Maxwell Charles Munakata

Max

Friday May 26, 2006

I go for my regular check-up w/my OB-GYN, Jeff Kerr-Layton. We really want him to be the one to deliver Max, rather than any of the other 12 docs who might be on call when I go into labor. Jeff jokes that this Sunday would be a good day for him.

I run into Yuhong and Doug, a couple from our birthing class, w/their 2-week old in the lobby. Yuhong explains that they first went to the hospital when she thought her water broke, but it turned out to just be her mucous plug coming out, and they sent her home. I wonder how any reasonable pregnant woman could mistake her water breaking (a watery event) w/losing her mucous plug (a mucous-y event).

Sat May 27, 2006

Randy and I walk out the door to see a 4:30 showing of the movie ``Water,'' after high-fiving each other in celebration of completing our post-semester, pre-Max work projects (3 articles, 2 chapters, and a grant for me, though there is some controversy over my article-counting methods...). We decide at the last second to wait for the evening movie, since we're running a little late, have some smaller work tasks to finish up, and want to enjoy a decaf ice cappuccino in the sweltering afternoon heat. Half an hour later, my water breaks.

I jump up from the couch. I never understood how any reasonable pregnant woman could mistake her water breaking (a probable event) w/peeing her pants (an improbable event) -- a common confusion according to the pregnancy books -- but I do actually think that I have peed my pants. I come to my senses seconds later, and start to panic as I clean myself up. Randy asks if he should be taking pictures. (No.)

I call Bonnie Slater, my doula, from the bathroom. I actually find myself wondering how to tell the difference between water breaking and losing the mucous plug. Bonnie explains that water is watery, mucous is mucous-y. I come to my senses, and confirm that my water has broken. Max is coming!!

Randy leaves for several hours of errands (shopping for last-minute baby items, doing laundry, paying rent and depositing checks, picking up stuff from the house, filling the car w/gas, etc.) -- a remarkable amount of stuff given all the prep we've been doing over the preceding weeks. I mainly hang out in the bathroom, constrained there by surprisingly steady water leaking. I call various folks to share the news. In response to incredulity that Randy is off doing errands, I explain that we're going w/the non-Hollywood style birth, and actually plan to stay at home until 5-1-1 (contractions every 5 minutes, lasting 1 minute, for 1 hour) or until 5 am (12 hours after water breaking), as recommended in our birthing class.

With all the errands, packing, conversations, small work tasks, and adrenaline, we end up staying up past midnight, instead of sneaking in as much sleep as possible before contractions, as recommended. Randy gets cranky, and reprimands me for working on my lab newsletter, of all things, as one of my final tasks. He does manage to humor me by shooting a video of us expressing our pre-Max thoughts just before bed.

Randy gets a whopping 4 hours of sleep, I'm up all night. My contractions start ~ 3 am.

Sunday May 28, 2006 (Max's Birthday!)

We drive to the hospital ~5 am, with a spectacular sunrise. My contractions are coming every 5-7 minutes, and feel remarkably manageable -- a 2.5 on the 1-10 pain scale that I'm constantly asked to assess. When we check into Labor & Delivery, the nurse asks if there's a full moon -- 5 other women have just checked in, the staff were amazed to see a line at the door, and they have several inductions and Cesareans scheduled on top of this. We hope there are enough nurses and doctors to go around! We don't know enough at this point to start counting anesthesiologists.

I'm examined ~7 am, and have dilated to 4 of the target 10 cm. We're amazed that I'm almost halfway there, and my pain levels are still minimal, ~ level 3 (aside from the stunning pain of the examination itself, which turns out to be unique to that one doctor, who thankfully rotates off so I never see him again). Randy and I speculate that I may be a freak of nature who will experience a painless childbirth -- how exciting! How wrong.

The next several hours are wonderfully easy, but unfortunately unproductive. When I'm examined ~10 am, I'm still at 4 cm. The doctors don't want too long of a delay between water breaking and delivery, so I'm given pitocin to induce labor. I've heard horrible things about the increased pain of induced labors. The doctor tries to reassure me by saying that is a misperception -- women think they were laboring fine and then pitocin drastically increases pain, but really they weren't laboring fine and pitocin just gets things going normally along with normal levels of pain. This makes some sense, but can't explain away friends who have served as their own controls (births with and without pitocin), who curse pitocin.

I can't really say what happened during the next several hours. You would have to ask the non-verbal, non-thinking, purely sensory being who inhabited my body during this period -- though I guess you wouldn't get much of a response. I'm vaguely aware that Randy keeps asking me what I'd like him to do, and doula Bonnie explains that I won't be able to answer him. I had heard this would happen (and that in fact, my feared scenario of yelling at Randy throughout the labor would be physically impossible), but I couldn't comprehend being in so much pain that I would be unable to talk for such a prolonged period. The pain is completely different from what I expected -- not at all high-pitched and focused around the baby, but instead very low-pitched, deep, and all-encompassing.

At some point, I'm told I've made it to 5 cm. When I'm examined many, many contractions later, the nurse kindly proclaims that I have made it to "more than 5 cm." She couldn't say 6, but she knew how demoralizing it would be to say 5 again. I decide that I've labored without pain medication long enough to know that I don't want to do it any more. I am also filled with awe for all of the women who have managed natural births since the beginning of time. And I feel just a little afraid of my friends who have accomplished this feat -- that kind of strength seems a bit terrifying.

The anesthesiologist is called, comes quickly (despite the crowds giving birth today, whew!), and sets me up with an epidural. If we hadn't been so set on the name Max, I would have been inclined to name him after the anesthesiologist. Wow. I open my eyes and emerge from a fog. I announce that I'm here, and start saying introductory hello's to everyone in the room. (I believe there was also some delirium about telling everyone how beautiful they looked.) I am so, so happy to feel like I can now be "present" for the birth. This was one of our goals on very basic birth plan list -- healthy baby, healthy mom, presence of mind to appreciate this miracle. After much rejoicing (which the anesthesiologist captures on our new hi-def videocamera -- quite a versatile guy! who is also into gadgets), Randy and I sleep off and on through the afternoon. Our friend Akira was later quite confused to hear this. He couldn't imagine how I could fall asleep while trying to push my baby out. But pushing is actually a very small part of labor -- again, contrary to Hollywood depictions! I learn later that Randy was quite baffled himself, watching the monitor graphing my ever stronger contractions and marveling at me sleeping through them.

As I get closer to 10 cm and pushing-time, Bonnie asks if I'm ready to no longer be pregnant. This seems like a bizarre question. But I have in fact loved being pregnant -- knowing Max's heart is beating inside me, feeling his kicks and squirms and hiccups, having him all to myself. So I can see how one might want to brace for missing all of this. But I am so ready to meet and to know and to love him.

We get the go signal at 8:15. Jeff Kerr-Layton (our desired OB) has arrived for the delivery! After some brief instructions (push like you're pooping), I start pushing 3-4 times with each set of contractions. Randy decides it would be helpful to shake my shoulders while I push. No one suggests this technique, and in fact several of us indicate that it may not be useful (and verges on annoying), but he can't help himself. We've been told throughout the labor that Max is positioned low, ready to emerge. Sure enough, we're soon able to see a spot of the fine black hair on the top of his head. I'm told this is often the most painful part of delivery. I can't feel a thing. Have I mentioned what a wonderful human being the anesthesiologist is?

A large mirror is set up so that I can see Max descend with each push, just the smallest perceptible amount. But then he retracts, what seems to be the same distance back. I find it too unsettling and distracting to watch, and close my eyes.

Bonnie needs to instruct me to look when Max's head pops out. Seconds later -- at 9:32 pm -- he emerges completely, to Jeff singing Happy Birthday and telling him he's zero! Max is placed on me, and Randy blinks away his tears to cut the umbilical cord. Jeff exclaims to Max, "You're free! You're free!" "Wait til you see the remodel!" (We're scheduled to move back into our house in a month, following 3 months of home renovations that began with just wanting a place to put Max's stroller...)

We've been warned that newborn babies can seem rather unattractive -- bloody, goopy, misshapen. Max couldn't be more beautiful. Randy and I can't take our eyes off of him. We cry tears of joy, amazement, relief, and love. We get to hold Max for an hour before he is taken briefly to a corner of the room for his measurements and tests. Everything looks perfect.

I can now comprehend not only how you could confuse water breaking for peeing your pants, and how you could endure hours of pain so great that you can no longer speak -- but also how you could confidently pinpoint the happiest moment of your life to your baby's entrance into the world.

Mon/Tue May 29-30, 2006

Blissful groggy days when we are never separated from one another. We learn that Max seems incredibly easy-going (not sure who he got that from...), loves to gaze intently at Daddy and hear songs about himself from Mommy to the tune of itsy-bitsy-spider, and is objectively the cutest baby in the whole world (as confirmed by every nurse we pose the question to directly ;-).

Weds May 31, 2006

We are supposed to go home from the hospital w/Max, but instead we get transfered to the neonatal ICU in Denver, because Max hasn't pooped yet. (Most babies have their first poop within the first 24 hrs, most of the rest within the first 48 hours. Max was 48 hours old Tue night -- we were all figuring/hoping he would just poop by Weds morning since all of his other health measures were totally normal, but he didn't.)

The doctors do various tests and determine that Max has some kind of complete blockage in his small intestine, which is preventing his food from passing through and needs to be treated quickly. So Max goes into surgery at 9:30pm, and comes out ~11:15pm. The surgery seems to be successful at removing the blockage, and Max's prognosis is excellent.

Thurs June 8, 2006

Started yesterday to eat Yuko's breast milk from bottle -- some going through the system, some coming back up. It is a slow process to dilate the intestine past where the block was (it shrunk from disuse). This could take a couple more weeks. He's happy and alert (when not sleeping) and not feeling any pain or discomfort. We've been bathing him and doing other basic parenting things (with some expert coaching from the nurses), which feels really good!

Sat June 10, 2006

In the end, Max ended up spitting up all the breast milk he was given, whether it came in periodic feeds (6 cc every 3 hrs) or in a continual feed (2 cc/hr). Because his food is not getting through, we are preparing for a second surgery sometime this week -- stressful for us, but at the same time, relieving. The surgery is straightforward and pretty much guaranteed to work, and it will ease the discomfort Max showed when attempting to eat. So, we'll be in the NICU a bit longer, but again, Max's prognosis is excellent.

Mon June 12, 2006

Max's second surgery went smoothly tonight -- we're very relieved, happy, and exhausted, and will post more soon.

Tues June 13, 2006

Today is a mellow day for Max, as he rests and recovers from surgery.

Weds June 14, 2006

Another mellow day for Max -- lots of well-deserved sleeping, which is good! His recovery is going well. He is already off of his ventilator (which is standard issue after surgery), in half the recovery time of his first surgery. He is comfortable, which is a big relief. We're looking forward to being able to interact more w/him again over the coming days!

Fri June 16, 2006

Max gets to meet his Uncle Dave! Dave is back in Colorado this week for a conference he is organizing, and then heads back to finish his summer in Stuttgart, Germany. Max stares intently at Dave, perhaps recognizing his voice after repeatedly hearing him from the womb?...

Sun June 18, 2006 (The Diagnosis)

This is a difficult update about Max's diagnosis. It turns out that he has the most serious and rare disease of all of the possible options given his symptoms: the long-segment aganglionosis version of Hirschsprung's disease. The doctors had indicated early on that this diagnosis was unlikely given Max's specific profile, and they thought they had ruled it out with a preliminary test during the surgery on Monday (which made us very relieved and more confident that he had immature ganglion cells that would mature in a month or so and he would be all better (More Details)). But, more substantial and systematic follow-up testing has revealed definitively that aganglionosis is the condition he has. It has essentially the same clinical symptoms as immature ganglion cells: in both cases, essentially no peristalsis occurs, and stuff doesn't move through the gut. The difference is that the immature case is transient, but aganglionosis is unfortunately a permanent condition. Although the condition is serious, it is treatable in various ways, and we're going to be learning a lot more about this in the coming days.

In Hirschsprung's disease, ganglion (nerve) cells fail to migrate to the intestinal system, so that it does not produce peristalsis, and does not move things through the system. The long-segment form has been traced to a random genetic mutation (in the RET gene) in most of the cases that have been analyzed -- none of the parents had the mutation, but the kids acquired it. This is presumably why it is so rare (one estimate is .1% of the Hirschsprung cases, which are 1/5,000, so this is 1 in 5 million). We'll get genetically tested to see if either of us has the mutation though -- the genetic story is complex and other forms of Hirshsprung's are heritable. We won't know with certainty how much of Max's system is affected until further tests this coming week, and this will determine how he is treated and what his prognosis is.

We met with Dr. Morrie Ziegler yesterday (who happens to be one of the world experts on this condition) and he stepped us through the situation (we have also been doing a lot of reading). He said that the minimum length of functional intestine needed for normal function is 40cm, and probably 20cm is the real lower limit. If Max has 40cm or more of ganglionic intestine, then his prognosis is good -- he will have a stoma and then later potentially a ``pull through'' that connects back to his colon so he'll be completely normal (with likely some more minor digestive & dietary issues). If he has less than 40cm, then things will be a bit more challenging, but not without hope. It turns out that Ziegler invented a procedure (in 1985, written up in a 1993 paper) that takes less than 40cm of ganglionic intestine and essentially turns it into the minimal 40cm worth of intestine needed, using the aganglionic section in a way that enables it to pass stuff through even without peristalsis (essentially, stuff gets pushed down from above). He said that two of the patients he has treated with this procedure and followed up with are now 23 and 15 or so, and doing really well -- getting most if not all of their nutrition orally. One of them lives in Boulder! We will likely meet them soon and that will be a great source of support and encouragement.

To the extent that Max cannot get all of his nutrition from the gut, then he must rely at least in part on IV nutrients (which is what he's been on so far). Although the IV can provide very good nutrition (called total parenteral nutrition or TPN), and can be supplied with portable fanny-pack unit that is minimally invasive, it taxes the liver and has risks of infection and other things. It seems that these liver problems are greatly reduced when at least some ``enteric'' (intestinal) nutrition is also coming through. So, the goal is to get as much enteric nutrition as possible.

The plan for the next few weeks is probably as follows. Max will have another operation this coming week (maybe Tues, but maybe a bit later) to find out how much of his intestine has functional ganglion cells. A stoma will be brought out at that point, or, if he has less than 40cm, at 40cm. He may also need a G-tube to drain stuff from his stomach and provide continuous feeds. This should make him a lot more comfortable -- he really doesn't like his current nose tube. Then, we wait to see if stuff starts coming out the stoma (as long as a couple of weeks). If that starts to happen, then feeding will start and will be incrementally increased as the system starts going. If he has < 40cm of ganglia, Ziegler said it is possible that the aganglionic part will just work anyway (we know for example that it was capable of moving the mecnonium all the way down to near the end of the small intestine), but if it does not, then the Ziegler procedure can be used to make it more likely to move stuff through.

Depending on how all these things go, Max may also be put on a donor list for transplantation -- this would not happen until he is older than a year. These transplants restore complete function and are a real cure to the disease. The risks come from immunological rejection of the tissue, and other complications of the major surgery involved, but recent studies showed as high as 86% success rates. The issues here are that often the people who get the transplants are in very bad shape by the time they get them, because of the way the transplant waiting list system works. Drugs to manage the immune rejection stuff are progressing very rapidly apparently. Again, we'll learn a lot more about this.

So, overall, there is still substantial basis for optimism and hope, and we are in excellent hands here. It is quite amazing that the world expert on this condition, Dr. Ziegler, is here, and will be one of Max's primary doctors. We'll be transferring to Children's Hospital (where Ziegler is based, right next door to St. Joes where we've been) for Max's next operation and subsequent care.

All of us (including the staff here), have been stunned by this diagnosis, because it is so rare, and because there seemed to be lots of reasons to hope for simpler outcomes. The two of us have had moments where we have been able to be strong for each other and for Max. Mostly, we have been alternating among feeling numb, devastated, accepting, and hopeful. When we are numb, it seems like this is all just a dream, and we'll soon wake to the idyllic life we had envisioned, w/frequent strolls along the Boulder Creek path w/Max. When we feel devastated, we are overwhelmed by the sadness of our precious baby having to struggle with this 1-in-5-million condition, and all of the uncertainty and difficulty in our futures. When we feel accepting, we recognize that Max has had this condition basically from the very beginning -- it is just gradually unfolding for us to understand, and we are so fortunate that things can be done for it. When we feel hopeful, we think about the many possible ways that Max can pull through this, and go on to enjoy a rich and fulfilling life. We love Max so much -- he has brought us incomparable joy. We envision him coming through all of this and becoming a very strong person, who will inspire us all to better appreciate the beauty of life.

Meanwhile, Max is continuing to recover well from his surgery and was alert, happy and curious a lot over the past two days! He is very comfortable and in great shape for the long road ahead.

Mon June 19, 2006

Today was a big adventure for Max -- we moved to Children's hospital. Even though it was just next door, and he is completely stable, an elaborate transport team with an amazing infant transport device was dispatched (see photos). The three team members all had matching action-hero jumpsuits and looked the part perfectly. They were all really nice and joked about their fancy outfits. We traveled in an ambulance. Randy felt sorry for the people who saw us -- it looked like some kind of major disaster had happened. A woman in the parking lot came up and caressed Yuko for comfort -- who fell apart a bit at the drama and kindness of the whole scene, but Max slept peacefully through it all! At Children's, Max is already winning the hearts of all the nurses, and trying to pick his new favorite! He is now comfortably settled in.

It is always hard to come to terms with new and scary-sounding information, and there will be lots of uncertainty about exactly what will happen at various steps along the way in coming months. But as we adjust from our initial expectations and learn more, we are feeling increasingly optimistic about Max's prognosis for a long healthy life. We've had a lot of good discussions with doctors, and have heard inspiring stories about other families who have faced similar challenges. We're in excellent hands, and Max is strong, healthy, loved-beyond-belief, and ready for the next steps.

Tues June 20, 2006

Max is becoming a real pro, and did another great job w/today's surgery. Good news -- the surgeon found preliminary evidence of ganglion cells, at ~20 cm down. (We had all been bracing for the possibility of none.) Max's stoma was brought out ~25 cm, so that he should have the minimum needed from Ziegler's perspective. Although this is not the magic 40cm number, Ziegler had said that more modern estimates for this number are around 20cm. The main motivation for bringing the stoma out at 25 instead of 40cm is that the (hopefully) fully functional 25cm should have a very good chance of moving things through and enabling Max to more quickly start eating. This is the best way to protect the liver from the negative effects of total parenteral nutrition.

If this 25cm segment proves to be functional, some additional length of aganglionic intestine may eventually be added on. (All of the intestine beyond the 25cm point remains inside, and also has a stoma for flushing things through). As mentioned earlier, as long as this aganglionic intestine is not too long, it can have stuff propelled through it by the upstream functional portion. This procedure worked for the two Ziegler patients we mentioned earlier, who actually had no ganglion cells -- so Max is in comparatively good shape.

In any case, the evidence of ganglion cells at 20cm is still preliminary because it was obtained by a quick but not as accurate "frozen section" method during the surgical procedure. This is the same method that gave us false-positive results last time. One reassuring piece of data is that there was clear anatomical evidence of a transition zone at this point, with the upstream intestine being dilated relative to the downstream one at this point. Anyway, we'll await results from the more definitive tests over the coming days -- still more uncertainty to live with at this point.

The reason this is being posted so late is that Max had some interesting adventures with his epidural, which he had implanted during surgery so that he wouldn't need so much systemic narcotic pain relief after the operation (during the operation, he is on strong gas anesthetics). Although it turned out that his epidural was placed correctly, it was not being run at a sufficiently high volume, and he was in some pain. The anesthesiologist who did the epidural during surgery left for home (surgery took a while, ending at around 7pm), and unfortunately the night shift guy was tied up in another emergency surgery case. Furthermore, many of the NICU staff were also tied up with another emergency. Therefore, it took a while to sort everything out, which was excruciating for us. But now the epidural is working great, and Max is very comfortable. In the end, this should be a great boon for a quick recovery for him -- he was already off the ventilator right out of surgery, and his bowel function should resume much more quickly without the depressive effects of systemic narcotics.

Go Max!

Weds June 21, 2006

After a long day of up and downs, trials and tribulations, Max is now doing very well. It was pure joy to just sit and watch him sleeping peacefully for several hours this evening, following a good hour or so of comfortable, alert time. Max listened with rapt, super-cute attention as we described our future lives back in Boulder. (Have we mentioned that this kid is cute?...) We spent the day focused on pain management (details below), and haven't heard any updates about the actual status of Max's ganglion cells.

We now have some valuable perspective on this whole pain-management process. A major contributor to the problem is that the hospital has a special "pain management team" that is separate from the NICU staff. Furthermore, this pain team dictates orders to the NICU folks in a unidirectional manner -- the NICU people cannot make their own decisions as situations evolve. Unfortunately, at night, this "team" is just a single on-call doc who is often in emergency surgeries. Even during the day, the team is spread pretty thin, and coordinating between the local NICU staff and the pain team is suboptimal. This seems like a recipe for exactly the problems we experienced: delays, miscommunication, lack of coordination, etc. The nurse from last night (on again tonight) said she was going to write a complaint about this situation (she was at least as traumatized by the whole process as we were!). We are contemplating doing the same.

The final resolution of the situation, at 6pm today, was to change the mix of goodies in Max's epidural bag, and give him occasional tylenol and fentanyl to cover the stuff that the epidural doesn't. This shows that pain management is a very tricky business. It constantly treads a fine line between too much (risks stopping breathing and other important functions) and too little. There are lots of different drugs with different interactions (some beneficial: tylenol apparently potentiates fentanyl) and some not. Anyway, this is more than you wanted to know, but it leaves us with a great appreciation for the complexity of medicine, and the need for appropriate organizational structures to allow this complex dynamic process to be managed more effectively. One final thing: the difference between Children's and St. Joes is that St. Joes just used the safe but blunt instrument of fentanyl (and also ended up under-treating Max's pain several times), whereas Children's is developing these more advanced but trickier epidural techniques.

Thu June 22, 2006

We find we are growing increasingly nervous about when we'll hear back on the biopsies. Our sense is that the longer this process takes, the worse the news. (The original Hirschsprung's results took almost 3 full days.) We paged the surgeon and the pathologist yesterday, but neither got back to us. We page them first thing this morning. The pathologist says she'll try to come see us as soon as possible. The surgeon says he'll be in this afternoon, but the pathologist should be able to give us "the full report" before then. No contentful information is communicated to the nurse who paged them. This only adds to our anxiety -- if the surgeon could have just said that things were fine, wouldn't he have? So we enter the all-too-familiar process of trying to kind of brace for the worst, while not allowing ourselves to ruminate too extensively about all of the possible scenarios and their implications. (But we do find ourselves second-guessing the decision to place the stoma at 25 cm, if the original pathology was wrong.)

The pathologist, Sarah Mengshol, shows up a little before noon. She asks how Max is doing -- small talk that seems a bit unlike her and a bit like procrastination. She then starts her description of the pathology results by stepping through some general information about intestinal anatomy, and where Max's samples were taken from. Randy and I are ready to leap from our seats to shake the information out of her. After what seems like eons (but is probably a matter of seconds), she brings the good news: She and the pathology team are very confident in the conclusion from the preliminary results -- that Max has ganglion cells at 20 cm!!!! The permanent stains were readable at 5 cm, 25 cm (the stoma site), and 30 cm -- the 5 cm stain showed normal ganglion cells, the 25 cm stain showed some ganglion cells but not full innervation (consistent w/the idea that this is a transition zone between innervated and non-innervated intestine), and the 30 cm stain showed no ganglion cells. There was not enough tissue left from the 20 cm biopsy after the frozen sections for a permanent stain to be readable. But they did extensive tests on the frozen sections and determined that there are ganglion cells, in the right location.

Now we wait -- as long as a couple weeks -- to see whether stuff starts coming out the stoma. The hope is that by bringing the stoma out at 25 instead of 40cm, this length of intestine should have a good chance of moving things through and enabling Max to gradually start eating. So, please add happy stoma-output thoughts (yes, happy stoma-output thoughts) to your healthy ganglion thoughts!! ;-)

In the meantime, Max's pain management has continued to go well. He slept quite contentedly on Randy for several hours this afternoon, waking for only one brief fuss, during which Nurse Kathy expertly coached Dad on how to soothe rather than overstimulate Max.

Also, we had a few nice moments today that made us feel like we could actually start envisioning reconnecting with the real world. I ran into Rich Boada, a former DU grad student, in the hospital cafeteria -- it was so wonderful to see a familiar face! He's now a clinical neuropsychologist here. And we chatted with the surgeons about matters other than Max, which brought a welcomed sense of reduced urgency. We confirmed with surgeon Dave Partrick that he is in fact a foodie -- as suspected when we learned that his 10th wedding anniversary trip to Aspen last weekend was timed with the food and wine festival there. And we talked with surgeon-in-chief Morrie Ziegler about the smallness of the world -- he had a phone meeting today with another pediatric surgeon, Bob Telander (who also happens to be the father of one of my college housemates), who asked after Max. He also told us about his older brother Max and how this gave rise to his name, Moritz, from the German story Max und Moritz.

We obviously still have a long road ahead, but it's incredibly exciting for us to start thinking more about Max getting to meet all of you!

Fri June 23, 2006

We go by St. Joe's and talk with two of Max's favorite nurses, Diane and Barb -- it is great to see them and we already feel very nostalgic for our times there. We find it amazing how much the staff really cares for Max -- we would have thought that seeing so many patients with so many difficult health conditions would make the NICU people more desensitized and uninvolved, but this certainly does not seem to be the case here!

By the end of the day, Max's stoma starts producing some stuff, and we get a lesson on changing the stoma dressings. This makes the otherwise fairly intimidating process seem more manageable...

Sat June 24, 2006

Big events for Max today:

Max loves to be held by all of us, and is very happy and curious!

Sun June 25, 2006

The big picture still looks the same for Max, but today is kind of a bump in the road. His epidural is turned off in the morning and removed around noon. He is very unhappy about this, fusses through much of the day and night, and requires more pain medication. His broviac (heavy-duty IV) becomes dislodged at some point; the nurse does a temporary fix, but the longer term fix will require an additional surgery. It will be minor and straightforward, but is quite stressful to us in the context of Max being so unhappy today. The most painful part for me is that Max is also now clearly hungry. His gradual feeding through his G-tube starts in the afternoon, but probably isn't enough to satisfy his stomach and does nothing for his mouth. He waves his hands frantically around his face, tries to put his fists into his mouth, and cries and cries. I'm desperate to nurse him, but can do nothing. I promise him repeatedly that as soon as he's ready, I'll be there.

Mon June 26, 2006

Today is a wonderfully restful day for Max. He sleeps pretty much all morning (before we arrive), and then in our arms during the afternoon. He needs only a dose or two of pain medication all day, so he seems to really be on the mend (and/or worn out from all his fussing yesterday!). He has only one seemingly-inconsolable crying fit in the evening. Randy employs his usual strategy of trying to reason with him: "Daddy's right here, Max. Max, look at me. Look at me, Max." This time it actually works! Max has a strikingly cognitive moment where he stops wailing, locks eyes with Randy, and is instantaneously soothed. Beautiful.

Max seems to be tolerating his initial gradual feeds (at 1 cc/hr) -- he's keeping everything down, and it appears to be coming out his stoma at a good rate. (You want stuff to come out the stoma, but not too quickly or it can be dehydrating.) The docs are considering upping his feeding rate (to 2 cc/hr). They are also trying a couple different "recipes," which contain different proportions of medium chain fatty acids (which are relatively easy to digest and good for nutrition) and long chain fatty acids (which are harder to digest, but good for stimulating growth of the intestine). One of the fellows gives Randy two thumbs up for asking informed questions about these mixes.

We feel like we're starting to adjust a bit to the local ups and downs of this whole process -- though it's probably not coincidental that we're feeling this following a really good day! Still, with time we're feeling less numbness and devastation and more acceptance and hopefulness.

Wed June 28, 2006

Today is Max's 1-month birthday! He celebrates it by:

Thu June 29, 2006

Max had a small surgery (his 4th) to replace his broviac (heavy-duty IV) line. He had kicked it out earlier in the week. The surgery was much less disruptive than his earlier ones -- he recovered very quickly, and is just on Tylenol for pain for a short period. He is doing great, resuming his continuous feeds and his special 5cc's of mama's milk every 6 hrs! Also had another special visit from Granna on her birthday.

Fri June 30, 2006 (The Plan)

We have become increasingly optimistic about Max's prognosis, and would like to share the basis for this optimism, so that it can hopefully spread! First, here is the short-term (next several months) scenario:

Based on many many articles on long segment Hirschsprung's and short bowel syndrome, the number one priority for maintaining overall health is avoiding bacterial infection of the intestine, which is achieved by having good flow through the system. The vast majority of cases that don't go well can be attributed to things not flowing well. Max has already demonstrated good flow quite robustly, so this is a major advantage for him. We are very happy that the doctors brought out his stoma at 25cm, which allows his 20cm of ganglionated intestine to move things through very well without being blocked by a longer aganglionated segment afterward. This was "conservative" relative to having a longer segment (e.g., 40cm), but this clearly reflects the importance of flow.

The countervailing number two priority is to absorb as much nutrition as possible from the intestine, because of the longer-term risks associated with the effects of TPN (IV) nutrition on the liver. These risks are much more gradual and can be managed in many ways by controlling the TPN brew, and they also appear to diminish after the first year or so of life. Furthermore, getting at least 20-30% of nutrition from the intestine provides a significant protective effect on the liver. Max should be in very good shape given his existing good health and the robustness of his functioning intestine.

So, the near-term prognosis looks quite good at this point. Furthermore, as you can see from the pictures, Max himself continues to look and feel great. Indeed, it is often very difficult to actually convince ourselves that he has any kind of medical problem at all!

In terms of the more specific treatment plan, for the next 4-6 months (minimum), Max's functioning intestine will be slowly and incrementally challenged with increasing amounts of food, and in response should adapt in amazing ways, getting larger in all dimensions (length, diameter, and thickness), and becoming increasingly able to absorb different nutrients that other parts of the intestine normally process. The new mantra is now "happy intestine adaptation thoughts!" -- catchy.

Max will remain in the hospital for this time period, so that this process can be carefully monitored and his diet adapted, etc. As soon as a space opens up, we will move from the NICU to a longer-term care area down the hall. We plan to set up his new home like our home would be -- lots of toys and fun things for Max, laptops for us to allow more of a return to the (virtual) real world when we're not holding and playing with Max (this is how we get most of our work done anyway). We recently transitioned into driving from Boulder rather than staying in a hotel by the hospital -- this is a tolerable ~35min drive, and the comforts of home far outweigh this drive.

Once Max's system has stabilized, we will be able to take him home! We will almost certainly need to give him his IV-based nutrition (TPN) and other specialized dietary stuff, with the TPN likely being periodic (maybe every night, maybe only a few nights a week, maybe more than that). His system will continue to adapt and hopefully improve the amount of nutrition that he gets from eating compared to the TPN. Thus, we will have to monitor him closely and have regular checkups with the folks at Children's.

Depending on how much TPN dependence he still has after around 9mos to a year, we may consider various surgical procedures to increase the length of intestine available. This may be the Ziegler procedure (attaching roughly 15-20cm of his aganglionated intestine to his current 25cm (which will be longer by then)) or various other more recent intestinal lengthening procedures.

After 1-2 years, and depending on how everything goes, we may look into transplantation procedures, which have really been advancing dramatically in the last 5 years. We will probably not want to rush into this, to allow things to develop even further, but all depends on how Max is doing.

There are reasonable chances that he will be able to go off of TPN entirely, and get rid of his stoma. But we are also becoming more and more comfortable with the idea that he may need to be dependent on some level of TPN and/or have a stoma for the rest of his life. He is such a happy, beautiful, and bright baby boy who we can easily see making the most of life. We will provide all of the love and support possible for this, and appreciate every minute of it all the more. We know there will be many ups and downs in this whole process -- right now things are definitely looking up so we are savoring that!

Tue July 4, 2006

Recent exciting events in Max's life: Somewhat more disappointingly, Max's g-tube feeds were upped to 4 cc/hr yesterday, but had to be dropped back down to 3 cc today because they were taxing his system too much. We know this will be a very gradual and nonlinear process. But everything is getting through, which should continue to promote adaptation of his intestine. Go Mr. Max!

Wed July 5, 2006

Today is a good day for Max -- lots of happy alert time with us in the late morning and early afternoon (during which he is ruthlessly hogged by Randy!), followed by sleepy swing-time.

We've gotten the impression that some folks may be wondering whether we are delusionally upbeat about Max's situation. We don't think so. We definitely recognize that there are tough and uncertain times ahead, and we grapple with all the emotions you might expect -- despair, anger, helplessness, longing, fear, etc. This doesn't come across much in Max's page, in part because we tend not to write during those times. But we also have the benefit of one of the best antidotes for those feelings -- Max himself! We get so much pleasure from holding him, kissing him, gazing at him, smelling him, soaking him in, savoring him. He has opened up whole new reservoirs of love in us, for him and for each other. And we have so many additional sources of comfort that we are deeply grateful for:

Huge thanks from us for now, and we'll look forward to when Max can thank you himself down the road!

Fri-Sun July 7-9, 2006

Max is the cover baby for the US News & World report website! The photo is fairly medically-oriented, but it does capture how very happy Max has made us. Max also is the lead 2 paragraphs of their cover story on the web, on America's best hospitals. The actual magazine (out next week) should include a couple of photos. We hope those photos will better showcase what led the photographer to ask, "How did you two end up with a baby this cute?"

Two other exciting developments: We get a couple of remarkably effective tips on how to calm Max when he gets upset, which is usually when things need to be done around his abdomen. It turns out that just supporting his head in one hand, an inch or two above his crib, is often all it takes to make everything ok. We also start to think about longer term plans for providing the kind of environment we want for Max to the extent possible while he's in the hospital -- our contact person on this issue is Ayelet Talmi, another DU PhD now working at the hospital, who will be a great advocate for Max!

Mon July 10, 2006

The highlight of Max's day is meeting Corrie, his first cousin once removed! (to the extent that Max experiences highlights while sleeping...) The highlight of our entire hospital dining experience to-date is enjoying a picked-fresh-from-the-garden salad and raspberry pie from Corrie!

Otherwise the day is filled with ups and downs -- probably just the usual bumps in our very long road. The day starts with a care conference of Max's entire team: surgeons, nurses, neonatologist, GI specialist, and developmental specialist. The down side is that they naturally focus on areas of concern for Max, which can feel overwhelming for us. The up side is that these concerns are being directly addressed by this expert team:

Tue July 11, 2006

Max's fever is back. A number of tests are run to try to determine the site of infection. His central blood test (easily obtained via his broviac) is still negative. Another easy sample is the output from the top of his distal intestine. While we're waiting for those results, Max undergoes a couple more difficult tests -- a peripheral blood test (requiring needle pricks) and a urine test (requiring catheterization). I hold Max's head and free hand while he is poked for the blood test. His soulful eyes plead with me to do something, and he screams as the nurses struggle to get a sufficient sample. The needle pops out, so they must try again. They give him a tight swaddle, I lock eyes with Max and talk with him about what a very brave boy he is, and the nurses get a good sample from the other hand without much further difficulty. Max is soon resting peacefully in my arms. I am bracing for the urine test, but it turns out that Max practically sleeps through it -- even as cold water and blown air are applied to encourage more production! Good boy!

The infection appears to be in Max's distal (unused) intestine. We need to wait for results to determine what kind of infection it is, but in the meantime, he is receiving a broad spectrum of antibiotics to treat it.

Wed July 12, 2006

Max is still fighting something, as indicated by his continuing fever (which is being controlled with Tylenol) and rising white blood cell count. It's just not clear exactly what. A CT scan reveals diffuse swelling in his distal small intestine, indicative of bacterial growth. This is scary at many levels -- it is taxing on his liver, it is difficult to access because there is so much nonfunctional intestine that nothing can be flushed through the system to try to treat it directly, and it may spread to other parts of his system. I break down, and the thoughts that I have not been allowing myself to think come flooding through.

Reason eventually sets in. This infection may be treatable with the systemic antibiotics that Max has been receiving. The output from the top of his distal intestine has not shown bacterial growth yet, which may indicate that his system is successfully killing the bacteria by the time they reach that point. His proximal (functional) intestine continues to flow well, which is important for avoiding bacterial infection and supporting adaptation for nutrient absorption. All tests to-date indicate that the infection has not spread elsewhere. Our docs are coordinating with Children's Hospital Boston (where Ziegler used to be) about their omega-3 IV nutrition that may be better for the liver. And, even in the worst case scenarios, there are further treatment options. Meanwhile, Max continues to seem very strong and healthy, and able to fight off this infection!

I know you are all eager to meet Max, but we'll need to hold off on visitors until he's through this, and as Randy and I continue to work through how to share this sweet little man! After just a day away, Randy can't believe how much older Max seems. And how strongly bonded to mama. Max stares and stares at me, unphased by Randy's attempts to distract him with funny faces and noises. Randy speculates that it is only the dark contrast of my glasses that holds Max's attention. So we put my glasses on Randy. Randy later speculates that I must have just been better positioned for Max to stare at -- we'll test this theory tomorrow...

Thu July 13, 2006

Max is the man! All of his numbers are looking better this morning -- white blood cell count, C-reactive protein, etc. Very gradual improvements, but all good signs that he may be on the road to recovery from his infection. The antibiotics are slowing Max's digestive system (an anticipated side effect), so his feeding is reduced to 1 cc/hr for now. His temperature is fine all day, without any Tylenol. And he is happy. The nurses encourage us to try to move him toward more of a sleep-at-night schedule, so after rousing him, we spend much of the morning talking, playing, and dancing with him. He shows small hints of smiles (or gas?), but nothing to demonstrate a full appreciation of the spectacle of his parents dancing. In the afternoon, Max delights in a vigorous shampoo. His hair has seemed to be quite the blend -- black (from me) and greasy (not from me) -- but it has been getting lighter and now shows distinctive brown highlights. It is a luxury for us to take in mundane details like this.

Today is a good day for replenishing our strength, in terms of both Max's progress and our time with him, and our own nourishment. We take comfort in chicken soup from friends here, and feast on a gourmet spread sent by friends in Madison!

Fri July 14, 2006

Max's numbers continue to improve and his temperature continues to be fine! His digestive system is still very slugglish from the antibiotics though, so his feeds are stopped -- to be resumed once he's done with the antibiotics. He is still getting nutrition from his IV and oral stimulation from his pacifier. And we should be able to start putting dabs of breast milk on the pacifier for him soon, which may help to soothe him and to sustain us. (I have gallons of frozen supply, and have slowed my pumping frenzy but haven't yet finalized any decisions about stopping.) Max is quite happy sleeping in our arms for much of the day. We figure we can work on the sleep-at-night routine more diligently when he has fully recovered from this bug.

I get a voice mail from my OB's office in the afternoon, reminding me about my regular postpartum checkup on Monday and encouraging me to feel free to bring my baby boy. This hits hard. Erica, a nearby mom in our longer-term care unit (and former next-door neighbor in the NICU), warns from experience that the checkup itself will be hard too, with everyone asking where my baby is.

As always, Max is the best cure for any associated worries. And for this situation, he goes all out. As I'm holding him at the end of the day, he looks up at me and gives a couple of quick smiles that seem quite genuine -- his very first!! Turns out he's only warming up. He moves on to a big broad beaming grin, holding my gaze all the while. I melt. Randy is so enamored with the first quick smiles and his photo attempts of them that he misses Max's broad grin. We receive reassurances that Max will smile again.

Speaking of how cute Max is, he showed up as a centerfold in this week's hard copy of US News & World Report, in a foldout page as part of their opening story. It includes the same photo that was on their web site, and another photo of the surgeon checking Max out. Neither photo shows how cute he is though -- we agree with our friend Jan that this would have been just too distracting from their story line!

Sat/Sun July 15-16, 2006

Max starts to realize that he can completely control everyone around him with just a simple twitch of his zygomaticus. He doles out smiles for Randy and me, for the nurses, and for our friend Michael visiting from Tucson. I'm relieved that Max seems to have worked through any confusion associated with me crying in response to his first smile -- to which he had responded by frowning, hiccupping, and going to sleep!

Mon July 17, 2006

Today is an incredibly dull day with Max. All of his numbers look great, no unexpected medical issues come up for discussion (unlike every other day, where we've been constantly kept guessing by even minor developments that are quickly resolved), and after a few smiles for everyone, Max spends most of the day sleeping in our arms. Boring, boring, wonderfully deliriously boring!

My postpartum checkup goes much more smoothly than expected -- it turns out that everyone we talk with at the doctor's office is reading Max's page and rooting for him! So we get lots of support instead of the painful questions we feared.

Tue July 18, 2006

Max is 7 weeks, 2 days old. For the first time in his life, he can be held in my arms to go for an untethered stroll. (We strolled at Good Samaritan, where Max was born, but they required all newborns to be placed in rolling carts for that.) Now Max is stable enough to take a half hour break from his IV nutrition. For the moment, he's free! He cries briefly as we leave the familiar confines of the longer-term care unit, then settles into an apparent state of wonder as he takes in the new sensations up and down the corridors. (We postpone going outside until at least tomorrow, so that Randy can be part of this celebration -- Tuesdays have become his work-at-school day.) As we stroll, I try to encourage Max to look not just at me, but it's a halfhearted attempt -- his quizzical "Mom, what's happening?" look is too endearing. He finishes his contemplations after about 10 minutes, then dozes off for the remainder of the field trip. A simple stroll, a joyous event.

Thu July 20, 2006

Today is Daddy's special day alone with Max, while Yuko goes to work at school (and has a good day with her lab). This was a perfect day, after a particularly cranky and sleepless night (for Max), which caused me considerable trepidation on the drive in. When I got there, Max was just stirring -- I picked him up and he relaxed in my arms, and we had a great, long nap. I put him in his bed for more rest (and got a little bit of programming done on the laptop), and then he woke up and we had a really nice conversation about all kinds of things, for about 20 minutes. Max expressed two heartfelt grunt/squeaks, and lots of very expressive smiles and other interesting mouth shapes. Then, we went for our 30min walk through the hospital! I couldn't wait to take him down to this big Rube Goldberg contraption on the first floor, with balls going through all kinds of hoops and levers and jumps. He was unfortunately a bit groggy and only expressed the faintest of interest in this. Maybe later. Then, we went up to the 5th and 6th floors, to look for purported mountain views. We didn't find them, but Max woke up a bit, and really enjoyed sitting on a window sill in the sun, staring at the traffic and people below, and gazing off at St. Joe's in the distance (he didn't seem to remember being there, or at least didn't let on to it..). On the way back, Max stared with great interest and intensity at a series of paintings -- each time we went to the next one he seemed somewhat startled, but then became equally absorbed again. He was pretty wiped out for the rest of the day, and slept soundly!

Fri July 21, 2006

Max goes outside today! For us, this event is much more relaxing than our previous adventures with Max in the outside world (traveling from Good Sam to St. Joe's, and from St. Joe's to Children's). For Max, it's all equally relaxing, so he takes his usual nap. We do catch him sneaking a few peeks at the sky, trees, and flowers.

For some reason, Randy and I are both feeling impatient today. (Usually we are out of sync, so one of us can reassure the other.) Although we understand in the abstract that this process will be very slow, we find ourselves wondering why it's taking so long! My former student, Meg Ryan (yep, Meg Ryan), suggested that Max is just waiting until we can move back into our house after our remodel is done -- originally scheduled for July 1, then Aug 1, then ?? A lot of waiting on all fronts, but what an amazing homecoming it will be.

Sat/Sun July 22-23, 2006

Randy and I have been inexplicably terrified of one aspect of Max's care -- cleaning around his g-tube, where he has been extremely sensitive. While we've become pretty comfortable with treating Max's stoma (even discussing details of its output over breakfast!), we've left the g-tube to the nurses. Finally, over a month after it was inserted, I declare that I'll give it a try. Randy's jaw hangs open in disbelief. I get started, but after a few seconds, Randy is saying, "No, no -- not like that, like this!" and jumping in to do it better. This reminds me that soon after Max's diagnosis back at St. Joe's, Nurse Barb reassured us that we would become experts at these foreign medical procedures. This seemed inconceivable then, but after just starting to tackle the g-tube, we come away feeling like we can learn whatever it takes to become masters of Max's care.

Max gets a very special visit from Boulder great aunts Carse and Paula, and first cousin once removed Morgan. He emerges from hibernation for the event, spending most of Sunday in a content, alert state! Paula is the first to declare Max the cutest baby she's ever seen. He rewards her with his focused attention. Carse asks him what he's storing in his cheeks, and Morgan credits Randy for Max's protruding forehead. Max is unphased, and happily gets passed around for everyone to love.

In small world news: The neonatologist, Patti Thureen, comes in for Max's regular checkup (all looks good), and we discover that we are related! Academically, that is. We collaborated on a grant proposal submitted last month, on perinatal dietary supplementation as a prevention strategy for schizophrenia. I would test infant cognitive outcomes, and she would supervise any dietary safety issues. We had never met because the grant team is so large, and it is coordinated primarily through the Principal Investigator, Randy Ross. Now we're meeting thanks to Max. Go figure.

Tue July 25, 2006

One of the twins in the unit next to Max goes home today. I jealously ponder how easy their lives seem in comparison. Then I hear that they used to be triplets. It seems there's always more to the story than one might think. That's certainly the case with Max. He looks so healthy and strong, strangers always ooh and ahh over him on our walks -- having no idea how fleeting these moments of normalcy are for us.

Lizz, the nurse practioner, is calling a care conference of Max's team for next week, to discuss ways of treating his distal intestine directly with antibiotics, to prevent future infections. She also wants to discuss transplant and further surgery options. I'm thrown by this, because we had thought these options would not be relevant for some time -- and as far as we understand, this is still the case. We're trying to expect the unexpected, but I'm starting to wonder whether this is really possible.

We continue to take great comfort in food, including delicious quiche and banana bread from our Sunday visitors!

Wed July 26, 2006

Today is a beautiful day for Max. He is alert and happy for most of 2 am -- 3 pm! This gives him wonderful opportunities to stare at his mesmerizing new Symphony-in-Motion mobile, to meet our colleague Eliana Colunga and her husband Gustavo, to wave his arms and kick his legs at his mobile, to welcome Grandma Anna (Nana) for her second visit to town, and to coo at his mobile. Max has been gradually transitioning from his backward day-night schedule, and at the same time seeming to get much happier. The nurses used to describe bouts of extreme fussiness in their informal reports to us (particularly about Max's nights). Now they more frequently mention how smiley (and flirty!) he's become.

Fri July 28, 2006

We learn more about the transplant issue from Max's GI team today. There are some indications (e.g., bilirubin and enzyme levels) that Max's liver is being taxed -- a risk associated with IV nutrition and lack of nutrition from the gut. This may have been exacerbated by his infection and may resolve as he continues to recover from it -- we'll get a better sense of this next week. Regardless, Max's team is aggressively pursuing different options for him. One is to coordinate with transplant experts, likely the ones based in Pittsburgh. We may take a trip out there in a few weeks for Max to be evaluated, both to get the experts' input and to get Max into the transplant system just in case. This is much earlier than we had expected to be thinking about transplants, but this is just one of many possible scenarios that Max's team is considering. As usual, we will gradually learn more, and very much appreciate being in such good hands -- with Max's team actively coordinating and working through options, and with transplant experts in Pittsburgh, a place we love to visit from our grad school days!

Meanwhile, today is Max's 2-month birthday! He doesn't pose for a national publication this time around, but Nurse Maryanne repeatedly calls him an Anne Geddes baby. He celebrates today by:

Sat/Sun July 29-30, 2006

Max continues his ``empty nursing'' over the weekend. He gets completely blissed out during these sessions, as do I. This takes us all back to our halcyon days at Good Sam, where Max was born and nursed for 2.5 days. In honor of this, I finally update Max's page with details of what transpired on his birthday!

Tue Aug 1, 2006

Max's bilirubin levels (drawn once per week) were slightly worse yesterday -- the neonatologist characterizes them as about the same. Max's care conference is scheduled for tomorrow afternoon. Topics for discussion include: So, lots of uncertainties to be resolved, probably very gradually.

In the meantime, Max is a little tired/cranky today, but gets cheered by a visit from his Evergreen great aunt Jeanie -- who even manages to soothe Max to sleep in the middle of a bag change procedure! I'm a little tired/hungry today, but am nourished by Jeanie's company -- not to mention the homemade feast she brings for today and beyond!

We may not post updates as reliably this week, while we're moving back to our "done-enough" house. And we will eventually send thanks for all the wonderful gifts we've received -- from the morbidly entertaining primer for parents ("the notorious early Shel Silverstein classic you won't want your children to read"), from a CU colleague, to the sweet multicolored hand-knit hat from a woman in Philadelphia who we've never met.

Wed Aug 2, 2006

It looks like we'll go for the 5-day evaluation in Pittsburgh next week. In a Learjet! This boy does things in style. Max's docs clearly state in the care conference that they are just being very proactive in exploring multiple options, which we really appreciate. When we return to Denver, they will continue to pursue non-transplant options.

Why do we need to go to Pittsburgh? They are transplant experts, handling ~50% of the country's transplants and training many of the staff now at other top transplant hospitals. Being on-site will allow Max's transplant team to closely monitor his status and confer about it. They will test Max's eligibility for a transplant (e.g., recipients must be cancer-free to take the immunosuppressants required with transplants), and assess other strategies. (We learn in the care conference that removal of the distal bowel is just one of many possibilities the Pittsburgh team wants to consider, not the definite request we had understood it to be initially.) Another explicit purpose of the trip is for us to get educated on the whole transplant process.

We're preparing Max for Pittsburgh with stories of how mama and dada met and spent many wonderful years there -- often referred to as the Camelot years, by our roller-hockey, rock-climbing, hackey-sacking, sailing buddies from that era. Max gives the hugest, longest smile yet in response to my story about how dada (as a first year graduate student) took mama (as a prospective student) out for a "recruitment" lunch -- to a lovely establishment near CMU known for serving buckets of fries! And then made her pay for it. Randy tries to tell similarly incriminating stories about mama. Max listens politely, but doesn't find them nearly as compelling.

Thu Aug 3, 2006

Turns out "next Monday" means Aug 7 to the Denver team (and to us!), but Aug 14 to the Pittsburgh team. We'll go to Pittsburgh Aug 14. This will give Max lots of time "this" week with baba (Grandma Munakata) and jiji (Grandpa Munakata)!

Fri Aug 4, 2006

Max gets to meet for the first time Maya (his second cousin) and Yves (his first cousin-in-law once removed), and to see for the second time Corrie (his first cousin once removed) and Jeanie (his great aunt). (We'll put up a family tree one of these days!) Max has been growing ever more curious about people around him -- making him ever more popular with the nurses -- and he gazes intently taking everyone in.

Randy and I are back in our house. It feels great, even amid the din and the dust and the steady stream of contractors. We tell Max all about the home that awaits him.

Sat/Sun Aug 5-6, 2006

Max's stoma output has been on the high side for a couple days -- he and I take a break from empty nursing so the situation can be assessed. Max takes it in stride, turning his attention to the important matter of meeting jiji and baba. He demonstrates for baba how he steals hearts with a simple smile. And he upholds jiji's reputation as a guy babies like to stare at.

Max gets his third full-dunk bath of the week. Randy and I were initially quite nervous about giving these, because of all the wires and tubes to coordinate. But it turns out to be easy enough to plop Max into the tub and watch him luxuriate in it! Hopefully a good life lesson in there somewhere...

Tue Aug 8, 2006

Max's bilirubin levels were slightly better yesterday! They would probably be characterized as "about the same" again, but everyone is excited to see his liver numbers going in the right direction.

His stoma output continues to be mysteriously high though -- he is outputing much more than he is taking in, indicating that he is probably not absorbing anything from his feedings. One theory was that his increased output was tied to a change in his stomach acid medications, but these have since been changed back with no effect. Another possibility is an infection, but Max has no fever. He does have an elevated white blood cell count, which could suggest that he is fighting something, but this is also a known side effect of one of his medications.

His feeds have been gradually reduced, from 2.5 to 1cc/hr, while his output levels are monitored. We're warned that he may ultimately need to go "NPO" -- or non per oral (no intake by mouth) -- as part of this process. We really don't want this to happen, since this has made Max miserable in the past. He clearly gets so much comfort from anything in the mouth -- whether tastes of breast milk, his tiny rations of formula, or any of his (sweetened) medicines. I try to savor what may be one of our last empty nursings for a while. Unfortunately, the GI team comes in to assess Max right in the middle of it. I'm thrown, but Max continues to bliss out as usual, despite the interruption. He's my role model.

In addition to further spoiling from baba and jiji, Max gets a visit from one of his oldest friends, Nurse Practitioner Kristin Neumann from St. Joe's. (She knew him even before he was a cover boy/centerfold...) She can't get over how he -- and his cheeks! -- have grown. And we can't believe how many lifetimes ago our 3 weeks at St. Joe's seem.

Wed Aug 9, 2006

The bad news is that Max seems to have an infection, his second. The good news is that he seems to be doing a great job fighting it himself, he starts an antibiotics dose tonight to help him out just in case, and we now have a pretty good sense of the signs Max shows early in infection, which should help for quickly detecting and treating any future ones. The main sign is unusually high stoma output (which began last Friday, but was initially misattributed to changes in his medication). If this should happen again, we'll likely try to go straight for the CRP (C-reactive protein) test, which measures inflammation as an indicator of infection. Even before the antibiotics, Max's output and white blood cell count were on the decline, which may suggest that he was successfully fighting the infection. He also managed this without developing a fever. The antibiotics will just make sure to finish the job, and help protect Max's liver.

If any of this is making Max feel unwell, he sure doesn't show it. He seems to be getting not only cuter by the day, but also more clever! And learning to combine the two. Randy and I each could swear that Max is doling out his primo cuteness strategically today, to get the attention, treat tastes, and cuddling he desires. We reward his efforts handsomely.

Thu Aug 10, 2006

You never know what little thing might set you off. On my way to school, I stop at our old apartment for a final check for any forgotten items (only a shower caddy). I'm totally unprepared for the sorrow that washes over me as I walk through the empty space. This is where my water broke, where Randy and I began fully anticipating Max's arrival, where we planned to start our lives with him. This place provided an important buffer between the lives we envisioned and our reality. I'd like to think I could just deposit my pain here, in the same way we often want to bottle our mental states when we feel super strong, accepting, and ready for anything -- saving them for when we need them later.

Sat Aug 12, 2006

Max's infection seems to be under control -- he never developed a fever, his stoma output is reasonable, and he is clearing stuff out the top of his distal intestine like he did last time. So, we're headed to the 'burgh in the wee hours Monday morning! We'll stay at a hotel near the hospital for this trip, but so appreciate the many generous offers of housing and other support from friends there -- a couple of whom were even willing to make their offers non-contingent on getting to meet Max! Crazy.

Today, we meet the 17-year-old girl with Hirschsprung's who lives just 15 mins from us. She is slender, but you would never guess her condition, just as Dr. Ziegler had said. She rides horses and wants to be a screenwriter. She has friends. She seems strikingly together and accepting of her condition. In fact, with her recent transplant (just 8 weeks ago), she opted to replace her small intestine only, so that she can eat food and absorb nutrients but still has a stoma -- these surgeries are apparently much safer than transplants involving the large intestine. Randy and I are surprised to learn that Max could still have a stoma even if he does receive a transplant. But she provides all the perspective we could ask for -- she's had a stoma all her life, is completely comfortable with it, and has no problems waiting for medical technology to advance to the point where she'd consider a large intestine transplant.

Max continues to grow increasingly cognitive and social. He completely lights up when he sees baba and jiji, even if he doesn't fully understand our grateful descriptions of the plentiful, delicious, healthy, comforting dishes we've been enjoying from baba all week long!

Mon Aug 14, 2006

We make it to Pittsburgh! Many jumpsuits are involved. After much conferring and prep by Max's Denver team and transport team, beginning at 2:30 am, we then breeze through just a few minutes for boarding and taking off in the Learjet. Max is definitely a rock star! He sleeps soundly for almost the entire flight, waking just to clear his ears (via cries and yawns) during descent.

It's always hard transitioning to a new place, where people don't know Max. When we come back to his room after an xray and ultrasound, a "clear lunch" tray has been left for him: soup, jello, and ginger ale. We relish the idea of Max wanting to hear this story over and over again in a few years. ("But I was just a BAby!") I end up calling nurse practitioner Lizz back in Denver for reassurance on a couple things (delays in Max's IV nutrition and antibiotics), which she thankfully provides.

Max settles into his new digs pretty well, expertly finding his rhythms with his old routines (a bath, empty nursing) and adapting very good-naturedly to new procedures (like the ultrasound -- the technician marvels at how easy Max is, as he happily coos and smiles at his new mobile throughout the procedure, which serves to plot out his blood supply for consideration for surgery). But it ends up being a pretty disorienting day for Randy and me. The main folks who would help us get oriented are apparently the PAs (physicians' assistants), and they aren't around today for some reason. Most everyone else is consumed by a major tranplant operation -- a very abstract concept that we can't quite grasp the reality of yet. And we're going on just a couple hours sleep. Tomorrow should be better.

Tue Aug 15, 2006

Today is not better, at least at the start. We wake @4:30 MST to try to be there for Max when he needs us. But after learning we've just missed the hotel shuttle and then waiting for a cab that never shows, we arrive at Max's room to find that he has already been taken for upper GI xrays. When we find him, he's crying up a storm. This constricts the pyloric valve from his stomach to his small intestine, preventing movement of the contrast agent and prolonging the test. Only one parent is allowed in the room, so I end up listening to his cries through the door. I knock on it periodically and call out to see if I can switch with Randy, but no one responds.

One of the techs eventually opens the door so Randy and I can switch places. The room is loud, not just with Max's cries, but with the din of equipment, and I quickly understand that no one could hear my calling from the other side. I rush over to comfort Max, but he's enclosed and suspended in a clamp device, and I can see only the top of his head. I have to ask the tech how I can even comfort him, and am instructed to hold his head and hands (which are clamped up by his head), and to talk with him. It is a horribly helpless feeling having access to only a few inches of Max, but he makes me feel magical -- calming instantly to my voice and touch, and remaining mellow for most of the remainder of the lengthy procedure.

The afternoon goes much better. Max takes very well-deserved naps on each of us, and wakes in a delightful mood that lasts the rest of the day. He smiles and flirts shamelessly with the endless stream of people who comes to evaluate him -- nurses, occupational therapist, physical therapist, IV team, case manager, etc.! We'd like to think that his heart is still true to Nurse Becky back in Denver. And Nurse Heather. Michelle too...

Max's tests seem to be going well. No red flags have come up so far across his numerous monitorings, ultrasounds, and X-rays. The cardiac doc makes us feel wonderfully healthy -- asking about all kinds of potential issues in Max and in our histories, none of which apply. The OT is amazed by how completely normal Max's oral motor skills are. He shows off how he can happily drink from a bottle and suck his pacifier. (He doesn't get to show off how well he can nurse -- that would be the lactation specialist's evaluation). The OT says she has never seen such abilities in a baby with serious gut issues. She had assumed she would be recommending some kind of therapy for oral aversion and coordination problems -- just a question of how much and what kind. But Max doesn't need any. We're so grateful that he has been bottle feeding and empty nursing, at Denver's strong encouragement. These behaviors had been discouraged back in the days when the Boulder 17-year-old with Hirschsprungs was a baby.

Just as the day seems to be winding down, we get two last bits of excitement. The first is that Max's broviac -- the source of the vast majority of his nutrition, fluids, and meds -- stops working. Part of the inner catheter has shattered and needs to be replaced. The IV nurse struggles to thread the tiny tubing, but then Dr. Ed Barksdale walks in to meet Max. He is a trainee of Morrie Ziegler back in Denver, and has a similarly calm and wise manner about him. Everyone seems to breathe a sigh of relief when he arrives, and Max's tubing is fixed soon after.

The second excitement is Max's first Pittsburgh visitors!: Ken Koedinger (one of our best buddies from grad school days) and Anna Fisher (who we are meeting for the first time, but who knows all about Max and our recent lives via the blog). Max initially gives them the cold shoulder, when he hears that Ken is not up-to-date on the blog. But he soon decides that they are worthy of charming -- he shares his smiles and attention, and soaks in the oohs and ahhs.

Wed Aug 16, 2006

Today's big event is a liver biopsy. A quick procedure, but Max can't eat anything until it's over, and it keeps getting pushed back later in the day. He doesn't fuss from hunger though, enjoying a sleepy morning and an awake, relaxed afternoon. The biopsy finally happens at the end of the day -- results back tomorrow.

Still sedated after the biopsy, Max sleeps through a visit from our Camelot-era friends, John and Barb Pane, and their son Lorenzo. At dinner, Lorenzo sings several songs for us to sing to Max later. He suggests that Max will sing these songs himself one day ("maybe when he's 4, like me"). A beautiful thought.

Thu Aug 17, 2006

Once again, Max can't eat anything until after a procedure that keeps getting pushed back -- this time it's a surgery to replace his broviac line. Although the inner catheter was fixed a couple days ago, the broviac later got dislodged from its insertion point at his skin, and needs to be redone. This is the same surgery Max had when he was ~1 month old, and should be simple.

Like the Denver team, the docs here repeatedly emphasize that medicine is an art, not a science -- a continual weighting of probabilities, rather than black and white answers. We see this point across the many different opinions we encounter on matters big and small. On just the broviac: The surgeons here prefer broviacs in the chest (to reduce chances of contamination from bodily fluids), but they will replace Max's broviac in its current position in his thigh (the location preferred by the Denver surgeon, to reduce chances of Max grabbing and yanking it out). The Denver nurses dress broviacs with a clear sticky covering (tegaderm) placed over the tubing just below the point of insertion, with a bandaid over the insertion site, to allow this area to breathe. The Pittsburgh nurses cover the insertion site with tegaderm. Randy and I are so accustomed to the Denver method that we literally gasp the first time we see the Pittsburgh method. The nurse explains that the tegaderm breathes and keeps everything sterile, while the darkness of the bandaid might allow bacterial growth. The Pittsburgh nurses gasp back at us when they hear that we've been giving Max full-dunk baths -- strictly forbidden at Pittsburgh, to prevent contamination of his broviac. But then a couple of the Pittsburgh surgeons says baths should be fine...

Other gray areas: Most of the Pittsburgh team favors feeding Max more breast milk (to stimulate adaptation and confer immunological benefits), while the Denver team and Dr. Barksdale favor formula (to maximize the nutrition Max absorbs through the gut). The hopefully happy compromise is to give half and half in his continuous g-tube feeds (which had been entirely formula -- fiber will also be added to slow transit time and increase absorption), switch his occasional bottle feedings from formula to breast milk, and continue with the empty nursings (which are never truly empty). Perhaps the most dramatic gray is in whether to remove Max's distal bowel. Most of the Pittsburgh team says no, to maintain the size of Max's abdominal cavity to support an eventual transplant. Dr. Barksdale says yes, to reduce the risk of infection in this vulnerable organ. Everyone agrees on the pros and cons -- it's just a question of weightings. The resolution seems to be to keep an eye on things for now. Max's infections have been caught very early using systemic antibiotics, without sepsis (spreading to the blood). Should that ever occur, it would shift the weighting toward removing the distal bowel.

Max is finally called for his broviac surgery at day's end. We learn from the surgeon, Kyle Soltys, that yesterday's liver biopsy looked good -- better than what they expected based on Max's bilirubin and other tests! This buys us more time before a transplant would be needed. We run into friends Ken and Anna on our way to the pre-op area. Their presence nicely prevents my usual pre-op meltdown, and satisfies Max's usual pre-op desire to socialize.

Max's schedule is always unpredictable. Our sailing friends, Anne Fay and Guy Blelloch, meet up with us in the surgery waiting area and set the record for the longest wait time to meet him -- ~3 hours! Our reminiscences of rum punch days island-hopping in the Caribbean serve as pretty good distraction when the estimated 20 minutes for Max's simple surgery comes and goes. An hour and a half in, we get a call saying that the surgeon is having trouble finding a good route for the catheter -- he wants to go further from the groin than the original route. Forty-five minutes later, we get the call that Max is ready. His face is bright red (a common reaction to the anesthesia), and he is crying unconsolably -- a hoarse cry after being intubated for the procedure. He eventually calms with some pain medication, which apparently is not given until kids demonstrate that they need it. Our friends come in for a quick peek at him, finally tucked in and cozy. Randy and I decide to stay overnight at the hospital to keep an eye on his pain. I fall asleep listening to Max contentedly sucking his pacifier. Another deeply appreciated, simple pleasure.

Fri Aug 18, 2006

Randy gets up a few times to soothe Max, but overall it's a smooth night and Max wakes up happy. After giving up on Pittsburgh cabs, we discover that the walk to and from our hotel (for checkout) is quite pleasant.

Our trip ends the way it was supposed to start, meeting with Bev, the transplant coordinator. (She was too busy earlier, catching up after the camp they run here for kids with transplants.) She starts off by saying that her ideal transplant parents are in their 30s, have been together a long time, communicate very openly, and can find ways to laugh in the face of stress. We feel like we pass.

Bev gives a 2.5 hour presentation, filled with details about transplant and post-op processes, scary statistics and relevant reassurances, and uplifting anecdotes and photos. The post-op process is extensive, with constant monitoring and adjustment of immunosuppressants to control the body's rejection of the transplanted organ, without rendering the body too vulnerable to infection (click here for details from Randy). This process is definitely a marathon, not a sprint. Scary stats include the fact that 40% of children on the transplant list died waiting for the organ(s) they needed, and for children who receive transplants, survival rates drop noticeably each year post-transplant. Reassurances: Dying while waiting was driven in part by people historically joining the list relatively late in the course of their illnesses, and having only a small window when they could be transplanted. This is changing, and Max will join the list quite early (next week -- we'll know more about his status on the list when this happens). Still, everything clearly depends on parents being willing to donate organs when children die, as well as doctors knowing that intestines can be transplanted -- such awareness is apparently not universal, since these surgeries are new. The drop-off in survival rate reflects the fact that better techniques are always being developed, particularly for immunosuppressants. People with more time post-transplant were operated on using earlier techniques. Success rates with today's techniques are much better. Bev shows many photos of happy, healthy kids from their transplant camp. We recognize one of them as Max's roommate from earlier in the week! He is 11, and had his transplant 10 years ago. In those very early days of these surgeries, he was the only child out of 7 on the list to survive, which he told us he finds "kind of weird."

Bev's presentation is as draining as it is informative. We don't get many opportunities to demonstrate our abilities to laugh in the face of stress. We do get answers to all of our questions for the time-being.

Overall, we feel energized and empowered by our time in Pittsburgh. Max has amazing teams of people looking after him. Treatments have come a long way in a relatively short time, and Max is doing well. Many discussions have focused on what it will take to get him home while he awaits a transplant. This is the most wonderful thing we can imagine. One step is to reduce his dependence on TPN (IV nutrition) -- Pittsburgh has already cut 4 hrs/day of it, which Max seems to be handling just fine. In fact, his final bilirubin test today is mysteriously much better than his tests earlier in the week. Many of the steps Pittsburgh has initiated -- reduced TPN, increased feeds, addition of fiber -- should help with this gradually, but the docs haven't seen this kind of dramatic improvement before. Randy and I allow ourselves to feel only cautiously optimistic while we see how it all sorts out. We've been trying to swing neither too high with our highs nor too low with our lows in this long process, a sentiment echoed by Dr. Squires, the main GI doc here.

This trip was too hectic for Max to get to meet all our friends or for us to visit our old haunts. Next time. The flights home (with a stop for refueling in stormy Salina, Kansas) are uneventful. Max is an easy traveler -- mostly sleeping, with one stretch of alert time checking out the jet and smiling at the nurses. A "Welcome back" sign greets us in his hospital room in Denver. Far from the home we had envisioned, but it feels so good to be back.

Sat Aug 19, 2006

Yuko stayed home (to update everyone on Pittsburgh and make room for all the visitors in Max's tiny room today), so Max had some big adventures with Daddy! He met aunt Katie (visiting from Portland), and enjoyed the usual lunchtime with big people eating (including Nana). He also received a special knit cap from Erica, our former next-door neighbor in the NICU, who warned Yuko about her postpartum checkup. Then the real fun began. We put Max in his stroller, and took off on a trans-hospital adventure to see his old digs at St. Joe's. This is possible because of his new 4 hr break from TPN! We ran into Barb & Judy and several other of Max's old friends. He didn't seem to remember his room, and in general was somewhat sleepy for the entire visit -- he almost managed a smile for Barb with some strong prompting from daddy. On the way out, we ran into Dr. Ziegler and brought him quickly up to date on our Pittsburgh visit. As we were checking out the fish tank downstairs back at Children's, I got a call on my cell phone -- it was Nurse Michelle wondering why in the heck we hadn't heard all her pages for us to return to the unit for Max's 2pm antibiotics round. Ooops. Turns out that this kind of off-campus excursion is strictly against Hospital policy! So much for our many plans for trips to the zoo, aquarium, butterfly pavilion, home...

Sun Aug 20, 2006

We stay on hospital grounds today. I can't get over the fact that I missed Max's single day to go anywhere he pleased, and Randy took him to a hospital!

Throughout my pregnancy, our 5-year-old nephew Toshio talked about how he was going to "teach Max crazy." He's back in nearby Golden after his summer in Germany, and he's ready. He persuades Randy (it doesn't take much) to chase wildly after him through the hospital, with Max in tow in the stroller. Max looks distinctly unsure what to make of it. When I suggest that they stop, Toshio pleads with me, "But Max WANTS it. He NEEDS it." Toshio also asks whether Max has pooped yet. His mom reminds him that Max has a different way to poop. Oh yes, Toshio's parents are there too! So Max meets Auntie Junko for the first time and sees Uncle Dave for the second time. Watching Max and my sister gaze lovingly at each other takes my breath away.

Randy and I repeatedly mix up Max and Toshio's names. It seems bizarre, but Toshio is the only other person we've known from the moment he entered the world. I completely forgive my mom for confusing Junko, Yuko, and Naoko (though I think Naoko still harbors some resentment for later being confused with our cats).

Max starts on his breastmilk-formula-fiber mix today. He was on pure breast milk all day yesterday because the fiber and formula weren't ready yet. He did just fine.

Back at home, Randy and I are treated to supremely tasty corn-cilantro-smoked gouda tortillas from Katie, and to more-than-relaxing massage sessions with Nana. Her intuitive fingers find and release all our knots and blockages -- our repositories of grief and stress. Mine are more subtle than Randy's, she says, but they're there. She can do amazing things to restore energy and flow in even just a couple minutes. Word is spreading quickly among Max's nurses...

Wed Aug 23, 2006

Max has been in a serious mood since our return from Pittsburgh, but today he bursts into enormous smiles for visiting Nurse Gretchen (who first checked him into Children's 2+ months ago). Much flirting ensues. We continue to debate who Max inherited (or learned) such behaviors from.

Big news: September 6 -- just 2 weeks from today -- is Lizz's target date for us bringing Max home! The goal is for him to await transplant here, with lots of support via a home health care system coordinated with the hospital. We are trying not to get too attached to this date or even to this idea, since things are always so unpredictable. (Just yesterday, I was unable to take Max for his outing because so many issues and corresponding procedures came up throughout his 4-hr free window -- all eventually resolved just fine.) And, the GI team hasn't weighed in on the date yet. Still... Max leaving the hospital! We can't help but dream about having him home.

No news: Kyle Soltys and the Pittsburgh team emphasized repeatedly during our visit that the transplant list is dynamic. It's very hard to interpret your number on the list, because you could suddenly be bumped up much higher -- for example, if kids above you happen to be sick so that they cannot receive a transplant right then. You just never know when you might get the call. We thought we understood, and figured we would keep these caveats in mind upon learning Max's number on the list. Now we understand that we will not learn where Max is on the list -- we've been told it's just too dynamic to worry about.

Sheepish news: Randy stuttered a couple weeks ago and referred to Max as Mack. I had thought/hoped it would pass, but it seems to be catching.

Thu Aug 24, 2006

Max is progressing faster than the final steps of our house renovation! His feeds have been increased gradually all week, starting from the 2 cc/hr that Pittsburgh had him on and going up to 5 cc/hr today, his highest yet! And unlike his feedings before this week, Max actually seems to be getting something from these, outputing less than he is taking in. This improvement could reflect the addition of fiber in the mix, to slow transit time and increase absorption, and the fact that Max now has normal (post-infection) CRP levels. It could also reflect some gut adaptation, and should stimulate more. This process could ultimately reduce his dependence on TPN and the urgency of a transplant. Go Max! C'mon, house! Max has waited long enough for your dust to settle.

Mon Aug 28, 2006

Today is Max's 3-month birthday! He has been celebrating over the last few days, by:

Tue Aug 29, 2006

Two big -- if somewhat conflicting -- developments!: Max has 2 teeth coming in! (This counts as one development.) Quite early, but within the normal range. Teething tips welcomed for this precocious boy!

And, for the first time ever, I get to nurse Max tonight -- not empty nursing after pumping, but true, gloriously unrestrained nourishing. When Lizz said this afternoon that I could, I had to look at my palm to see whether I was dreaming. (You can't see the lines if you are.) Max's eyes seem to open wide at the start, then he quickly settles into looking even more blissed out than usual. I certainly am.

Sat Sep 2, 2006

Max won't come home Sept 6. He spikes a high fever this morning. Results from various tests come in across the day, indicating that he likely has a bacterial infection, which entered his blood (this has not happened with his previous infections), but not his central nervous system (a big relief). He will remain in the hospital through his antibiotics course. A broad spectrum set is started immediately -- this may change to a more targeted 7-10 day dose as the results from his cultures come back over the next several days. His distal bowel is a likely culprit -- we will revisit the possibility of removing it to reduce the chances of these infections.

When my mom visited, she mentioned how hard it was to hear about Max's infections from a helpless distance, and how much better it was to see all of his strength and happiness and affection in person. I feel this on a smaller scale even just stepping out to eat. The cashier asks how Max is doing, and I have to fight back tears. It's a somber, solitary lunch on an unusually dreary Colorado day. But my heart leaps as soon as I come back to Max's room, seeing him laying on Randy, gazing curiously at his sleeping Daddy. And after Max's unhappy morning, it brings immense joy to watch him taking obvious comfort and pleasure in nursing, followed by burping, and then lighting up with smiles for everyone (perhaps with some help from his tylenol and antibiotics kicking in). He even tolerates his spinal tap at day's end, once he is released from a curled position after the needle is inserted.

As always, Max is in great hands, as are we. In the morning, Nurse Becky (the self-proclaimed favorite nurse of Max's!) catches his fever quickly, gets tests and treatment started right away, and walks us through each step. In the evening, Nurse Michelle (another strong contender!) comes in to do one of her expert bag changes for Max. She sees me holding him after his spinal tap, and recognizes that I need this at least as much as he does. She delays to give us our time together, and then stays late for Max. Around the clock, expert teams consult on each aspect of Max's care.

Mon Sep 4, 2006

Max takes off just one full day (yesterday) to sleep and recover and fuss a bit, then resumes charming nurses with his smiles this morning and nursing this evening. His specific bacterial strains get identified from his Saturday cultures, and his targeted antibiotics course begins tonight. All his numbers and behavior show that he is already well on the way to recovery, thanks to his broad spectrum antibiotics and perhaps some from his immune system, but the targeted antibiotics will just make sure to finish the job.

This positive turn of events gives us a much needed breather after the stresses of the past couple days. We can now better appreciate Max getting to meet Auntie Naoko and Uncle Mike (visiting from LA for the long weekend), and the humor in Randy cautioning them to not get Max too excited at night. Randy has a long history of overstimulating other people's kids around bedtime, as a way to help "tire them out," despite their parents protestations...

Sat Sep 9, 2006

September 18 is the new date to not get too attached to, at least as of yesterday. Max is recovering well from his infection. His antibiotics will run their course through the coming Wednesday, then the GI team wants to watch things for a couple days. They won't discharge him on a weekend, so the following Monday (the 18th) would be the earliest we could bring him home.

No one seems ready to proceed to removing Max's distal bowel. There's still no word on a care conference to discuss his options, but various members of his teams have weighed in individually, indicating they'd like to hold off on this surgery for a number of reasons. First, it's a major surgery, so everyone would like to see Max make it to transplant without needing it if possible. Second, people seem confident that Max's distal bowel infections can be managed as they have been -- through careful monitoring and quick treatment. The GI team apparently manages a lot of "gut kids" in this way, and in places more remote than Boulder (e.g., in neighboring states). Third, one of the main concerns with these infections is the potential hit on Max's liver, but it seems to be doing alright. His numbers were actually slightly better on Monday, and then a bit worse on Thursday, but all within his previously observed range.

Sun Sep 10, 2006

Max knows how to get what he wants. We often walk in to find several nurses gathered around him, taking in his smiles and coos. And he has perfected a little pout for when he's not being sufficiently entertained. Today he discovers the best attention-getter yet -- tugging off the little stickers on his chest, which attach the leads for his heart and respiration monitors. (He doesn't need these, but they are standard issue for all the kids here. He didn't have them in Pittsburgh.) Removing the leads sets off loud alarms and brings nurses rushing in, where they find Max laughing -- incriminating evidence in hand -- on two separate occasions this morning. We wonder whether he will be bored with just us at home.

Thu Sep 14, 2006

"You just never know." This is the mantra of Max's Auntie Naoko. Her partner Mike kids her about this, throwing the phrase back at her in opportune moments, like when she wonders aloud whether to take a particular parking spot. Randy has decided that my dad's phrase is: "There are many factors." Both can be used for almost any occasion.

We don't know whether Max will come home September 18th. After his recent infection, we thought that surgery to remove his distal bowel was very likely, since this should decrease his risk of infection. Then everyone seemed to argue for holding off, so we wrapped our minds around that plan. But this Monday, Lizz announced that the surgery was likely, based on conversations between Dave Partrick (the Denver surgeon) and the Pittsburgh team. On Tuesday, we learned that these conversations were with Ed Barksdale, the sole member of the Pittsburgh team who has argued from the start for removing the distal bowel. Other doctors there had argued for waiting on this surgery, because it could increase the difficulty of transplant -- due to the resulting reduction in size of the abdominal cavity (and possibly the disconnecting of the blood supply to the intestine). Now we're waiting for consultations among more members of the team, to see if consensus emerges.

There are many factors. As usual, everyone seems to agree on what they are -- it's just a matter of weightings. If Max doesn't have the surgery, we're so excited to bring him home quite soon. If he does have the surgery, we're eager to see him through that and then bring him home. Big ifs. Then there's the question of when we'll get the transplant call. We'll always have a packed suitcase ready. You just never know.

Fri Sep 15, 2006

Randy, Lizz, and I talk with Dr. Mazariegos, one Pittsburgh transplant team member who had initially argued for holding off on the surgery to remove Max's distal small intestine. He indicates that there is now consensus to remove it, given the recurrent infections and their clear impact on the liver. The abdominal size issue is not as important as maintaining a healthy liver, and disconnecting the blood supply turns out to be a non-issue -- transplants are equally successful when using the intestinal blood vessels when available, or using alternative vessels when the intestine has already been removed. Max is scheduled for surgery Thursday.

It's especially hard to think about him undergoing another major surgery now that he is so social (smiling, "talking," singing, flirting) and so cognitive (actively taking in each picture in Brown Bear, Brown Bear, What Do You See, listening intently as Randy and I chant Snuggle Puppy lines from memory). But we will see him through this, taking comfort in thinking about the surgery reducing his risk of infection and easing his transition home. (Our house may very well be done in time. Max knew better than to take our general contractor's July 1 date seriously, let alone Daddy's always-optimistic June 15th estimate -- "it can't possibly take as long as they think!" Mama's "pessimistic" estimate of Sept 30th may be pretty close...)

Sun Sep 17, 2006

Max meets our friends Jerry and Julie Rudy. (Jerry is a close collaborator of Randy's. His southern twang provides a constant reminder of how I spoke as a child, growing up in his hometown of Petersburg, Virginia -- before having the accent teased out of me by Minnesotans, of all people.) They elicit smile after smile, and one very satisfying burp. Max tries on (and kicks off) his first pair of shoes. We chow down on a big barbecue dinner. Jerry and Julie do not comment incessantly on Max's cuteness, but Randy says later that I pretty well covered that ground.

Mon Sep 18, 2006

Our morning emails bring word that Max is being prayed for by a prayer group, an agnostic, and an atheist. His surgery looms over us, but he just happily progresses along -- upping his feeds to 13 cc/hr and absorbing them relatively well, getting hefty enough to start limiting how long we can dance with him, delighting in Daddy swinging him up to the ceiling, and beaming at mama zooming in to kiss him again and again.

Thu Sep 21, 2006

AM

Max's surgery is still on for 3:15 this afternoon, and should take 2-3 hours. We know to not get too attached to either estimate. We also know that these will be grueling days for us. We'll be unable to hold Max for at least a day after surgery, then will likely wait for weeks as he gradually recovers from the surgery, progresses back up to his current level of feeds, etc. But his amazing team (starting to collect photos here) will see him through. They've had extensive discussions to ensure that he will be comfortable post-op, using a combination of IV ibuprofen to reduce swelling and fentanyl to block pain receptors. (Although the epidural worked great for Max's last major surgery -- once it got working -- the 24-hr process of getting there was too excruciating for anyone to want to touch that option again.) In the grand scheme of things, it won't be long before Max is once again laughing in glee and anticipation as Daddy bounces him on his lap and kisses his toes.

PM

Max's surgery goes "perfectly." It starts not too late (~4:30) and is over by 7:00. There are no complications. The surgeon notes that Max's functioning intestine has clearly grown (happy intestine adaptation!). His non-functioning intestine is small, so its removal should not have much effect on transplant plans.

Max's pain management in the hours post-op has been a bit tricky again, with trying to find the right dosing and mixes, but nothing like the horror of his last surgery. Now he is sleeping soundly, and from the looks of his rhythmic sucking, dreaming all about mama...

Fri Sep 22, 2006

AM

Max had a great night until he stopped breathing. This is what Nurse Lisa tells us when we call at 6:30 am. She was right there when it happened, having just poked his heel for some lab work. She was able to administer oxygen immediately, using the oxygen mask stored 2 inches from his face for exactly this purpose, because apnea is a known risk of fentanyl. Often kids will start breathing on their own after a few puffs, but Max did not. So Lisa kept the oxygen mask on. The surgical team happened to be rounding then, and instructed her to give narcan. This immediately cancels the effects of the fentanyl -- so Max resumed breathing, but also opened his eyes in sudden realization of his pain. He was given a bollus of fentanyl, and his drip fentanyl was resumed at a lower rate. He was resting comfortably pretty soon after, probably aided by the ibuprofen and atavan (given to take the edge off) in his system -- their effects are not canceled by the narcan.

Pain management is a tricky business. We are reigning in our inclinations to maximize doses to minimize Max's pain. Last night, we watched in pure appreciation as his fentanyl was gradually upped to the high end of the recommended range, since that's what it seemed to take for him to get comfortable (and allowed him to sleep and recover for most of the night). Now the tradeoffs are more obvious. Thankfully these were quite clear to Max's team from the start, so that they were positioned to immediately address problems and find a better balance.

On our way in, we run into Erica (our former NICU neighbor), who has just stopped in for a cardiac checkup for Annabelle. They've been home for a week. Erica warns us that it's not all roses getting your baby home -- she's frequently up all night, overwhelmed with constant feedings and pumpings, and struggling to find time to shop for baby supplies. But she looks more alive and invigorated than we've ever seen her. We can't wait to share her complaints.

PM

For most of the day, Max recuperates comfortably -- the fentanyl has him pretty much out of it. But in the evening, he starts getting a little too relaxed. His blood oxygen drops as his respiration and heart rate slow. Nurse Linda quickly "bags" him, giving him an oxygen boost with his nearby mask, and Max comes around quickly. We've never seen anything like this, because Max didn't have any breathing issues after his epidural surgery, and he was intubated with oxygen for days after his St. Joe's surgeries. Seeing our alarm, Linda reassures us that this is very normal with fentanyl -- not at all scary. If it were scary, she'd be calling out for help.

Twenty minutes later, Linda calls out for help. Then again 20 minutes after that. The night nurse does the same thing a couple hours later. Each time, it's the same story: Max goes limp, and his blood oxygen, respiration, and heart rate drop and do not respond to his oxygen boosts. Randy and I plead with him -- please Max, breathe, deep breaths Max. The resuscitation team comes briskly but calmly with their emergency cart. They are always ready, but Max manages to come around on his own each time.

Randy and I had braced for grueling, but had no idea. We've always been on the other side of pain management, trying to calm Max when he is hurting. Now we're trying to rouse Max when he's too relaxed. His team is titrating constantly -- his fentanyl rate has been dropped throughout the afternoon and evening. It will take some time for his stores to clear out of his system, getting him away from too relaxed, but hopefully not too far from comfortable.

Having Max intubated after his St. Joe's surgeries was so much easier on us. But Children's prefers to avoid the potential discomfort and stress of extended intubation, and provide oxygen as needed. What feels unbearably terrifying for us is just standard management for them, and probably not much of anything from Max's very relaxed perspective.

Sat Sep 23, 2006

AM

Max has a great night! The nurses do not need to call out for help again. All of his vital signs are good and stable, and he looks comfortable. His current low rate of fentanyl (1 mic/kg/hr) seems just right.

PM

Max continues to rest comfortably and stably. He opens his eyes briefly and watches while I change his diaper. He's groggy, but seems to appreciate hearing about how much mama and daddy love him and what a good job he's doing.

We come home early because Randy isn't feeling great (and so isn't spending any time near Max). Turns out he has a temperature of 101. He sleeps while I direct my energies toward some healing TLC: delivery dinner from Ping's! (Boulder does actually have good Chinese food -- you just need to order from the authentic menu.) We've been amazed at our health thus far, but yesterday was too much. Now we'll all focus on rest and recovery.

Sun Sep 24, 2006

Max has a few episodes overnight of pain breaking through his medication (which Nurse Becky treats quickly with small bolluses of fentanyl), followed by another relaxing day. He sleeps in our arms for the first time since surgery. His gaze is a little less groggy (his fentanyl rate is down to .5), and he manages to give us a half smile. It's the most beautiful sight in the world.

Even in his subdued state, Max shows fiesty signs of wanting to move on. He yanks out his nasal canula, which had been providing minimal amounts of (no longer needed) oxygen. He pulls at the IV in his hand with his mouth. He uses one foot to try to kick the pulsox off his other foot. (Speaking of which, some reassurances about Max's oxygen drops on Friday: He is not at risk for any long-term effects. The pulsox is always positioned peripherally. This allows it to be highly sensitive to any drops in oxygen, because the body reacts by shunting oxygen centrally to protect the brain. So, Max's oxygen drops could be caught and addressed immediately. These were horrifying seconds for us, but they were only seconds, and seconds where his toes were providing the early signal of wanting more oxygen.)

We're ready to move on too. The frenzy of the NICU has been jarring after the relative homeyness of the longer term care area. The contrast reminds me of touring the NICU just before transfering from St. Joe's. Our guide made an offhand remark about how Randy and I would go on a date again down the road. The idea seemed inconceivable in the face of Max's needs -- even offensive to suggest and appalling to consider. We have come a very long way since then. We recognize the need to find a balance between frenzy and normalcy, and will prove the tour guide right someday.

Mon Sep 25, 2006

Max is back to his old tricks. He moves on to full smiles with Nurse Becky on the night shift, to laughs with Nurse Katherine in the morning, and back to his homey room and a Snuggle Puppy reading from Daddy in the evening. He's off fentanyl and back on feeds (starting at 5cc/hr), and seems fine with both.

Randy is also better, as he has been since Sunday morning. He suspects he had a case of mild food poisoning. (No, he didn't eat spinach. Just cafeteria food, ad naseam.)

Tue Sep 26, 2006

We get the dreaded phone call in the middle of the night. It's 2 am, it's Nurse Becky. Max has a temperature of 38.2, his abdomen doesn't feel nice and soft like it has been, and he has stuff coming out the top end of his (now very shortened) distal bowel. He is moaning and looks like he feels crummy. All are possible signs of infection -- a risk with any surgery -- but they could also be just standard consequences of undergoing surgery. Chest and abdominal x-rays are ordered, along with the standard cultures and tests, and broad spectrum antibiotics are started. The second call at 3:40 am indicates his x-rays look normal. The third call at 4:15 indicates his blood cell count (which has given clear indications of all his previous infections) looks normal too, and Max is back to smiling. So it doesn't seem like he has an infection -- but we need to wait to see if the cultures grow any bacteria.

Randy does a heroic job falling back to sleep after each call -- a handy skill for when we get Max home, and one I need to work on.

Wed Sep 27, 2006

Nurse Becky is trying to wean us from our habit of uninterrupted sleep. She calls ~6am, to let us know that the peripheral blood test has started to grow a type of bacteria that will be treatable with the antibiotics that were started yesterday. Oddly, the central blood test is still negative. At least this is odd to us -- we don't understand how one part of the blood supply could be infected while another part is not. The only possible explanation we receive is "measurement error" -- Max may not have an infection, so the central blood test would be correctly negative, but the peripheral blood test may have become contaminated somehow during testing. We can understand the logic of this explanation. But, people seem to think it is unlikely, without offering alternative explanations.

The bottom line is that Max will be fine. Either he has an infection from surgery that is being treated, or he has no infection. For his part, Max isn't thrilled about having to undergo another precautionary spinal tap this afternoon (which looks fine), and his sleep schedule has gotten a bit off track. He charms us with smiles and conversation anyway, and takes in the brilliant fall leaves on his first post-op stroll.

Thu Sep 28, 2006

Max is fine. (On the few occasions when the hospital has called, getting our hearts racing, we've always appreciated them starting off by saying this when they can.) He celebrates his 4-month birthday by convincing everyone that he has no infection -- the scare of Tuesday morning was a false alarm. His initial central blood test hasn't grown any bacteria, consistent with the initial peripheral test being contaminated. The subsequent central and peripheral tests (taken yesterday) are also not growing anything. His shameless flirting certainly suggests he is back to his old self.

So his feeds are resumed, and I get to "empty" nurse him. The quotes are relevant. We've discovered -- by weighing Max before and after -- that he can get as much milk from these empty nursings as from regular ones. This boy knows how to get what he wants.

I'm caught off guard by how old Max seems -- a 4-month-old boy! Everyone talks about how quickly this time flies by. Apparently even in the hospital.

Fri Sep 29, 2006

Max's blood cell count and CRP measures look great, giving final confirmation that he did not have an infection. His antibiotics are stopped. We breathe a collective better-safe-than-sorry sigh of relief. The nurse practitioner wants to up his feeds from 5 to 6 and gradually increment to 10. We invoke the "What would Lizz do?" line of argument, to get the plan changed to go up to 8 and aim for his pre-surgery level of 14 sooner rather than later.

Yes, Nurse Practitioner Lizz, the most regular presence in Max's medical life, is gone. She left Children's this week to spend 6 weeks at a hospital in Fort Collins. Although she reassured us that we could call her (like we did practically every day when we were in Pittsburgh), Randy and I feel not just a little lost around this development. For the last several months, Lizz has tracked all of Max's numbers to determine the details of his IV nutrition, fluids, and feeds. She argued convincingly that once Max came through the general effects of this surgery, his feeds could be aggressively advanced because his functioning intestine was untouched.

But in some ways the medical details were the least of it. Lizz was a consistent force in poking fun at Randy for graphing every possible permutation of Max's numbers. She showed us how rambunctious we can be with Max, and how much this makes him laugh. She knitted a cheery hat for Max to grow into over the next several years. She even came up with her own special song that she always sang for Max. (At least, this is what we heard from one of the nurses, who is apparently too young to know about this group called the Beatles.) While Max has quickly moved on to flirting with the new NPs, we'd like to think that he has a special place in his heart for Lizz.

Sat/Sun Sep 30- Oct 1, 2006

Everyone is talking about getting Max home. Morrie Ziegler thinks he looks great, and asks what people are waiting for. Our driveway and front porch should get poured this week for a proper welcome.

Max seems ready for a change of scene. When he was being held earlier in the week, we heard that he would very willfully cry whenever he was moved toward his crib, and smile whenever he was moved away from his crib and toward the action. Quite effective. His sphere of boredom (and associated strategic crying/smiling) now seems to have expanded to encompass his entire room.

Our colleague Akira Miyake visits and is suprised by how small the room is -- a universal reaction. We discover with Akira's visit that there are people Max will not flirt with. Guys with beards? People who refuse to use infant-directed speech? Akira skeptically asks to see a demonstration of Max flirting with the nurses, but we suspect ulterior motives and decline.

Mon Oct 2, 2006

We're getting closer to invigorated exhaustion. In preparation for being home with Max, we "room in." This means moving Max for one night to a room big enough for a couch -- a small, hard couch -- which Randy and I try to sleep on. Max wakes around 1 am and Randy soothes him back to sleep. I figure I'll get the next one, but it doesn't come until the perfectly decent hour of 7. We're there to watch Max as he falls asleep, and to watch him as he wakes up. He watches us watching him. We could get used to this.

Wed Oct 4, 2006

Everything feels more meaningful as we prepare to leave the hospital. The doll house in the lobby, which has provided Max's only exposure to the concept of a house. The look from a mom pushing her baby on a throne-like high chair, configured with oxygen and various bulky devices. She fixates on Max in his seemingly normal stroller set-up, and I want to say "No, look." and reveal his broviac.

We make our usual visit to the Rube Goldberg ball contraption. It's a popular stop, with its dramatic loop-di-loop tracks, high drops and bounces, and bells that ding as the ping-pong size balls pass. These things grabbed our attention for the first few weeks. But what has held our attention over the last several months is something different. You never know what will happen to a given ball on its way down. The track bifurcates at a number of points, and a swinging pendulum randomly sends balls left or right, sometimes wavering through multiple swings before committing. There are also plateaus, where a ball can hang out for seconds to hours, depending on what other balls do. Each trajectory is unique and unpredictable. I think about what ride down I would like best - the perfect combination of thrills and just cruising. But then I realize that planning the entire route would go against the whole ethos of this microcosm, what makes it endlessly fascinating, worth experiencing day after day.

Thu Oct 5, 2006

Third time's a charm. It doesn't matter that our driveway won't get poured til next week. We've been staring at that ball contraption too long. Max is 4 months, 1 week. And he's home!!!!!

We'll take some time to get settled, enjoy, and master the currently overwhelming amount of medical stuff. We will eventually emerge ready for visitors and celebrations.

Sat Oct 7, 2006

As we were leaving Children's, NP Donna urged us to try to be just parents with Max at home -- not nurses, dieticians, or GI docs. So far, that has proven to be difficult. Our waking hours (and our former sleeping hours) have been consumed with training and consulting on Max's home health care setup. In the abstract, we know this will feel routine someday.

We have caught tantalizing glimpses of the life we've been envisioning with Max. We have loved watching his endearingly groggy transitions to curious wakefulness, and even his rougher transitions to sleep. (Once he gets to sleep, he has mainly been sleeping through the night, unphased by the pump alarms that bring us running.) We savor being able to sit at our dining room table, eating cereal, with Max. And we've taken strolls around our neighborhood. These are far too exciting for Max to nap through, but nothing beats the three of us napping together afterward. Already the hospital feels like a foreign world from a very long time ago. Erica was right that it's not all roses, but how sweet it is!

Wed Oct 11, 2006

We are in awe of parents everywhere.

Fri Oct 13, 2006

Before we got Max home, I couldn't fathom how new parents struggled to find time to shower. It's only 10 minutes after all, and there are two of us. Now I can't fathom how new parents even remember to shower.

We're gradually settling into both the regular and the non-regular aspects of parenting. Randy is there for Max late at night and early in the morning, and I'm there in the middle of the night. We do bath and bedtime routine together. Randy is specializing on pumps, and I'm specializing on mixing (both IV nutrition and feeds). We do bag changes and broviac line care together.

We continue to appreciate the simple things. Cousin Toshio reading Hippos Go Berserk to Max. Max's occasional interest in our cats. Their complete terror. Max's utter fascination with our images in the mirror as I kiss him. Strolling the Pearl St. Mall. Laying anywhere with Max. Watching Max soothe himself by sucking his index and middle finger on his right hand -- sometimes trying fingers on his left hand or his thumb, but always returning to his old standby. Our first dinner out with Max. (We had hoped for somewhere casual and safe, but Auntie Junko and Uncle Dave negotiated fancy -- Full Moon Grill. We think this was an attempt at new-parent hazing, but Max breezed through it without incident.)

Randy used to harumph at my suggestions for ways to take friends up on their offers of help. Now he keeps asking when I'm going to update Max's page with this info. Soon. After a shower.

Wed Oct 18, 2006

Our pendulum continues to swing.

In terms of regular parenting: Max is alternating between great nights (waking just a couple times, easily consoled, quickly back to sleep) and horrible nights (up much of the night, crying unconsolably). Randy and I recently switched to alternating which one of us is on at night, so that at least one of us can sleep, in theory. We need more data to know whether the two are related.

In terms of non-regular parenting: Most of Max's liver numbers are holding steady, which is good. But one -- his platelet count, which is an indicator of blood flow to and from the liver -- appears to be getting worse. This test is apparently sensitive to how long the blood sample sits around (because platelets clot, so that the number that are free to be measured drops with time). We're hoping that the apparent change just reflects the fact that the home care samples sit around longer than the hospital samples did. We should know more after additional tests this week. If the change is real, it will boost Max's status on the transplant list.

A mix of regular and non-regular parenting: We learn today that the waitlist for respite care is 7 months. This is supposed to be good news -- the wait used to be 7 years. We'll need help before then. We are eager for any recommendations of nurses, nursing students, or nannies whom we might hire to provide regular help with Max's home care (or ways to reach such folks). We would tailor our presence and instruction to their skill and comfort levels. Max would presumably flirt indiscriminately (except for his possible beard restriction).

Thu Oct 19, 2006

Today is my birthday -- my best ever. Max gets us up early for it. He cries throughout the wee hours of the morning, continuing his trend of fussing only when Daddy's on duty.

The best gifts are of course having Max, and having him home. On top of that, his platelet count is redone at Children's, and looks good -- consistent with how it looked before we brought him home, rather than dropping precipitously as the home care tests had suggested. We are hugely relieved.

We continue our celebration by taking Max in to meet folks at work for the first time. We wander the halls in the proud tradition of colleagues Steve Maier and Jerry Rudy (to perhaps a slightly more receptive audience -- at least in terms of oohs and ahhs). Max confirms that he will not flirt with Akira, but demonstrates with Tim Curran and Hisham Atallah that he has no problem with beards. Rather than resort to infant-directed speech, Akira tries to curry favor by designing experiments to test whether Max's sleep patterns are really tied to parent-on-duty (looks like I'll have some consecutive nights ahead), and by giving me a beautiful calendar filled with images of Max.

Max soaks in all the attention for a good hour, and doesn't even get to meet some of his biggest fans. He clearly has options other than the hospital for when he's bored with just Randy and me.

We end the day with a delicious birthday cake from my lab, and with Max sleeping soundly (for now!) after animated evening conversations.

Mon Oct 23, 2006

So much for my expertise.

Granddad Dick calls and asks about Max's latest cognitive developments. This is the topic I've been researching for the last 15 years. I'm able to list some obvious facts: Max loves looking at stuff, reaching for things, putting things in his mouth, smiling, squealing, talking, and opening his mouth as wide as it will go, in anticipation of kisses or swinging. But I feel completely unable to express how powerful and beautiful and endearing all of these simple things are -- how they convey Max's emerging thoughts and desires, and have us falling more and more in love with him each day.

I've been giving Randy lots of advice (some solicited) based on my successes getting Max through the night: hold him snug and still, cradled in your right arm, reassuring him in hushed tones. But Max's nights may have more to do with his alternating rhythms than with our parenting. The data so far:

On the good nights, Max gets up 4 times instead of the requisite 1-2 times (which are inevitable since he needs continuous feeds and IV input -- and associated diaper changes -- throughout the night). But he's consolable each time.

My possibly-diminished status means some nights on-duty ahead for Dad. I'm happy to concede issues of expertise in exchange for sleep.

Wed Oct 25, 2006

Max sees his oldest friend today. We walk down to the phamacy for some of Max's meds - which feels like an almost-normal outing except that most of them need to be special-ordered. We pop upstairs to see Jeff Kerr-Layton, who delivered Max just shy of 5 months ago. Jeff can't get over how big Max is. Terms like "chubby" and "chunky" and "cheeks" get thrown around liberally by the staff. Yep, Max is growing well, having doubled his birth weight a few weeks back (a common goal by 6 months). His docs are happy with his growth, so they've been gradually cutting his lipids - this should be good news for his liver.

In other good news, Max has been trying to let us sleep through the night recently. But his plans have been foiled by his pump alarms (sounding at all hours) and the concrete guys (who ring our doorbell at 6:45 this morning). Luckily, our driveway gets poured before the impending snowstorm, which should keep us on track for our freezer delivery and ideas for help. Unfortunately, the storm sends Nana packing a couple days early, for her drive home through the mountains to Pagosa Springs. Not before she treats us all to rejuvenating meals, massages, and music.

Sat-Sun Oct 28-29, 2006

Max celebrates his 5-month birthday weekend with normalcy during his days and great sleep at night. We walk to the farmers' market Saturday morning, where we run into friends Marie Banich and Laura Edwards, whose soups and sauces have nourished us throughout this last month. We meet cousin Toshio and parents at the new local mall Sunday afternoon. Randy and I marvel at how popular we are when we're out with Max, even with complete strangers. It seems to go beyond just the usual cute baby reaction (to our objective parent eyes, of course). The other day, a woman in Target couldn't stop talking about how cute Max is. Randy and I each wondered whether she was going to follow us around the store (and not just down the one aisle).

With his need for entertainment, Max has actually been a good forcing function for getting us out and about, in a way that we didn't in our pre-Max 80-hr work weeks. His IV and food pumps are pretty easy to transport. For brief moments, we can almost forget how dependent he is on them and on his eventual transplant. There are unexpected reminders -- like when the woman in Target asks how much Max weighs, and I tell her in kilograms (which is how his weight was always recorded at the hospital, and continues to be during his regular checkups there). She looks at me blankly, and Randy translates into the more conversational pounds.

Mon Oct 30, 2006

Max brings home his first paycheck. (He didn't get paid for his modeling stint at 1 month.) It's $5, for about 10 minutes of work, as a research subject in my lab! After startling to the chorus of oohs and aahs that greet him, he settles down in my lap to watch a puppet show of sorts, designed to assess memory development. A team of research assistants orchestrates the show and measures how long Max spends watching different events.

We always emphasize to parents that we can't tell anything about individual infants with our studies -- the data are only meaningful in the averages. Randy and I scrutinize and overinterpret Max's data anyway. His behavior fits an emerging pattern: extreme attention to things that interest him, and extreme impatience with things that bore him. Randy sees himself in exactly this way. Randy's dad suggests it's not clear what other predispositions are possible. Like father, like son, like grandson.

Max ends his outing by meeting his great-grandmother Mautch (Nana's mom), and her visiting sister Bette. Bette is writing her memoirs, Mautch has written hers. So many stories to tell. So amazing to think about Max someday telling his.

Wed Nov 1, 2006

Those were Christmas stockings hanging from our mantel in earlier photos -- lovingly hand-stitched for each of us and delivered by baba in October, even though she'll be back in November and December, because you just never know. Celebrate early, celebrate often.

Or celebrate better late than never. Yesterday ended up being far too chaotic and cranky for all concerned to get into the Halloween spirit, starting with a bag change in the middle of the night that threw all our schedules out of sync. The high point of the day was a visit (with delicious curry) from grad student Erika Nyhus and Randy's postdoc Seth Herd, while Max was blissed out from nursing -- the eye of the storm. So today is the day we dress Max up in his pumpkin jumpsuit (another baba creation) and hat (knit by Nurse Barb from St. Joe's -- the one who confidently reassured us that we would become masters of Max's care, back when all we had even attempted were diaper changes). Our Halloween festivities include trips to Target and Whole Foods, and a visit from Great Aunts Carse and Paula, who understandably can't stop calling Max "pumpkin".

So it's Christmas early, Halloween late, and even with the occasional crankfest, Thanksgiving every day.

Sat-Sun Nov 4-5, 2006

It's baba's birthday weekend, when we should be celebrating having Max home for a month, and I want to bring better news. But we're back in the hospital.

When we first left Children's, Jason the GI doc warned us that we would need to check Max back in if he ever got a fever. And not back into the homey longer term care area with Max's old friends, but into an unfamiliar in-patient wing. Even if the cause were clearly identifiable, simple, and standard (like an ear infection), they would want to monitor him closely for a few days, given his risk of intestinal and line infections. I quickly said "Of course", but Jason cautioned that this would feel very difficult once we got him home. And it does.

Randy and I followed Max's temperature in Boulder, as it rose from slightly elevated (which could reflect teething or any of a number of other possible causes) to true fever on Saturday morning, and then brought him in immediately. It's been pretty much the usual protocol since: broad spectrum antibiotics are started, and will change to a more targeted dose as the results from his cultures come back. Preliminary results suggest another intestinal infection. Even though Max's risk is reduced by having most of his distal bowel removed, his condition still leaves him vulnerable to these infections. The docs indicate that they generally expect to see short gut kids back every couple months or so. A marathon, not a sprint.

It's physically and emotionally overwhelming to be back here at first. I watch the couple who checked into emergency after us, as they leave the hospital with their baby a few hours later, and I long to do the same. But we also see a mom who was here for many months with us, and apparently is still here. It's not so bad to be back for a short stay "at the Inn" (as one of the docs puts it) -- there's space for Randy and me to room-in, various uncertainties are getting resolved, and Max is being treated. He has some crankiness (at least in part from his sleep schedule getting disrupted by the transition) and he occasionally seems a little under the weather. Otherwise, he's perfectly happy to receive the steady stream of new folks commenting on his cuteness. He should be bored with just us back at home within a few days.

Mon Nov 6, 2006

The bad news is that Max is clearly cutting some teeth. They start him hollering at 5 am, and have him pretty fussy through late afternoon. "Real teeth?" baba asks, given that our sighting 2+ months ago turned out to be a false alarm. (We weren't crazy parents. Nurse Michelle was the lone skeptic -- everyone else thought they were teeth.) Yes, these are real teeth.

The good news is that Max's tooth pain is the only bad news. Everything else is just progressing along. His specific bacterial strain hasn't been identified yet, but his cultures from Sunday are negative thus far, indicating that the broad spectrum antibiotics may have done the job. He has no fever and looks great.

How quickly all this feels routine to us -- not the cause for despair that it seemed on Saturday. It helps that everyone here treats it as routine. It also helps to see GI Jason, who is Max's primary out-patient doc here. He's impressed with Max's growth ("He's a truck!"). And, NP Lizz comes to visit! It's her first day back at Children's, after her stint in Fort Collins. Randy and I practically jump for joy. Max coolly shows off his 2-finger suck.

Of course, what helps the most is that Max is doing so well. Just the teeth. They don't seem to respond to the usual treatments (cold rag, cold teether, vibrating teether, tylenol, oragel). He does calm almost instantly to leaving his room to stroll the halls, awkward as it is with a bulky beeping IV pole. Hospital room -- been there, done that. Same for the hospital crib, which he refuses to sleep in at night -- only his stroller will do. Now all three of us know the home sweet home that awaits us.

Tue Nov 7, 2006

Max starts making noise at 4:30 am, but today it's sweet singing and talking. He entertains himself for 15 minutes, then falls back asleep. We're all woken by the doc checking in at the relaxed hour of 8:00.

Max's bacterial strain has been identified: klebsiella. This is what he had last time. We all have this in our guts, but Max is just vulnerable to having it escape into his blood. There's no way to know whether this came from his proximal functioning intestine or from the distal. But we may change our treatment of the distal. We had been irrigating it once a day to clear it (a surprisingly manageable procedure), but Denver will now confer with Pittsburgh on whether we should cut back on this procedure, because of its potential strain on the distal intestine. In any case, Max's cultures from Sunday are still negative, so this infection is under control.

As Children's coordinates with Max's home care team for his discharge, I stop by the longer term care unit to make arrangements for donating my milk stores remaining there. (I'm continuing to nurse Max, and to pump for his continuous feeds plus plenty for storage for him.) I anticipate being very unpopular showing up without Max, but everyone is excited to hear about how well he's doing. Nurse Becky comes to visit him, and discovers that she went to school with Jenny, his nurse today and yesterday. There's a moment of tension when Jenny claims that Max is HER patient, but Becky quickly corrects her.

We get home to find gourmet dinners on our front porch (sent by colleagues Lori Markson and Fei Xu, with ice packs still cold) and a dinner in our fridge and cookies on our table (from Maria Kharitonova, my student who took care of our cats with last-minute notice). We start with the cookies, and then head out to vote! Thanks to Max, who prevented our usual voting early or by mail, we discover that our regular polling station is literally steps from our back yard -- and that waiting voters sure love doting on the cutest baby in the world.

We're grimy (that elusive shower thing), but so happy to be home.

Wed Nov 8, 2006

When cousin Toshio was a baby, my relatives in Japan found it odd that he slept in a separate room from his parents, while their dog, Pochi, slept with them. (They also found it odd that the dog was named Pochi -- a stereotypical Japanese dog name that no one actually uses, like Fido or Spot.) Now Randy and I are the odd ones, with Max sleeping in his room and the cats sleeping with us. (And with one of them oddly named Neko, or ``cat'' in Japanese.)

We've slept in the same room as Max only in hospitals -- at Good Sam (where he was born), Pittsburgh Children's (the night after his broviac replacement surgery), and Denver Children's (rooming in for one night in the longer term area just before taking him home, and in the in-patient wing the last few nights). At home, Max's baby monitor transmits his every sound, so it's almost as if we're in the room with him. Kind of like Fido and Cat are almost regular pet names.

Thu Nov 9, 2006

When we visited the local 17-year-old girl with Hirschsprungs, her mom said that having a daughter with this condition was both the best and the worst thing that ever happened to her. The worst for the obvious reasons. The best because it introduced her to such incredible people, and to an incredible side of people she already knew.

For dinner tonight, we feast on a delectable dinner of Sicilian chicken with currants and pine nuts and salad, prepared and brought by Jan Keenan and Dick Olson. Jan asks what else they can do. I can't think of anything they haven't already covered -- starting way back when with talking us through each of Max's diagnoses, to dinners and laundry while we were in our temporary apartment, through dinners and Max's milk storage and massage gift certificates and supportive emails across Max's time in the hospital, and now that we're home, dinners and babysitting offers. Not to mention showering Max with love as well as some of his favorite gifts. (Randy and I both feel a bit panicky if we realize we've left the house without Max's "nipple ball" from them.)

I suppose we've had a few other needs. But they were pretty well covered by the one-of-a-kind gift box from Eliana Colunga and family, sent to us in the NICU. It had every possible sort of treasure. Meatballs and chocolate. Where the Wild Things Are, and a stuffed animal of Max from that book. A book from Akira, whom Eliana ran into at the bookstore. Ginger lime body wash (very refreshing back in the day when we were still showering). Spinach salad (very tasty back in the day when these were still legal). A sound machine to help Max sleep, which has comforted him from the NICU to the longer term care area to Pittsburgh to home to the inpatient unit. Eliana's regular emails are like this treasure box -- each containing a much-appreciated wild assortment of medical brainstorming, practical information (where to eat around the hospital, what to do for a teething baby), charming stories about parenting, and reassurances about it all.

You'd think we'd feel pretty alone having a baby with a 1 in 5 million condition. But the perspective of friends like Marie Banich and Jen Saffran, from their own unique life experiences, has helped us to instead feel like we're now an intimate part of a much larger circle.

Not that we didn't suspect that our friends -- and our families, and the medical community, and even strangers -- were this amazing. But we have been overwhelmed with kindness.

In my worst moments, in the early days, I would have traded all of this for Max to be healthy -- for the world to be an uncaring place without medical hope, but for Max to be fine. I would give my life for him after all. His condition is the best and the worst thing that has happened to us. He is simply the best.

Sun Nov 12, 2006

Max is reliably using his first word. Randy and I have been vying for the honor, each of us enthusiastically talking about ourself with Max in the third person. ("Mama loves you Max. Yes, mama. Mama mama.") We also recently bought a baby signs book (that uses ASL), mainly because it seems like such fun, but also in hopes that this might help Max tell us, "Hey, I'm crying because my bag is leaking." just a little earlier than he might have otherwise.

His first word is in fact in sign. But "mama" and "dada" aren't even close. We should have known. I'm sure Max's nurses suspected. His first word: nystatin. This is the sweet medicine he takes throughout the day, and will continue to take for as long as he has his broviac. He signs for it by extending his sucking fingers (the index and middle fingers on his right hand) and bringing them to and from his mouth -- with a directed, pleading look in his eyes. The more desperate he is, the more frantic the hand motion. It looks like he's asking for a cigarette. He WANTS it. He NEEDS it. Which in truth, he does. Nystatin prevents thrush -- a yeast infection of the mouth -- an important precaution for kids with central lines. The excitement of starting to communicate with Max should help us get over the disappointment of being beaten out by a sugary syringe.

Fri Nov 17, 2006

We've been busy. A wonderful kind of busy.

Busy feeding Max his first solid food. We're starting with regular baby rice cereal with banana flakes, mixed with breast milk -- on advice from Max's GI team and with coaching from his OT (starting to collect photos of Max's home care team here). He loves it. Now when he stares at us during meals (which we all enjoy together), he looks more appreciative and less longing.

Busy sleeping, thanks to "Healthy Sleep Habits, Happy Child" -- recommended by Eliana. Who knew?: If you want your baby to sleep later in the the morning, put him to bed earlier in the evening. If you want him to sleep longer at night, try to get him to sleep more during the day. A good time for the first nap is 2 hours after waking in the morning. Now that we know this crazy stuff, Max is sometimes sleeping 10-12 hours straight through the night. And, we regret having ridiculed the Ken Normans and Liz Lemperts of the world, with their no-room-for-negotiation policies on their children's sleep schedules.

Busy training nanny Shannon! She has both nanny and EMT experience, which should help a lot in general, though the specifics differ. The family she nannied for during the last 5 years is a major property developer in Boulder. They had her buying cashmere sweaters for their toddler. We've purchased a grand total of 3.5 outfits for Max (thanks to box after box of hand-me-downs from cousin Toshio and from friends Ro and Bryan -- who have 2 sets of identical twin boys!, and with lots of couldn't-resist gift outfits). Shannon's EMT experience (in Crested Butte) was mainly about injured adventure-seekers. But she is quite comfortable with kids and medical stuff, and is quickly learning all things Max.

Busy feasting. Stuffed peppers with a creamy walnut sauce topped with pomegranate seeds. Spinach, leek, and Roquefort casserole. Vegetable beef barley soup. A fruity chicken dish, and homegrown chard and carrots. Chocolate chip banana bread. These are just the recent dropoffs. On top of this, baba is here all week. Great Aunt Jeanie actually planned her garden gifts around this visit, figuring (correctly) that Randy and I would have no idea what to do with chard. Baba lightly cooks it in a delicious miso sesame sauce.

Busy working. We're amazingly lucky to be able to do much of our work from home (or hospital), and to have labs that function almost discouragingly-well without us. But face time is really satisfying, and we each get in some good meetings this week -- some with Max in tow, some while baba roams the halls and campus with him.

We have not been busy giving Max his first haircut, but it's probably not far off.

Sun Nov 19, 2006

Wishes do come true. This is the message on a Christmas ornament I saw advertised recently -- "Wishes" on the outside, "do come true" when you open it up to see the inside. The old me might have pointed out to Randy how sappy this was. Now I contemplate buying one for him.

Max's numbers are improving: his bilirubin levels (a fairly direct measure of liver function), platelet counts (an indirect measure of liver function), and hematocrit (red blood cell count). We know these measures can oscillate, but hold out hope that our wishes -- for Max to remain relatively stable or improve until transplant -- just might come true.

Many of our other wishes have, as evidenced by gifts that first caused us some heartache, but which Max is now enjoying. Colorful lights from colleague Jon Cohen, which the hospital wouldn't permit us to hang, and which we didn't expect Max to see in his room until 9 days from today (the original estimate for when we might bring him home). Cute jumper outfits from colleague Alice Healy and family, which couldn't be maneuvered around all of Max's tubes when he was hooked up around the clock (with no break in sight), but which have been just perfect for his daily untethered outings. Bibs.

We hang Max's Beatrix Potter growth chart on the wall, in anticipation of when he will be measured in terms of height rather than length. Baba cross-stitched the intricate details of this chart, a labor of love begun in 1997 -- and completed in 2002. Talk about anticipation. And what that ornament says.

Mon Nov 20, 2006

We're still not quite ready for Max's first haircut, but we are ready for his first party! If you're reading this, you're invited (as long as you and yours are healthy). We'll be celebrating Max's 1/2 year birthday at our home in Boulder, on Saturday, December 2, 3:00-6:00 pm (hours that seemed so ridiculous when Ken and Liz used to beg us to move our parties earlier). Please mark your calendars -- in pencil, because you just never know. We'll update the blog with any changes. This party will also be a bit of a housewarming. We've decided to call our renovation done as of 3 days ago. Auntie Naoko encourages us to think of the parts that didn't get done as a different project. Absolutely no gifts -- we don't have room (or the organizational skills) for any more Max stuff. But tasty dishes and recipes to share for this potluck party will be more than welcome! We'll provide drinks, and of course, entertainment of the cutest variety.

Fri Nov 24, 2006

We enjoyed our annual deeply-delicious deep-fried turkey in Golden with Junko, Dave, and Toshio yesterday -- the first Thanksgiving when we think of them as aunt, uncle, and cousin.

Max has been celebrating Thanksgiving all week long with sweet potatoes, his second solid food: big open mouth to receive them, good movement of the food with his tongue (which OT Judy trains us to watch for), and smiles. Today he happily adds peas to his repertoire.

Sat Nov 25, 2006

Max gets his first haircut ever! And mama gets her first haircut in many moons, which we'll say qualifies as a shower. I manage 3 tentative snips of Max's hair across a squirmy span of 5 minutes. Randy grows impatient -- he has never understood what he calls the ``Munakautious'' nature. He grabs the shears and finishes the job in a matter of seconds. How can a haircut make Max cuter still? His cuteness was apparently a topic of discussion even among his surgeons in the OR. He is clearly far more than his condition (or his coif!).

Mon Nov 27, 2006

I give a talk about my research to our department. This is my first talk since Max (i.e., my first chance to work in a gratuitous photo of him). Jiji apparently uses us kids as examples in his computer science lectures. How mortifying. Granted, I do not use Max to illustrate how good scientists can be bad problem-solvers in their daily lives. Still, how exciting to think about Max someday being horribly embarrassed by all my attention.

Tue Nov 28, 2006

Max gets his 6-month vaccines plus a flu shot. His 2- and 4-month vaccines in the hospital were given Quentin-Tarantino-style: 3 nurses, each with a needle, lunging at him simultaneously. Today's 4 shots at the pediatrician's office come from one nurse in quick sequence. (Yep, Max has a regular good old pediatrician, Wendy Zerin -- who happens to be best friends with the in-laws of my postdoc mentor, Liz Spelke.) Max cries briefly after each shot, but is back to smiles within seconds after the final one. We're now guaranteed to be in town for the next 2 weeks, because transplants cannot be performed during this window following immunizations.

In celebration of Max's 1/2 birthday, we finally make his Whom does Max look most like? page!

Neither event is particularly celebratory from Max's perspective. Hopefully Saturday's party will be!

Fri Dec 1, 2006

Max's party is ON! We wonder whether he'll be inclined to show off his smiling, sitting, signing, sleeping, or stranger anxiety.

Sat Dec 2, 2006

Max is a party boy. He doesn't show off sleeping (and finds my attempts to sneak him off for a nap in the middle of his party quite unacceptable). He doesn't show off signing, but enjoys watching the grad students enthusiastically signing "Call me." and "I'm cold." and "Bear." (Our book of 60 signs only gets you so far.)

He does show off sharing -- all of his toys with the legions of kids that descend upon his play areas. Neighbor kids, colleagues' kids, landscape designer's kid, and the party-unto-themselves of Ro and Bryan's 2 sets of identical twin boys and NP Lizz's 5 kids (who all turn out to know each other, as students at the same bilingual school where Ro teaches). Word gets around that we had many of these shared toys before Max. So Randy does a good job sharing too.

People seem pretty evenly split on whether Max looks more like mama or dada. Each of the other contenders has support, but the late entry of Cartman has the most ardent fans.

Throughout the afternoon, Max shows off his impressive range of emotional states: smiles at being called "chubby cheeks," laughs at Lizz's trademark rambunctiousness, wonderment at everyone looking at him expectantly after singing Happy Birthday, the most endearingly-perfect level of stranger anxiety (occasional fussing, followed by quick calming in Mama's arms), curiosity about the sights and smells of the delicious potluck offerings, concentration while showing off his sitting, and distraught cries following Daddy's loud yells during foosball.

We get lots of compliments on the remodel. It is noted that the whole impetus for the project, a place to put Max's stroller, is in fact empty. Max's stroller is usually in our car or right inside our front door. Oh well. We're getting used to the idea that things can work out well even if they don't work out as planned.

Thu Dec 7, 2006

Max's liver numbers are holding steady to slightly improving. Because he has been doing well, our appointments at Children's were cut last month from weekly to biweekly, and today they get cut to monthly. Go Max!

His home care nurse still visits weekly (to draw labs), as do his PT and OT (to help him work muscles that didn't get worked during his hospital time). Max has had so many caregivers. When Randy and I finally brought him home from the hospital, I felt like we had won the grand prize -- out of all of these people looking after him, we're the ones who get to be his mom and dad. I talk with Max often about how lucky we are.

Thu Dec 14, 2006

We may move to Boston -- as early as next week -- for a month or two. The omega-3 based lipid treatment (which grad student Chris Chatham flagged for us back in July) is showing promising results for being less taxing on the liver than the standard omega-6 based treatment that Max is on (see recent Wall Street Journal article). Boston is the main center for this treatment. Denver is not comfortable starting it, but should be able to continue it after Boston starts it and Max shows liver improvement.

We've been coordinating with all of Max's medical teams (in Denver, Pittsburgh, and now Boston!) on these possibilities over the last couple days. Max continues to do well, but helping his liver could allow him to do even better. And it seems that he wants to retrace our footsteps: Boston is where Randy and I lived between Pittsburgh and Boulder. Now we are fantasizing about strolls along the Charles.

We have amazing support as usual, from our department (we'll continue to work remotely) and from friends in Boston. An exchange of apartment keys is currently taking place in Italy, which will ultimately lead to a delivery to us when we arrive at Children's Boston, and a place to stay while the hospital coordinates housing options for us. We continue to appreciate how the worst thing can bring out the best.

Fri Dec 15, 2006

Up until now, our insurance company has been wonderful about covering Max's needs. But today they refuse to cover his hospital expenses in Boston, because Omegaven (the omega-3 based lipid) is too new. The Omegaven itself is actually covered by Children's Boston, but not the associated costs of Max's hospital stay, lab tests, and follow-up visits. We file an expedited appeal, based on conversations with Dr. Mark Puder (the remarkably-accessible surgeon spearheading the Omegaven effort). The appeal points out that: We should hear back on Monday.

Mon Dec 18, 2006

We hope no news is good news. At least people are talking. We hear from GI Jason that a Denver insurance rep is talking with Mark Puder in Boston. Max's home care nurse, Cheryl, says this is key to getting approvals.

Tue Dec 19, 2006

The news is not good. Our insurance company denies our appeal, arguing (again) that Omegaven is too new. They will not cover any costs associated with experimental treatments, even if Children's Boston covers the treatment itself. They do not care what all other insurance companies are covering, and what all other patients are receiving.

Meanwhile, Max's recent liver scores (received last Friday and today) are worse. We will go to Boston so that he can receive Omegaven, while we appeal the insurance company's decision (we have 2 official levels of appeal left) and look into other ways to make this work. Our current plan is to arrive in Boston Christmas day.

Thu Dec 21, 2006

We're snowed in! Max enjoys watching the 2+ feet of snow coming down, warming his toes by his first fire, and taking a tour of the neighborhood snowmen. We're grateful that we stocked our fridge (and received a shipment of croissants from colleague Nora Newcombe, and chocolates from Ken and Anna!) just before the storm.

Mail delivery is canceled, so we haven't received our insurance denial letter. We need this before we can go to the next level of appeal, but we may wait until Max shows improvements on Omegaven, since this would make the strongest case (and insurance can cover his costs after the fact).

Denver International Airport is closed through tomorrow. This means that our friend Michael Frank will be standing in for Auntie Naoko and Uncle Mike; they can't arrive and he can't leave, at least until Christmas. Our flight to Boston will be crowded, but hopefully still on. We learn that upon our arrival, we'll have a room right by the hospital, at the Devon Nicole house for patients and families, complete with Christmas dinner and a present for Max.

Fri Dec 22, 2006

As if Max's story needs more of a Hollywood-style villain.

We learn from our insurance company this afternoon that if we go to Boston, they will refuse to continue covering Max's standard home health care (TPN nutrition and g-tube feeds, which are completely separate from the lipids) -- the exact services they would have provided in Denver, through the same service provider, at the same cost. We had been told by half a dozen people that these services would definitely be covered, so we are stunned by this outcome (as are all the doctors, who had argued in our favor). These services would cost us $170/day out of pocket.

We file an expedited appeal, indicating that we understand that our insurance company cannot officially support Omegaven because it is too new, but we are asking only for continuation of his standard home health care. We understand that according to our benefit rules, home health care coverage is provided only within the service area. Presumably this is to control costs and ensure that the insurance company can provide proper oversight of the service provider. In this case, the service provider is Coram, which has a branch in the Boston area with the same rates, service, and centralized billing system as the Denver office. They can even continue to bill through the Denver office if necessary.

We explain how much better short gut kids are doing on Omegaven at Boston Children's, compared to how they have done everywhere else on the standard omega-6 based lipid. We indicate how grateful we are, beyond words, for all that the insurance company has already invested in Max's healthcare. We ask that they continue to provide his current home health care, in Boston, so that he can be treated with Omegaven, in an effort to save his liver and his life.

Our appeal is denied this evening. The insurance company simply reiterates their policy of not covering home health care outside our service area, without addressing any of the points of our appeal. We are brainstorming possibilities with Max's doctors. And we have the two official levels of appeal left for this denial too. We may still go to Boston on Christmas day, and hope for a Hollywood-style ending.

Sat Dec 23, 2006

Deep breaths. Great Aunt Carse often reminds us to take these. It feels good every time.

We won't go to Boston on Christmas. We'll continue our conversations with our insurance company, in hopes that someone will look at the specifics of Max's case and agree that he can continue to receive his home health care in Boston. Everyone involved in Max's care is unanimous in the belief that this should happen. We hope that this support will allow us to be in Boston early in the new year.

In the meantime, Max will be home with family for his first Christmas! He may show off his "ba"s for baba. He'll avoid the backlog of passengers still stranded at DIA. He'll receive his flu and booster shots next week and be more protected for travel. He'll go to his regular checkup at Children's. At that time, he may get taken off his lipids to rest his liver, while we await approval of the longer-term solution.

Sun Dec 24 - Wed Dec 27, 2006

Sometimes the most wonderful moments are also the most difficult. Like each evening, when Max and I bliss out during nursing. I savor this time and recognize how lucky we are to be doing this at all. But these are also the moments when I find myself regressing from acceptance of Max's condition, and wishing everything could be just fine. Wishing that we could do this whenever we wanted, with no worries about how long Max was going or how much he was getting. Wishing that Randy did not have to spend this time setting up Max's pumps day after day. Wishing that as Max was waiting for the surgeon on his third day of life, he had suddenly pooped and we had simply taken him home. (This is what happened to another baby, born a couple months after Max. I think about this family often in these moments. We don't know each other, but they think of Max too, and our not-quite parallel lives.)

Our holidays have been wonderful. We're home. Christmas celebrations and feasts are brought to us (allowing us to uphold our Norman-Lempert-worthy protection of Max's sleep schedule!) -- with my immediate family on Christmas eve and with Randy's extended family on Christmas day. Auntie Naoko and Uncle Mike arrive in the wee hours of the morning the day after Christmas, delayed 5 days by the blizzard. Max is happy in everyone's arms. In many ways, we couldn't ask for more for his first Christmas. But it's hard not to wish.

We learn at Max's checkup at Children's that his liver numbers (which had worsened recently) are stable. We had hoped they would improve, and that the recent scores were just a blip from increasing his untethered time to 6 hours and increasing the concentration of his TPN/lipids in the remaining tethered time. (He is now back on the 4-hr untethered schedule.) GI Jason and NP Lizz reassure us that these numbers are ok. Kids can have much worse scores. Still, Max's lipids are cut from a daily dose down to three days a week. This will likely hinder his growth, which had already slowed on the daily dose, but will hopefully help to rest his liver. We continue to pursue longer-term (Omegaven) solutions, though we expect no real updates until after the holidays.

Thu Dec 28, 2006

Max's 7-month birthday brings his second snowstorm and his second flu shot. The shot is over so quickly that Max seems distinctly unsure whether it's worth crying about. He opts for one brief "waah." The storm is prolonged, which happily leads Naoko and Mike to be snowed in with us.

Mon Jan 1, 2007

Max rings in the new year with taiko drumming, happened upon by jiji and baba on the Pearl Street Mall. Max lets it be known that he prefers his drums from a distance. We toast to 2007, wondering whether it will bring Omegaven, transplant, health, and happiness.

Sun Jan 7, 2007

Our plan was to go sledding this afternoon. I think Max would have loved it.

We check into the hospital instead. Max's weekly blood work last Tuesday looked fine. But his temperature was slightly elevated off and on over the next 3 days. So labs were drawn again yesterday; this morning, we learn the culture has tested positive for some kind of infection.

So we quickly pack up for another "stay at the inn," bringing the usual comforts for Max (nystatin, nipple ball, sound machine) and a hearty vegan noodle soup and muffins (dropped off yesterday by postdocs Nicole Speer and Jeremy Reynolds) for us. It's almost like packing for a picnic. It helps that Max seems to be feeling fine. While we pack, he discovers the joy of peek-a-boo on his terms, as he repeatedly hides and reveals his face behind a quilt from Auntie Junko. We hope this call turns out to be a false alarm.

In the ER, new labs are drawn and broad spectrum antibiotics are started. While we're waiting for our room in the inpatient area, we learn that the labs show dramatic increases (worsening) in Max's bilirubin levels. We're stunned. This doesn't feel like a picnic anymore.

We learn that bilirubin levels can reflect liver status, but they can also transiently increase with infections. Now we hope that this is not a false alarm. An infection that can be treated (hopefully bringing Max's bilirubin levels down toward his usual range, and indicating relative stability in his liver measures) would be better than no infection to explain these high levels.

Mon Jan 8, 2007

Max's culture from his ER blood test is positive, confirming that he has an infection. The relief this news brings says a lot about the world we're living in. The infection appears to be in Max's central IV line. This is the first infection he has had like this, but it is routine for the staff here, is expected periodically for kids with central lines, and should be treated by one of the antibiotics started yesterday. The other antibiotic is stopped.

Thu Jan 11, 2007

We all have klebsiella living in our guts and staph living on our skin. Max is just more vulnerable to these bacteria -- to klebsiella due to the lack of motility in his nonfunctioning intestine, and to staph due to the daily accessing of the broviac going directly into his bloodstream. Klebsiella was probably the culprit in all of his prior infections, though it was only identifiable in the two infections that entered his blood.

This is Max's first staph infection. An infectious disease doctor tells us that there's good news and bad news about staph. We're experiencing both. The bad news is that it can take a while to treat. Max's cultures have continued to test positive each day we've been here. A second antibiotic is started tonight; this one should be better at cutting through biofilm that can build up inside the broviac. The good news is that staph is not particularly virulent. This explains why Max had only slightly elevated temperatures, and why he seems to have no idea whatsoever that he's sick. He has been busy grabbing stethoscopes and ID badges hanging around the necks of his new nurses in the inpatient wing, and marveling at being the center of attention and affection from old friends in the longer term care area.

In other good news, Max's bilirubin levels have come down, halfway toward his most recent stable levels. We're hopeful that these will continue to drop as his infection is treated. It's even possible that this infection was the cause of his bilirubin increases starting almost a month ago. If all of those increases were transient, that would be very good news for his liver.

Sat Jan 13, 2007

In hindsight, it's easy to wish Max hadn't been given that second antibiotic. But we're doing the best we can with the information we have.

The second dose of the antibiotic clogged Max's broviac yesterday morning. A nurse tried to clear the line chemically, but couldn't. Physical pressure is not tried, out of fear that it would send clot particles into Max's bloodstream or shatter the broviac catheter. He needs a new broviac (this is the main source of his nutrition and fluids), but we need to wait until his infection is definitively cleared. Max's cultures have all been negative for staph ever since the blood draw just before the second antibiotic was started. That one tested positive for another bacteria, but this is viewed as a false alarm, since that bacteria hasn't shown up before or since, and it would have been killed off by the antibiotic Max has been on from the start. The surgery to put in the new broviac is tentatively scheduled for Monday.

In the meantime, Max gets a peripheral IV put in Friday afternoon, so that he can receive fluids and some nutrition (though not as much as the broviac allows). He gets additional tests that rule out bacterial clusters at the broviac tip or around his heart valves. We learn late in the process that these precautionary tests are almost always negative, as they turn out to be in Max's case.

He is scheduled for surgery to remove the clogged broviac Friday at 10pm. My traditional pre-op fretting and meltdown are prevented by the sudden announcement at 7pm that the surgeons are ready for him early. A first! I know it doesn't matter whether or not Max is crying when I hand him over for surgery. But it helps so much that he is in fact happy, and immediately turns his attention to the task of getting the anesthesiologist's ID badge into his mouth. Just like it helps that a GI doc assessing Max for the first time comments on how playful he is. That the post-op nurse notes how much he's just a regular 7-month old -- grabby, attentive, talkative, smiley. He's happy in our arms after the simple 10-minute surgery, and sleeps soundly through the night.

Tue Jan 16, 2007

We're discharged from the hospital today, after Max's smooth surgery last night for his new broviac. We leave for Boston first thing tomorrow.

Wed Jan 17, 2007

Max's second flying experience is very different from his first. This time, it's the comforts of home in Boulder that we're leaving, rather than Max's early home of the longer term care unit at Denver Children's. No strangers in jumpsuits are involved. Great Aunt Carse shows up at 6 AM, with welcome calmness and breakfast and her van that fits our 5 suitcases and stroller. We're in Economy Plus on United, not on our own Learjet. When we land in Boston, we take a cab to our hotel, instead of an ambulance to the hospital. Granted, due to Max's infection and surgery, we've been home from the hospital for less than 24 hours. And it will be less than 24 hours before we check into the hospital here. But it makes a big difference. We feel like a family on an adventure, rather than a transported patient who happens to be accompanied by his parents.

It's well worth the hassle. Airport security in Denver spends 15 minutes checking out Max's meds, fluids, and equipment. In the boarding area, Randy administers antibiotics through Max's new broviac while I pump my milk, both somewhat discretely. Max's TPN pump beeps in the middle of the flight to signal completion, and Randy disconnects him. For his part, Max fulfills our wildest flying baby dreams. He wakes just before we leave the house, hangs out alert and happy from then until we get to our gate, naps briefly, eats during takeoff, naps for the first half of the flight and plays for the second half, with only a short cry during descent. He greets the commotion of Boston with wide eyes.

We learn that the 34 kids on Omegaven here are doing unbelievably well, with bilirubins down to normal levels within a couple months of starting treatment (after a transient increase, which we're warned to expect). Only one child has not been treatable. He was sent from Pittsburgh where he was awaiting transplant, but it was too late for him (and his liver) to benefit from Omegaven. The doctors do not think it is too late for Max. They tell us to take photos of him now, to document him at his most jaundiced. They expect that with enough time on Omegaven, allowing enough time for the gut to adapt, these kids can get off of TPN nutrition entirely and be removed from transplant lists. This happened for a boy with less than half the length of intestine that Max has. Randy is elated.

I am surprised to find that I feel afraid -- afraid to let myself hope that something this amazing could happen for Max. I realize that I am not as strong as I'd like to think. A physical exam yesterday also reminded me of this fact. I somehow weigh less than 100 pounds, which hasn't been true since at least high school. Max and I will put on some healthy pounds together in Boston.

Thu Jan 18, 2007

Many activities build toward a climactic "non-event" at day's end.

We check into room 809 at Children's. Randy points out his college dorm in the distance. Max gets labs drawn to document his starting state. He gets an x-ray to check his broviac placement. We demonstrate for a new set of nurses how protective we are of Max's napping. We meet the resident skeptic of Omegaven, and hear his cautions that Omegaven hasn't been tested in randomized double-blind studies, and the massively improved scores observed are only indirect measures of liver function. As academics, Randy and I understand these "ivory tower" arguments. But we'll take the treatment that is letting kids thrive over the one that is letting them die. (The latter -- the standard treatment -- apparently was not tested in randomized double-blind studies either, so it's hardly the gold standard.) We talk with a transplant doc, who mentions that successful large intestine transplants are being done in Paris. Max could look into this down the road, to allow him to get rid of the stoma from his small intestine, and to continue his tradition of touring interesting cities through his medical needs.

Max's lab results are a mixed bag. The good news: his direct bilirubin is down to his pre-infection stable level. His liver is making protein very well. What we'll count as good news: His triglycerides have been very high despite cutting back his lipids, possibly due to his infection; they are still high but decreasing. His liver enzymes have also been high, possibly due to the second antibiotic given for his infection; they are also still high but decreasing. The bad news: His platelet count is low. This is the measure that jumped around a lot in Denver, and is sensitive to how long the blood sample sits around. A low count can indicate severe liver injury, but can also result from infection. His hematocrit is also low, despite a blood transfusion just before his recent infection. We'll go in Monday for a new set of labs, and weekly thereafter.

At 8pm, Max's first bottle of milky white Omegaven is hung from his IV pole. The tubing gets threaded through a pump on the pole and then attached to his broviac. Max is sitting on Randy's lap. I am taking pictures. The nurse turns on the pump, and unclamps the broviac. That's it. It is a climactic but decidedly uninteresting moment -- a ``non-event'' as Kathy Gura, the Omegaven pharmacist, puts it. Just as it should be. Omegaven gradually flows through the broviac toward Max's heart. And we hope.

Fri Jan 19, 2007

On one of our Caribbean sailing trips, Tom Finholdt relayed a conversation between two college kids that he had overheard on his flight there. One guy claimed that a million dollars to him was like one dollar to Bill Gates. The other guy protested that it was the exact opposite: One dollar to him was like a million dollars to Bill Gates. Much debate ensued, but they were unable to reach consensus -- to realize that they were both right.

Max and Randy and I move into a sunny apartment in Jamaica Plain this afternoon. The owner is a generous hospital benefactor, so we are able to live here for free. It's just 10 minutes from Children's, and it's right above a bakery and next to a market. It's home.

Our finances will work out somehow. Children's Boston will cover Max's Omegaven while we are here. His TPN is being covered by our insurance company, as a result of clarification that it is required medication for him, separable from home health care. The remaining costs (primarily hospital stay and weekly labs) should be manageable. We hope that all of this will translate into less worry about finances, and more enjoyment of Max getting better.

Sun Jan 21, 2007

Christian, the boy it was too late for Omegaven to cure, is 19 months old and doing fine. We're now living with him and his family in the apartment. He received a small intestine and liver transplant at Children's Boston one month ago, when his family received the CALL just 4 hours after joining the transplant list. 4 hours! After waiting on Pittsburgh's list for over a year, and through 2 calls that didn't pan out in the end (one due to a snowstorm, one due to another recipient getting higher priority). Christian was discharged today -- in record short time. His parents credit Omegaven, which dramatically improved his health prior to transplant, even if it couldn't get rid of the need for one. They clear out his refrigerator drawer of IV medications, and fill it with gourmet cheeses and meats.

Mon Jan 22, 2007

We're settling into our Boston rhythms. We've got our neighborhood JP Licks for ice cream, and CVS for tissues sold in Patriots boxes (on sale after their loss yesterday). Randy walks around talking like Tom and Ray Magliozzi of Car Talk, or "Kah Tohk." The bus between our apartment and Children's is easy and quick. When its engine rumbles outside our family room, Max stops whatever he's doing and looks at me with his head cocked and one eyebrow raised. I explain that it's the bus. It reminds me of explaining pigeons to our cats when we moved here 10 years ago.

Today's lab draws are limited to a few things. Max's triglycerides have increased slightly, which is not great, but is reasonable in the context of starting up on lipids again after a hiatus. These should ultimately decrease. Max's hematocrit is gradually coming up. His cheeks are rosy this morning for the first time we can remember, aside from after blood transfusions or snow-shoveling with Dad.

Tue Jan 23, 2007

Thanks, Oprah. This afternoon, we meet Diane, the surprisingly young (not that much older than us) owner of our apartment. She describes how she was inspired to donate it to hospital families after hearing stories of amazing generosity on Oprah.

The physical space and location can't be beat. At least as important is how the apartment has brought us together with Christian's family. We can't believe all they've been through. In many of our conversations about his journey, all I can do is shake my head and fight back tears, even as Christian is beaming at everyone from his mom's arms. I catch my first glimpse of how people feel when talking with us about Max.

Wed Jan 24, 2007

Max likes public transportation. The soothing vibration of buses and trains, their interesting roars and whines, and above all, the endless stream of people. There is almost always some enthusiastic new face to entertain him. Not today. On the bus to the hospital, Max's only prospect is a surly-looking punk in implausibly baggy jeans. Max fixates him and tries repeatedly to engage him in conversation. He shows such seriousness of purpose in his efforts that I almost feel guilty not letting him know about the floppy velour snowman on his hat. It's like not telling someone making a serious scientific argument about the wad of spinach stuck in their teeth.

Max's scores from today's blood draws are ok. Most of them show the slight worsenings that are expected when starting on Omegaven. One surprise is that his direct bilirubin is slightly better; Dr. Puder expects this measure to worsen before it shows dramatic improvements in Max. For consistency's sake, I feel like I should worry about either the measures that are getting worse (even though this is expected) or the measures that are getting better (because this is unexpected). Not both.

Max's hematocrit continues to climb. We have never seen this kind of improvement before. Christian stopped needing blood transfusions once he started on Omegaven. Before Max was born, Randy and I had every intention of being mellow parents -- not worrying about exactly when Max started walking or talking and definitely not making comparisons to his friends. But not needing any more blood transfusions! It's hard not to encourage Max to try to be like Christian in this regard.

Another surprise is that before Max started on Omegaven, he had the highest ratio of omega 6s to omega 3s of any kid treated with Omegaven here thus far. This feels like a slap in the face, after all the flax oil massages and attempts to boost my dietary omega 3s (despite being told that Max likely didn't have the gut to ingest them from my milk. This is not what Dr. Puder believes.). Well, Max is mainlining omega 3s now.

Max is fussy on the crowded bus ride home, following a brisk walk through our old Beacon Hill haunts. Giving him an occasional nystatin hit isn't cutting it, so we go to our last resort of just handing him the syringe. He immediately relaxes into his you-may-go-now, I-have-everything-I-need look. Randy doesn't like displaying this clearly medical device for others to scrutinize and judge, but we do what we need to do. Suddenly the woman next to me is elbowing my side and the woman across the way is pointing urgently at Max. He is still perfectly content, but in his stupor has dropped the syringe from his mouth onto his jacket. Everyone breathes easy as I return it to its rightful place. I like public transportation too.

Thu Jan 25, 2007

Max is starting to indulge his Boston fans. Just before we left Children's Boston, Rachel Tunick stopped by. She's a staff psychologist who gets called in to deal with difficult parents. That didn't have anything to do with her visit, as far as we know. Rachel was a graduate student and avid roller hockey player on my lab team when we were at DU together, and has been a great resource for us here. Rachel notes that Max is even cuter in person. We wonder what they'll do for the (hypothetical) movie about Dr. Puder and Omegaven, when they can't find a baby cute enough to play Max.

Tonight, Randy and I take Max out for dinner with colleague Lori Markson, who is on on sabbatical here from Berkeley. Max shows off how well he can nap and allow us to eat out, at least if we shovel our food in and limit conversation. Lori notes that Max looks more like Randy in person.

Looking cuter and looking more like Randy go hand in hand. Someone pointed out this link in the context of what happened as Max got older too. Oh yes, I believe it was Randy.

Sat Jan 27, 2007

Giving has never felt so good. We've been on the receiving end all this time: for meals, housing, emotional support, even an offer from a stranger for a live liver donation (which we declined -- if Max does end up getting a small intestine transplant, which cannot come from a live donor, he would receive a liver from the same donor if he needed one). Our interactions have been so one-sided for so long that I found myself forgetting to ask parents we talked with at Children's Boston about how their kids were doing.

We're finally in a position to give. Being in Boston has put us in touch with a network of families dealing with similar issues, and we're sharing from our experiences. Randy and I seem to be the resident record-holders for getting ostomy bags to last -- thanks to Nurse Michelle back in Denver (the mere existence of someone known as the "stoma queen" went a long way toward making us feel like we could master this system), and to Nurse Patti in Pittsburgh, and perhaps in no small part to our competitive innovations in seeing who could get a bag to last the longest. These bag changes might seem trivial in the grand scheme of things. They are part of routine care, and have nothing to do with long term outlook. But they shape how you feel about yourself as a parent. When Max stopped breathing after surgery 4 months ago, I was terrified he wouldn't make it. When we struggled through 3 bag changes in one day a few weeks before then, I was terrified that I wouldn't make it, that I couldn't be the parent Max needed for his cares. It used to take Randy and me plus at least one other person 45 minutes to do one of these changes, and we'd be lucky if the bag lasted a day. It was demoralizing. Now Randy can do it on his own in 10 minutes, and the bag will last almost a week.

Yesterday afternoon, Randy changed Christian's bag and taught his mom, Colleen, our system. This morning, Colleen tells her mom how liberated she feels by this help and knowledge, how ready for the day's activities and unburdened from worries about Christian's bag. Then it leaks. I jump in to do the next change, confident I can beat Randy's wimpy entry of a less than 24 hr bag. It takes a village to change an ostomy bag.

More generally, we want to share what we and other parents now know from our often-grueling experiences -- all the stuff we wish we had heard along the way -- in hopes of easing the experiences of other families. Randy has started a short gut wiki to consolidate this information (from any parents who want to contribute) in one place.

After the bag changes, Christian's family goes to IKEA and surprises us with a crib for Max. Giving seems like an indulgence we have all been denied since our babies were born. Now we're luxuriating in it.

Sun Jan 28, 2007

Boston offers so many ways to celebrate Max's 8-month birthday. He makes his selection using his well-traveled sound machine. It has been set to the Babbling Brook option since our NICU days, but this morning Max switches it to Sea Waves. So we head for the wharf, taking advantage of the relatively balmy 30 degree day to walk from Back Bay, across the Public Garden (where Randy tries to take Max in his stroller out onto the frozen swan boat lake, but I intervene, Munakautiously) and across Boston Common, through Faneuil Hall, and finally out to show Max his first view of the ocean.

Next time, Max will probably look for a Train Station setting on his sound machine -- that would be a much more worthy destination than just a bunch of water. Eliana had prepared us for this. When her son first saw the ocean at 3 years of age, he ran excitedly toward the water. He had spotted a spider web. He spent the rest of the day looking for spider webs along the shore, unswayed by his parents' fascination with waves, boats, and sea lions.

We can't predict how Max will react to his condition when he fully understands it. Or how anyone else will react. Bev Kormach, the transplant coordinator in Pittsburgh, once fielded questions at an elementary school attended by one of her patients, to help the girl's friends to understand her condition. Bev went in prepared to explain intestines and ostomies in ways that children could understand. But they were completely uninterested in the material she had prepared. All they wanted to know was why the girl was 9 years old while the rest of them were 8. (She had taken time off from school after her transplant.)

We hope that what's consuming us now will turn out to be just a backdrop for the really interesting stuff in Max's life.

Mon Jan 29, 2007

Max is a googlewhack! That is, his web page shows up as the single hit when you google two terms that appear in the dictionary: aganglionosis and snuggle. Max won't get the elusive google-sanctioned fame and glory, because the frames on his page make it look like there are actually 2 pages that contain these terms, and an old copy of the server for his page makes it look like there's a third. But we know there's only one. Aganglionosis and snuggle. Uniquely Max.

Tue Jan 30, 2007

Max gets his labs drawn a day early this week, since we're at the hospital today for his booster shot. His hematocrit continues to rise beautifully. His bilirubin and triglycerides are stable. Of the dozens of other measures that get tracked, some are better (e.g., C-reactive protein), some are worse (e.g., liver enzymes). The overall picture looks good to Dr. Puder, given the typical trajectory on Omegaven. And Max looks good to Randy and me. Not just in an of-course-he-does kind of way. He's still jaundiced -- enough so that a woman on the bus ride in gives him a gold angel pin for good luck. But he is rosier and happy.

Thu Feb 1, 2007

I understand the fierceness of mama bears.

Rachel Tunick comes by tonight to lend us a space heater. She is explaining to her husband that she somehow made Max cry when we ran into her at the hospital earlier this week. Max watches Rachel, and after what appears to be careful consideration, starts wailing. I try to explain that Rachel wasn't bragging. I hug Rachel to show Max that she's ok. He is unconvinced. I lay next to him, and talk soothingly. He quiets, but is still agitated. Finally I cradle him in my arms, shielding him with my body, and explain that Rachel won't hurt him, I won't let her. Max looks so comforted and content, gazing up at me like I've just plucked him from wolves (or whoever preys on baby bears) and brought him back to the safety of our den. I am amazed, again, by how I love him even more each day. How can I possibly love him any more tomorrow than I do today? Max eventually manages to look at our visitors without tears.

I wish protecting him could always be this easy.

Sun Feb 4, 2007

They say there's no such thing as bad weather, only bad clothing.

We've been hoping for warmer days for exploring Boston, but the forecast calls for only colder. It's not nearly as bad here as Boulder's recent minus 18 though, and Max needs some adventure. So we layer on half our wardrobes, over our pajamas, and head for the Charles. Max is cozy behind his spiffy all-weather stroller cover, a hand-me-down from Christian. After a good minute of reminiscing by the river, we opt to forego nostalgia in favor of getting the feeling back in our fingers and toes, in an unfamiliar bistro on Newbury Street. We savor the unexpectedly fresh offerings, the shelter, and the fact that bad weather (or clothing) is our main concern for the day.

Mon Feb 5, 2007

Okay, maybe we were a little cocky about our ostomy bag system -- saving the day, bestowing our knowledge, and all that. Max is putting us in our place. He has taken to reaching down, grasping his bag as if he has caught it trying to escape, and yanking it off in one fell swoop. When he wants to be more precise about things, he simply opens the small drain cap on the bag so that all the contents spill out. He manages to do this through his clothing, usually during the night, so that we wake up to a very big mess. And to Max appearing rather pleased with himself, looking up at us as if to say, ``Resident record-holders? I don't think so.''

Tue Feb 6, 2007

One of Christian's favorite animals from Dr. Seuss' ``Wet Pet, Dry Pet'' is the Yink. The Yink likes to drink pink ink. As you pull a tab at the bottom of the page, the Yink turns from yellow to pink as it drinks the ink. And in readings from Christian's dad, the Yink makes a slurping sound worthy of a Japanese noodle shop.

We love to kiss Max's toes as he giggles and squeals. Now we find ourselves checking their color. Colleen explained that jaundice goes away from the bottom up -- you see yellow turn to pink first in the toes, then up the legs, to the torso, with the face and eyes the last to return to their natural colors. Max will be just like the Yink, I think. Except that rather than drink pink ink, he mainlines fish oil. It does not stink. The bottle goes clink! We hope the tubing will not kink.

Wed Feb 7, 2007

Randy and I have a good laugh over Max's labs today. At least that's what it looks like over video-skype with baba and Auntie Naoko (who is visiting our parents in Cleveland). The conversation starts with quick catching up and joking around. When we move on to discussing Max's labs, it turns out that the video-feed of us is delayed by a couple minutes, so it looks like Randy and I are still laughing lightheartedly. (Earlier in the conversation, the video-delay apparently made it look like I could speak completely normally while stuffing my face with salad. Naoko and baba found this remarkable, but not odd enough to recognize the problem.)

In reality, Randy and I are not laughing about the labs, but we're not crying either. Like last week's labs, some measures look better (hematocrit and platelets continue to rise, triglycerides and one liver enzyme are coming down), and some measures look worse (one liver enzyme continues to rise, C-reactive protein is up slightly). Bilirubin is still stable, the overall picture still looks good to Dr. Puder, and we still need to remind ourselves that this process will take time.

The video-delay leads to many amusing moments in our conversation with Naoko and baba. No matter how much they come to expect the lag time, it's hard to get totally used to it. We know the feeling.

Thu Feb 8, 2007

Today Max meets his match. Well, the closest you can get to a match when you have a one in 5 million condition. Austin is just 5 days older than Max, and has just 5 cm more intestine. He may be almost as cute as Max. But Austin is pink -- a gorgeous, happy, healthy pink. He managed to escape liver problems for many months (which apparently happens for 20 percent of kids on TPN, for reasons that are unknown). Now some of his numbers are turning, so his family is visiting from Pittsburgh to consult about Omegaven.

We have been excitedly anticipating this meeting for weeks. But with the unpredictability of doctor and nap schedules, we end up with only 10 minutes to talk. It's just enough time to swap bag tricks and compare plumbing. And to connect in a way that only 2 in 10 million can.

Fri Feb 9, 2007

A while back, Tim Curran confessed that he and his wife Sheila felt intimidated selecting a gift for the baby of a developmental psychologist.

Max loves opening packages. We receive one every few days, to replenish his medical and regular-baby supplies. Max and I open one as part of this morning's fun. I am disappointed to see that it is just the crib sheets I ordered earlier this week. Ho hum. Then Max reminds me that fun is in the eye of the beholder. Sheets are perfect for full length peek-a-boo, for simultaneous reciprocal peek-a-boo (each with our own sheet), and for fanciful dancing. And lots of laughing. My stamina runs out before Max's captivation.

This reminds me of the gift box we gave cousin Toshio on his first birthday -- of carefully-selected, lovingly-wrapped items from around the house. Tupperware containers with film canisters inside. A magazine. A cardboard tube from a paper towel roll. Yep, I'm a developmental psychologist. Toshio loved it, impervious to the concerned glances passed among those who witnessed the giving.

And Max loves his Juniper Giraffe from Tim and Sheila. It is the jumbo Swiss army knife of toys, with something for everyone: crinkles, squeaks, rings, knobs, eyes, music, mirrors. It would have practically required its own seat on the plane though, so it awaits us back in Boulder. We have endless possibilities to explore in Boston until then.

Sat Feb 10, 2007

When our friend Earl was in college, he and his buddy Steve took a class with a woman who had a button on her backpack that said "I love men." ("Love" was actually a heart symbol.) They once spotted this woman from the balcony of a movie theater. They wanted to call out to her, but didn't know her name. So Steve cupped his hands, and yelled down at the crowd below, "I love men! Hey, I love men! I love men!" It eventually dawned on them what he was saying.

This afternoon, we take Max on a nostalgic trip, walking our old route from Beacon Hill, over the Charles, to MIT. Our reminiscences send Max into a deep slumber. We meet up with friends Earl and Marlene, tour the grand new neuroscience building (which Max decides is worth waking for), and share new stories and old favorites, like I-heart-men.

Randy often says to Max, "I love you, Daddy." It seems like this could be confusing, but it may be dawning on Max what Randy is trying to do with this repeated pronouncement. Today Max comes pretty close to saying it back, with a little help from his fingers as prosthetic lips/tongue.

Sun Feb 11, 2007

Last summer, Randy and I agonized over Max's infections and the decision of whether to remove his non-functioning intestine. We puzzled over why the journal articles on long-segment Hirschsprung's hadn't prepared us for this situation. Neonatologist Susan Niemeier responded with a line that has stuck with us: Research articles don't always capture the texture of the experience. We had in fact read papers describing groups of infants that did and did not have their colon resected. But none of these papers even hinted at the anguish associated with deciding which group to put your baby in.

Another thing that doesn't capture the texture of the experience: graphs. We've seen multiple Omegaven curves, where after a delay, liver scores get worse before they get better. (A parent recently posted one of these graphs to the short gut wiki that Randy started.) So we expect this worsening. We even want it, since it is part of getting better. But we're struggling with the texture of the experience. Max is starting to look worse. He has turned a little green, is developing scaly orange patches around his mouth, and is itching his nose to the point of bleeding and scabbing. This isn't in the graph. We hope it is in the plan.

Mon Feb 12, 2007

Max's feet are pink! Deliciously pink. There's a clear transition line along their sides where the color switches from yellow, as if he went to the spa and soaked his feet, in natural baby pink ink. Or as if Omegaven is doing its thing.

That's not all. His intestine seems to be waking up and absorbing more food. I can nurse him twice a day (instead of just once), and we increase his continuous feeds tonight. The scaly orange patches on his face turned forest green and flaked off. All just in time for a visit from Grandpa Dick.

Texture isn't all bad.

Tue Feb 13, 2007

Pink feet don't lie. We go to the hospital for Max's labs a day early, to avoid going out in tomorrow's nor'easter. Almost all of his numbers are improving -- good measures rising, bad measures falling. We hope the orange, green, and red, scaly, scabby weekend marks a turning point -- from what sounds like an grim Shel Silverstein tale toward the happily slurping Yink.

Wed Feb 14, 2007

"Your baby will make you feel a fascination like the world's greatest toy, combined with an infatuation like the greatest lover." This is how one of my colleagues tried to prepare us for the power of our emotional bond with Max. But nothing can really prepare you for how much you will love your baby. Not even already having a child. Another colleague cried all night just before delivering her second baby, apologizing to the imminent arrival for not possibly being able to love her as much as she loved her first child. (She retracted the apology as soon as she gave birth.)

Nothing could prepare us for Max, for the impact of the simple things he does.

He indicates when he's hungry, turning to me with his mouth as open as he can stretch it, occasionally glancing over at Randy like ``What are you still doing here?'' I can nurse him, providing what seems, in that moment, all that he could ever want. And I can give Randy that same look.

Max makes it up to Randy at other times by saying, ``I love you, Daddy.'' (which, to the untrained ear, might sound like ``Aylayuyaya.'')

He calms so quickly in my arms.

When we say ``Yay, Max!'' (which we do fairly often), he clasps his hands together and holds them up to one side of his face. He looks like he is giving a big hooray, acknowledging his fans as he rides in a parade.

He is getting better. I'm reminded of how we felt the night he was born, discovering a happiness we hadn't known possible.

Those colleagues don't seem nearly as nutty to us now.

Thu Feb 15, 2007

There are many things that I hope Max will learn or inherit from Randy. One of them has clearly been passed down from Grandpa Dick -- the ability to say that if it's not productive to worry about something, then don't. And really, they don't. It seems superhuman to me, like they should be wearing capes and tights with this kind of power.

I don't think Max got quite enough time with Grandpa to learn this ability during this visit. He did learn to say "I love you, Grandpa." (which, to the untrained ear, might sound like ``Aylayuyaya"). He mastered the process of opening gift bags, thanks to daily sessions with Grandpa. And he got to hear about sailing adventures and a supposedly fascinating DVD set about steam engines that will be ready for him when he can visit Grandpa in LA.

We don't actually know when we'll be able to fly with Max just for fun. But it's not productive to worry about it, so Randy and Grandpa won't.

Fri Feb 16, 2007

It turns out we've been dropping names all this time. Our housemate Christian is pretty much a rock star -- complete with crazed groupies, who are now emailing each other with messages titled "I know where Christian is" (after stumbling across Max's page), and trying to get to Christian through me. We should have known.

We're at it again. This afternoon, Christian and Max have a play date with Ellie, an Omegaven poster child with her own rock star following. She is a couple months older than Max and started on Omegaven before he was born. Her feeds are going up, her TPN is coming down, and she's a dynamo. Before her arrival, we debate who might be more likely to win her over, Christian (with the older man angle) or Max (with the great hair angle). In fact, both boys seem a bit overwhelmed by Ellie, with her exuberant squeals and self-assured romping. Everyone eventually gets comfortable -- Max enough so to try to negotiate toys from Christian and to pull on Ellie's tubing. The rest of us are just happy to be hanging out with the band.

Sat-Sun Feb 17-18, 2007

Max takes his gig on the road. Randy and I load up a rental car with his pumps, meds, and syringes, and head for the countryside of central Massachusetts. We spend the weekend with Liz Spelke (my postdoc mentor) and Elliott Blass (who happens to be Max's pediatrician's best friend's brother). Max is more impressed by the connection to Dr. Zerin, warming to Elliott immediately, with smiles and tugs of his glasses and face. Max might also appreciate Elliott for his seminal work on how sucrose relieves infant pain. Pass the nystatin! It takes a few rounds of singing by Liz -- of French pieces and verses that she composed for her children -- but Max eventually warms to her too. Max might also appreciate Liz for crediting babies with extensive innate knowledge, far more than ever seemed reasonable to us before Max came along.

We feel rejuvenated -- relaxing in a beautiful home in the woods with stunning views of the hills (which Liz and Elliott like to call mountains), and feasting on their delicious offerings. The whole weekend seems as surreal as the exquisite souffle Liz whips up after dinner one night. We dig in immediately, enjoying it while we can, with no time to stop for pictures.

Tue Feb 20, 2007

Max seems to be moulting. The process is slightly less dramatic than a snake slithering out of its skin. Max's transformation is limited to his face, where patches of skin continue to turn interesting colors and flake off. We haven't seen forest green again. The splotches are closer to a burnt sienna these days. Randy calls him "pizza face," in tribute to Anne Lamott's chronicles of her son's first year; her brother used this special term of endearment when her baby had very bad acne.

Through it all, Max manages to look better and better. He's that cute. And he truly looks healthier. We hope that his flaking really is like moulting -- a process of renewal.

Wed Feb 21, 2007

A neighbor yelled at Christian's mom last week -- something about our apartment using the wrong garbage can. Colleen explained that it was a simple misunderstanding and wouldn't happen again, but the neighbor wouldn't let it go. Colleen finally had to say, "Look, we have chronically ill kids up there." I was startled by this term, by the idea that Christian could be characterized as chronically ill. He comes across as perfectly healthy. It took another second for me to realize that Colleen was talking about Max too.

These kids just don't seem sick. Max, Christian, Ellie (who comes to the apartment for a second play date this afternoon), and Austin -- they're the strongest little people around, fighting a highly specialized fight. It feels more natural for Randy and me to think about Hirschsprung's as Max's condition, rather than his illness or disease. Children's Hospitals are much better named than Hospitals for Sick Kids.

I don't think we're in denial. We've just adapted to our situation, as everyone does. Sure, we're on pins and needles each week waiting to hear about Max's labs (which won't be drawn until tomorrow due to Presidents' Day). But it has become part of our routine. We don't think in terms of illness anymore.

This reminds me of the time an elementary school friend saw photos of my family, and commented that everyone was Japanese. I thought, how strange, they don't look Japanese to me -- they're just my mom and dad and sisters.

When cousin Toshio was learning his terms for family members, Randy and I would query him: Was he a son? A grandson? A nephew? He would play along for a while, but would usually end the game by declaring, "I'm just Toshio!"

Max is a cousin, a nephew, and a grandson. A long-segment Hirschsprung's baby, a transplant candidate, and Omegaven recipient #35. We can't help but see him as just Max.

Thu Feb 22, 2007

Max's lab results are good. We're disappointed, because we were expecting them to be great, based on how he looks. Crazy great, actually. When Randy tells Dr. Puder during the blood draw about our predictions, Dr. Puder informs him that such improvement would be unprecedented. It's easy to find yourself hoping for the unprecedented, though. We weren't the only Omegaven parents who thought that our baby just might be the first one to skip the transient worsening before improving.

All but one of Max's measures show continued improvement. We should spend more time enjoying the dozens of good numbers, like the gorgeous increase in his platelet count -- up 60+ percent. But we focus on the one measure, just like I focus on the one guy falling asleep during my talks: Max's direct bilirubin has increased slightly. This worsening is probably negligible, but in any case, the measure hasn't improved. And this is a measure that the team here really trusts. It's a little like Randy being that one dozing guy. Max's total bilirubin (direct + indirect) is dropping nicely. Our understanding is that this means his liver is doing its job in conjugating most of the bilirubin, chemically attaching it to a compound before excreting it in the bile. (The conjugated bilirubin is the direct bilirubin, unconjugated is indirect bilirubin.) As Max's liver continues to heal, the direct bilirubin should improve like the other measures.

Randy has actually fallen asleep during my talks. Everything worked out ok.

Sat Feb 24, 2007

After our disappointment over Max's good-but-not-great labs, we're trying not to get our hopes up for crazy great results next week. But really I am thinking what a fine surprise it will be when they turn out to be crazy great.

Sun Feb 25, 2007

I am not one to quote Nicole Kidman. But watching the Oscars tonight reminds me of something she said during the awards ceremony the year after 9/11, something I've thought of often with Max, about how it is important (rather than trivial) to celebrate the arts in times of turmoil.

Max has helped us to celebrate not only the big, obvious things -- like being alive and being consumed with love -- but also the things that might seem trivial in the midst of his turmoil. Like talking about ceiling repairs, as we do with friends Rachel and Peter over lunch today. (Their upstairs neighbor flooded his condo.) Or hashing through details of experiments and simulations with students, as we do in our weekly lab meetings (which we attend via video-skype) and through constant emails. And giggling with each other over nothing in particular. These things were unthinkable in the early days, when our only question was what it would take to save Max's life. Of course we're still focused on his life. But the turmoil of it has helped us to appreciate the texture of ordinary moments all the more.

Tue Feb 27, 2007

Max has a little scab on the tip of his nose, from scratching during a recent frenzy just before falling asleep. He looks like a Berenstain Bear.

Wed Feb 28, 2007

We can feel spring coming.

Max's lab results show steady improvement. And his direct bilirubin is now improving with the other measures. He is not yet on the dramatic part of the Omegaven curve. The fine surprise of crazy great labs may surprise us after all.

The days have been warm enough recently for us to spend time outside without contemplating the fastest route inside. This afternoon, we walk home from the hospital through the Emerald Necklace, a chain of almost contiguous parks that wind their way around Boston and surrounds. The sun is shining, the ice is melting -- the birds were probably singing. Max enjoys a few minutes of this bliss before settling into a well-deserved nap. He is 9 months old. It feels so good to be out here.

Thu Mar 1, 2007

Forty years ago today, two events transpired that would ultimately lead to Max. Randy entered the world, or more precisely, Nana's hospital room in Denver. As he emerged, jiji and baba were getting married halfway around the world, in Tokyo.

Thirty years later, Randy and I celebrated his birthday at Maison Robert, a Boston institution just a few years younger than us. (Yep, we're older than institutions.) Our plan for a return birthday visit today is thwarted by the restaurant no longer existing. So we head for Chinatown instead, to satisfy a longstanding dim sum craving. Max discovers the art of throwing chopsticks on the floor. He is so intent with his actions, like he knows that if he doesn't get the chopsticks on the floor where they belong, no one will.

After wandering around South Boston, we return to the apartment for a series of routine (but unanticipated) cares for Max. The bakery downstairs closes before we finish, so we end up with no birthday cupcakes. Perhaps this is for the best, given our extensive cupcake testing in anticipation of the big day.

Forty years is a long time. Plenty of time for medical advances that have allowed Max to live and to thrive. Plenty of time for the next round of developments that we can't even begin to imagine. Plenty of time for Max to start outliving institutions too.

Sun Mar 4, 2007

Imitation may be the sincerest form of flattery, but perhaps also the most difficult. On one of our Caribbean sailing trips, we tried to create our own "Jack Handey's" -- from the deep thoughts segment on Saturday Night Live:

(This is what happens when 8 people cohabitate on a small boat for 10 days.) The formula seemed easy enough to imitate, but our attempts -- one of which is included above -- could always be picked out from the real thing.

The formula for great children's books also seems easy enough to imitate -- rhymes, whimsey, and a hippo or two. But a recent on-line purchase of 50-percent-off books (What could go wrong?) revealed that children's books can go wrong, at least for parents. A game of hot potato does not make a great plotline, and books that need to double as clothing hangers signal a problem.

Each morning, I present Max with 2 books to choose from. His earliest "choices," many months ago, were really just random arm flailings. They quickly transitioned into clear selections that revealed reliable preferences -- for whichever book was not read more recently, and for any book that went up against Hippos Go Berserk. He does not discriminate against the 50-percent-off books.

Yesterday morning though, for the first time, Max refused to pick a book. He looked at the 2 selections I was holding out to him and practically rolled his eyes, like "Not these again, Mom." This morning, I dig up a new book option, and Max lunges at it excitedly, joyfully, and a bit desperately -- a combination I've also seen when nursing him.

An apartment in Jamaica Plain can't quite imitate home in Boulder, where Max's Dr. Seuss and Sandra Boyton collections await our return. It shouldn't be much longer.

Mon Mar 5, 2007

Forget Akira, Rachel, and Liz. Ken Koedinger is the scariest of them all. He is visiting from Pittsburgh, where he last saw Max during our transplant consult. Then, Max was not yet 3 months old and not terribly picky. When Ken shows up at our apartment tonight, Max immediately makes clear that has developed preferences over the last 6 months, and Ken is not among them.

Max is unswayed by Ken's offerings of a cute grasshopper shirt and sporty jacket. (He probably suspects that these gifts are more Anna's doing.) He calms only briefly in my arms. He is not reassured in the least by Ken moving out of view; Max cranes his neck to confirm that Ken is still there, and leaves no doubt that this is unacceptable. We decide that the problem is Ken's hair, which is far more styled than anything Max has witnessed on Randy or me. So Ken tousles his 'do. This turns out to be the most effective trick, but it quiets Max for only a few seconds. He knows it is still Ken after all. Max relaxes only when we put him into his crib for the night, with promises that Kenny isn't nearly as scary in the light of day.

Tue Mar 6, 2007

Our return flight to Boulder was scheduled for this afternoon, but we are not on it. We are not returning to our kitties, or to Max's library and Juniper Giraffe. To our next installment of gift croissants (which I am oddly fixated on). To the drawers full of cute outfits that Max is outgrowing, as he transitions from precious baby to willful boy. To our graduate seminar, which starts this week. We need to remain in Boston until the insurance issues around going home on Omegaven can get sorted out. So we buy another round of staples -- things we thought we'd need only one of here -- a second jar of mayonnaise, a second mini-shampoo, a second jug of laundry detergent. We prepare to teach our course via video-skype. And we wait.

Wed Mar 7, 2007

I feel giddy with hope.

A couple in New Jersey with a 6-week-old boy was recently told by doctors and counselors to prepare for the worst. Their baby has Hirschsprung's and rapidly progressing liver damage. The doctors said that only a miracle could save him, and they had no reason for hope. The doctors did not know about Omegaven. The parents found Max's page, and the family is now on their way to Boston.

I feel overwhelmed by the possibility of this baby's life being saved. The thought makes me want to jump and dance and sing and cry. I don't know how Mark Puder and Kathy Gura keep it together, saving baby after baby, day after day. They are really the rock stars with crazed groupies. (A parent confesses to us today that she blurted out "I love you" upon meeting Dr. Puder. We know the feeling.)

Max's numbers continue to improve. The pace seems to be picking up a bit.

Fri Mar 9, 2007

I'm finally learning how to change diapers. Or the short gut equivalent of changing diapers.

When we first brought Max home, Randy and I each tried to learn every aspect of his care. We quickly discovered that we needed to specialize to develop any sense of competence -- I mix fluids and Randy runs pumps. The plan was for each of us to eventually learn everything. Instead, we settled into our specialized routines. All this time, I've had no idea how to set up Max's TPN pump. This situation would be like the mom of a typical 9-month-old not knowing how to change diapers. I can make my excuses, like that I normally nurse Max during the window for setting up pumps. But this would be like a typical mom saying that she was too busy nursing to learn how to change diapers.

Our collaborative relationship has its consequences. Tonight, Randy notes how lucky we are to be nursing. This reminds me of the time one of Max's case workers asked what kind of breast pump I used. As I struggled to remember the brand, Randy said ``We use the Medela Symphony.'' Yes, we.

Our lives are at last manageable enough for Randy to train me on the TPN pump. Changing diapers has never felt so empowering.

Sat Mar 10, 2007

We have a photo from Thanksgiving several years ago, snapped as Uncle Dave lowers the turkey into a deep fryer. Dave wears safety goggles, Randy stands at the ready with a fire extinguisher, and I hover in the background, sporting the only other face protection we could find, a Darth Vader mask. We call it the Norman Rockwell Thanksgiving.

Randy and I are willing to sacrifice blood for Max. And today we do, inadvertently. Randy nicks his finger while sterilizing scissors, for cutting gauze to treat irritated skin around Max's broviac site. And I push so hard and long trying to spike the tubing into Max's TPN bag that the skin under my thumbnail bleeds from pressure. Meanwhile, Max happily yodels away and eagerly performs his sit-to-stand aerobics routine. It's a Norman Rockwell Afternoon with Max.

Sun Mar 11, 2007

We take Max to the zoo today. "To" is the operative word, rather than "in". We pass through the departing crowds and step up to the gate, only to hear "Zoo's closed!" We think of it as a scouting trip, to confirm that the zoo exists. And that it is a nice walk from our apartment through Franklin Park, considered the crown jewel of the Emerald Necklace. It's a walk well worth doing again.

Mon Mar 12, 2007

Each day, Max wakes up with no idea what's in store for him. A trip to the hospital? A chance to test out his vocal range in a quiet restaurant? A day when we can't quite make it out of the apartment? Today's outing is Jamaica Pond -- perhaps a more appropriate destination than the zoo to go to and not in. Max is such a good sport about the uncertainty of it all. He settles into his stroller, watching in fascination as we take each unanticipated turn, undisturbed by the bumps he can't see coming.

We continue to wait on word from Denver about when we can go home.

Tue Mar 13, 2007

I wish I could be more like Max. I could use a little more comfort with uncertainty.

Randy and I have a simple plan tonight: He will pick up a pizza while I finish Max's cares and put him to bed, then we will eat together over Randy's lab meeting. But during the final step of Max's cares, a basic diaper change, he reaches down and yanks off his bag. At that moment, it's more than I can take. I'm unable to hide my frustration, and when Randy arrives moments later, I continue to vent it. Max does not normally see this. He gives me a calm, curious look, like he simply wants to know, "Mama, why are you kicking at the air? Why are you snapping at Dada?"

I'm not sure what to tell him. A bag change, even an unexpected one right at bedtime, is not that big of a deal. My stress probably has more to do with this week's lab results (which we get drawn a day early because of our teaching). They are still mostly improving, but gradually. We're disappointed again (and a bit concerned) about not getting crazy great scores -- the ones we're trying not to expect. We later discover that Max's steady improvements have actually brought his direct bilirubin all the way down to where he was last July. This is wonderful news -- not something to vent about.

Max goes with the flow, but he does occasionally have brief, irrational meltdowns. I may be more like him than I think.

Thu Mar 15, 2007

The dinner plates in our apartment are decorated with Cheerio-sized circles. Max sometimes uses a pincer grip to try to pick the circles up off the plates. We're not too worried. Judy DeLoache has documented how 9-month-old babies will treat images like the real thing, even trying to suck on photos of bottles. It's hard for children to appreciate the power of symbols -- of one thing representing something else.

Christian's family gives us a 20-oz container this week, for mixing Max's continuous g-tube feeds (which are still 1/2 breastmilk -- for adaptation and immunological benefits, and 1/2 formula -- for absorption). Since Max started on Omegaven, we've been able to gradually increase his feeds. No one knows exactly how much he digests, but his intestine seems to be handling the increases well. Now, for the first time, his daily mix no longer fits in the 10-oz bottles we've used since he came home. The new container helps us to hope for a day when he no longer needs IV nutrition. For Max, it's just a new toy.

Fri Mar 16, 2007

Max is honing his social skills. Today is his most interactive play date yet. It doesn't start that way -- he first sits absorbed in a book while Ellie and Christian romp. But when Ellie approaches to check out the aloof boy, Max reaches out and grabs the pacifier from her mouth. Our sudden laughter sends both babies crying into their parent's arms. (Their startled faces remind me of how I feel when I've cranked up the volume on video skype to hear the quietest student in my class or lab, and then someone in the group makes a good joke.) Christian delivers Max's best social skills lesson, coming in close to reassure him, and presenting him with a big blue ball. I want to remember this moment the next time I feel like kicking at the air.

Sat Mar 17, 2007

Doctors are trained to be skeptical. As Dr. Puder says, "If you doubt a new treatment in medicine, 99.9 percent of the time you'll be right."

All 35+ children on Omegaven have shown clear improvements. In contrast, the published mortality rates for children on the standard lipid are 37-78 percent. Based on these data, there is at most a 1 in 6000 chance that Omegaven is no better than the standard lipid. These data are not enough to convince everyone -- serious consideration is still given to the possibility that the Omegaven patients recovered spontaneously. For Max, this skepticism about Omegaven just means the inconvenience of being away from home to receive it. For other babies, it may mean never making it home.

Tue Mar 20, 2007

Today's labs just seem wrong. Max looks so deliciously pink and happy. He is growing, and getting stronger. He is starting to feed himself.

But the labs say that he is just holding steady. Apparently, pauses in progress sometimes happen, particularly for older babies, who take longer to recover in general. Increasing Max's feeds (which we've done twice in the last week) may have contributed -- this can lead to more bacterial products in the portal (liver) circulation and increase inflammation. So we'll cut back on the feeds, returning to our old 10-oz mixing bottle for now. The 20-oz container from Christian's family will sit on the shelf. We'll aim for a less fickle symbol of hope next time.

Wed Mar 21, 2007

I give a talk at Harvard about my research. It's my second professional opportunity to include a gratuitous photo of Max. I thought it would be much more than this. A chance to reflect on how far we've come since I first had to decline this invitation, last summer, when Max was on his way to his fourth hospital and we had no idea when (or if) he would ever come home. A chance to revel in a group scientific discussion where my main contributions aren't "Can you say that again?" and "Can you hear me now?" (Video-skype is giving us the luxury of working remotely, but it isn't winning us any teaching or mentoring awards.)

The talk does provide those opportunities, but the most salient part of the visit turns out to be the shock and sadness people feel when hearing about Max's condition. Randy and I have had almost 10 months to adjust, but their reactions bring back all we had envisioned when Max was born -- when his measurements and tests looked perfect, and we were wet noodles of bliss and love, planning to head home in a couple days as a family. I want to say to my colleagues, "No, no, you see, Max is going to be okay." But I think about his pause in progress. I want to say, "We've come so far." But I see how strange it appears for us to be living in limbo out here, waiting for Denver Children's to say we can come home.

Thu Mar 22, 2007

There is a George Carlin book in the apartment filled with witticisms like "In most polls there are always about 5 percent of the people who 'don't know.' What isn't generally understood is that it's the same people in every poll." These are remarkably unfunny when I read them to myself, but Randy and I find ourselves chuckling when I read them to him.

Mike Tomasello, a developmental and comparative psychologist, has proposed that our uniquely human cognitive abilities (like language) arise from our uniquely human desire to share our experiences -- just for the sake of sharing, not for any other purpose.

This afternoon, Max relaxes in Randy's arms, enjoying his thousandth nystatin syringe. He has loved this sugary medicine from the start, first signing for it several months ago. Today, he pulls the syringe out of his mouth, contemplates it, and for the first time, holds it out for Randy. Randy looks sufficiently curious that Max sticks the syringe in his mouth. Randy takes a hit (and later confirms that nystatin is in fact pretty tasty). They go through several rounds of this -- Max taking a couple sucks, then offering the syringe to Dada, and eagerly sharing it upon seeing his interest.

Who knew the roots of cultural evolution could be so sweet?

Fri Mar 23, 2007

We're starting to wonder whether Max will remember home by the time we make it back there. He gets a good reminder today, with a visit from Boulder friends Dick and Jan. Max shows no stranger anxiety, nothing like the dreaded Kenny-response. Dick and Jan bring a sack of Max's favorite stuff from home, provisioning us for the continued wait for word that we can return.

Sat Mar 24, 2007

We don't quite have the zoo schema down. We do manage to make it there before closing today. We don't realize that a 40 degree day means no kangaroos or giraffes (whom I'd been talking up to Max the most) -- they're somewhere inside, off limits, avoiding frostbite. It doesn't matter to Max, these unfulfilled expectations. When the zoo was closed a couple weeks ago, it was just a perfectly nice walk. This time, there's still plenty of entertainment to be had with the gorillas, bats, zebras, and an ostrich, even if none of them come close to sharing a nystatin syringe.

Sun Mar 25, 2007

What better way to celebrate a 10-month birthday than with a scientific conference? A major biennial meeting on child development is coming to Boston this week. Max and Randy and I are planning to hang around the main entrance of the convention center, ~4:00 Friday afternoon. If you're attending the conference and would like to meet Max, feel free to come by -- please just make sure you are healthy and your hands are well-washed! We'll post any updates to the plan on this page.

Tue Mar 27, 2007

Each family has its way of paying tribute. Austin's mom refers to Dr. Puder as "a short gut icon" on her care page -- a term that now seems to be making the rounds. Christian dressed up as Dr. Puder for Halloween last year. Our mode of expression is a t-shirt -- conceived by Mom, created by Dad, produced by Randy's step-sister Katy (via her baby t-shirt company), and "sponsored" by Grandpa Dick. (The shirts from Dick are available as gifts for 25 Omegaven families). We hope the shirts will be appreciated in the spirit intended -- in honor of the man and the fish saving the lives of so many babies.

Max's scores are improving again. His bilirubin measures are now better than they were last July.

Thu Mar 29, 2007

I guess there doesn't always have to be a moral to the story.

Christian is wearing his Robeez pirate shoes while playing with Max this morning. Max had a pair of lion Robeez shoes, a gift from Randy's cousin Corrie, but we lost one of them after coming to Boston. I explain to Christian's mom that we kept expecting it to pop up somewhere, but had finally given up hope. This afternoon, Randy finds the missing shoe under our bed.

We've been feeling increasingly resigned to not getting home any time soon. Over dinner, Randy and I brainstorm about ways to make our lives manageable -- and enjoyable -- while living in exile indefinitely. The phone rings. It is GI Jason at Denver Children's, indicating that they might be able to bring us home soon -- perhaps on the order of days rather than months. Details are currently being worked out.

The moral of the story seems to be to give up hope, and things will work out better than you expect.

Sat Mar 31, 2007

It has been a long time since I've cried. Well, there were tears of joy when I heard about the 6-week old boy coming here for Omegaven after his parents found Max's page. We've been so excited to meet one another. They were "busy" during our first opportunity, in the crazy medical sense that we've somehow grown accustomed to -- the baby was having heart surgery. He is now doing well. His scores have shown the expected Omegaven blip, so hopefully they will start improving soon.

There were also recent tears of joy when we learned we might go home. Those were all good tears.

Today, we say good-bye to Christian's family. They are going home to New Jersey for the week, then returning to Boston for one final checkup, and going home for good. We plan to return to Boulder while they are away. We don't know when we will see each other again.

There is joy here too. Christian is going home in record post-transplant time. He and Max are thriving, each in his own way. We are pretty much keeping our pact to move out of the apartment at the same time. None of us wanted to face the prospect of being left behind.

But it's the end of an era, a Camelot in that same crazy medical sense. Instead of castles and romance, it was housemates who could check in with each other late at night, for help with pumps or advice on whether an ostomy looked unusual. Instead of sailing and rock-climbing (like in our grad school Camelot years), it was snatches of conversation about blood draws and fish oil and fear and hope, that made our lives as medical nomads seem remarkably natural. Christian had been getting increasingly excited to see Max. Max had recently grown comfortable enough to reach his hand out to Christian, touching his sleeve or his shoe, lightly, curiously, like you might touch a bird. Saying good-bye to all of this brings tears of sadness.

Sun Apr 1, 2007

Max is looking good.

Today was supposed to be his second modeling stint -- sporting Neiman Marcus fashions alongside members of Colorado's professional hockey team, for a Denver Children's Hospital benefit event. Perhaps it's for the best -- hockey bruisers are presumably at least as scary as Kenny.

Max instead displays his cuteness in more informal venues around Boston, for his die-hard fans at the child development conference, and for the usual adoring strangers on public transportation. On the bus yesterday, the mom of a 9-month-old boy ran through a checklist of comparisons with Randy. Your baby has teeth? Mine doesn't have any yet. Can Max pull himself up to stand? Oh, Justin can't yet. What kind of foods does Max eat? Oh, that's much more than Justin. Part of me wants to ask: Does Justin need a tube in his stomach for continuous feeds? How about a central IV line for the majority of his nutrition?

Randy once felt compelled to explain Max's condition as early as possible in these encounters, to answer the unasked questions in strangers' eyes, as they settled on Max's jaundiced skin and the not-quite-whites of his eyes. But we sense these questions less and less. This may say as much about changes in us as in Max. On the subway back from the aquarium today, the mom of a 2-year-old advises us on what a handful kids can be. Regular parenting talk. Not the stuff of gold angel pins.

Mon Apr 2, 2007

Christian's family was allowed one sentence to communicate to their donor family. A single sentence, to express all they felt about the family deciding to donate organs when their baby died, allowing Christian to live. An impossible task.

Randy and I have no such restrictions on us when go to Children's Boston for Max's last appointment this morning. Trying to convey our gratitude still feels impossible. How could we ever sufficiently thank his team here? -- for halting the seemingly inevitable progression of his liver damage. For transforming him from green to pink. (Max's measures continue to improve, pretty dramatically with today's labs.) For allowing us to bask in our baby squealing in delight when we accept whatever he offers to share -- a syringe, a carrot, a toy. In the end, Randy and I can only stumble through teary thank you's, again and again. We'll leave it to Max to convey more eloquent thanks someday.

Tue Apr 3, 2007

Today feels like a dream. It starts out as a bad one, as we wait an hour for a cab to the airport, and face the growing sense that we won't really make it home. But we wade through the usual airport security chaos ("There's a kid with an insulin pump here!" "Let me get the boss.") with time to spare for semi-discrete milk pumping and Max's cares. Max does his wildly good traveling baby thing -- waking in the apartment just when we're ready for him, falling asleep as soon as we board and napping for 3 hours, eating and playing, and then fussing just a a bit around landing to remind us how good he has been.

Randy and I can't get over how squinty-bright Colorado is. Nana informs us that it's actually a bit overcast. As we come over the hill into Boulder, I'm reminded of the saying that it is "20 square miles surrounded by reality." We need to pinch ourselves to believe this is happening. Or get rear-ended, which happens to us just blocks from our home. Great Aunt Carse's van sustains some damage, but all 5 of us (and the other guy, and his dogs, whom he fingers for distracting him) are fine.

Max has lived in our house only a couple weeks longer than he lived in Boston. But he seems immediately comfortable here. Boston, too, already feels like a dream. I can't wait to wake with Max tomorrow.

Wed Apr 4, 2007

Everything feels strange here. The water pressure of the shower. The stillness of the house -- no buses or sirens or bakery traffic. My students -- up close and personal, instead of in a little box on my laptop. All of Max's stuff strewn about, not packed away in tight apartment spaces.

Max seems just fine with the change of scene, sleeping through the night, napping well, and waking happy. And soaking in the attention of Randy's extended family (including 4 great aunts, his great-grandmother Mautch, and his 2-week-old second cousin!), who welcome us back this afternoon.

We try to savor every bit of being home. We know how quickly the strange will feel routine again.

Fri Apr 6, 2007

When we present Max with two books, he almost always picks the more novel one. But since we've been home, he has reliably chosen his old Boston books over his new Boulder options. Perhaps it's his way of easing the transition.

The clouds and cold and rain help too. We're getting blamed for bringing them from Boston, but find them oddly comforting. The gift croissants that awaited us have softened our bakery withdrawals. And it helps so much to be able to enjoy visits from Aunt Katie, who arrived yesterday from Portland, and Nana -- particularly given that we were bracing ourselves to live in Boston indefinitely only last week. Now we just need to figure out video-skyping with Christian.

Sat Apr 7, 2007

Boston changed all of us. Max's health was obviously the most important transformation, but there are others. The cutest development may be Max's methods of charming people, like reaching out gently to touch them, as he had started to do with Christian. He works this technique to full effect with Aunt Katie. And since discovering the art of sharing, he can't seem to get enough of it, which makes it hard for everyone else to get enough of Max. He's even working on charming our kitty Fuzzy, who has been far more curious (and brave) since we've come home to her. He gives Fuzzy slow, easy smiles. They don't melt her like his techniques on people, but she sure seems to like hanging around him.

This afternoon, we drive down to Denver for another big family gathering, at the home of Max's second cousins. Max meets his great-grandmother Helen, who lives just an hour from us. His larger untethered window (6 hours) helps make this first-time encounter possible. But probably at least as important is how Boston changed Randy and me. Navigating life in a new place, and swapping war stories with parents in similar (or even harder) situations, expanded our sense of what feels manageable.

Tue Apr 10, 2007

There's something to be said for crazed groupies.

This afternoon, we run into a neighbor who hadn't realized we were away. We don't know her very well, but it still gives us kind of an empty feeling. As we continue our stroll around the block, another neighbor calls to us and comes running out. She welcomes Max back, and wants to know how Christian, Austin, and Ellie are doing. Randy and I are touched and amazed. Max just plays it rock-star cool.

Thu Apr 12, 2007

Everything is relative.

The Denver pharmacist who coordinates Max's TPN is alarmed by his bilirubin numbers today. But they are in fact continuing to improve nicely. She had just forgotten how high they were before. (It has been 3 months since his labs were last drawn by our Colorado home health care nurse.) This boy has come a long way. He still has a ways to go, but the pace might pick up soon. His C-reactive protein (or CRP, a measure of inflammation, which is normally between 0 and 1) has gradually decreased from 2 to .6. The most dramatic improvements with Omegaven seem to happen when CRP hits .5.

Max's absolute numbers for growth and strength might be as alarming as his bilirubin. He had stopped gaining weight before we went to Boston, when his omega-6 lipids were cut to save his liver and his life. And his muscle development was probably slowed by extended hospitalization, multiple surgeries and infections, and liver damage. But he has been slowly, steadily growing on Omegaven, and increasing his range of movements and his endurance.

What we see is Max getting better and better.

Fri Apr 13, 2007

I wasn't allowed to wear my hair long until I reached 7th grade, and have had it long ever since. Junk food was unrestricted (Oreos and Ruffles potato chips were one of my favorite after-school combinations), but now it doesn't interest me. Randy feels like he can never quite make up for all the junk food he was denied growing up.

Before Max was born, Randy's suggestion for our disciplinary strategy was simple: Mom should be the disciplinarian. Now his strategy is even simpler: We should never say no. That would only make Max want the thing we denied even more.

This afternoon, Max throws his new cup on the floor. He loves drinking from cups. He is probably not absorbing much fluid -- this is generally the job of the large intestine. But he loves the whole drinking ritual -- demanding the drink, bringing it to his lips, slurping it down, and slamming the empty cup on his high chair tray. Or today, throwing it on the floor. Randy just washes it off and gives it back. Max doesn't throw it down again.

Sat Apr 14, 2007

We need a reality check.

The day we flew home from Boston brought an interesting confluence of events. I received an invitation to speak in Paris this fall, a French colleague in Denver emailed to say that she would be our personal guide should we ever end up in Paris, and Max showed off his wildly good traveling skills. I planned to decline the invitation, but now we're actually contemplating making a family trip of it.

The idea is not dismissed as completely crazy when we float it twice today. Granted, the first time, over brunch, is to a 15-year-old Belgian friend who traveled here solo to spend 3 weeks as an informal exchange student. And the second time is with Junko, Dave, and Toshio, who are preparing to summer in Germany and then take a sabbatical in Thailand. It's a pretty receptive audience for the simple idea of a few days in Paris as a family, with some pumps thrown in.

We may yet realize this idea makes no sense, that our expanded sense of what feels manageable has transcended the boundaries of reality. But it's fun to think about strolling the Seine with Max in the meantime.

Sun Apr 15, 2007

Max's nurses prepared us for more than just bag changes and broviac line care.

My conversations with Max these days go something like this. "Max, do you know how much mama loves you? SO much!" Max's reply: "Dada." I might explain, "Dada is still sleeping. That's why we get this special morning time together. Isn't it great?" "DADA."

One of Max's nurses, who was a single mom, had warned me that her baby said Dada incessantly anyway. So I guess Max may not be trying to say he prefers the never-say-no guy, despite emphatic appearances to the contrary.

Speaking of which, some challenges have been issued regarding Randy's allegedly junk-food-deprived childhood. His story doesn't seem to square with the family lore of countless episodes involving brownies and Chips Ahoy cookies. We may need to rethink our disciplinary strategy. And if I ask Max what mama means by "we," I bet he'll answer correctly.

Mon Apr 16, 2007

Several years back, while waiting at a check-in line at the airport, I noticed that the guy behind me had no arms. Or just twig-like protrusions for arms, which he seemed be using to move his luggage along. I had never seen anything like this. I tried not to stare, but I couldn't help sneaking glances to try to make sense of what I was seeing. I'm sure it was painfully obvious to him. This was not my proudest moment.

Max is looking so good. It's not just his rosy cheeks from the farmers' market sun this weekend. His skin is clearly less jaundiced. We know the eyes are the last to turn, but they too, are starting to lose some of their yellow-green tinge. He looked so different to me yesterday morning that I rushed to take his temperature. I later realized that what was different was just how good he looked. Strangers may soon be staring at him only for his cuteness -- at least during the 6-hr window when when he is off his pumps.

It wasn't always like this. We felt the lingering looks that Max got at the height of his pizza face days. Those looks (and that gold angel pin) were all that we got though -- unlike Christian's family, Randy and I were spared accusing questions about whether our child was an alcoholic or about the quality of my prenatal care.

Still, dealing with the stares wasn't easy. And we know we will continue to attract them with our pumps. It helps me now though, thinking about what I did standing in that check-in line years ago. Any of these rubberneckers could have been me.

Tue Apr 17, 2007

Compliments come in all forms. At Max's routine appointment at Denver Children's this afternoon, we run into Nurse Gretchen, who first checked Max into the hospital last June, and switched his mood from serious to flirty after his return from Pittsburgh in August. She can't believe how good he looks, and asks expectantly if he got his transplant. I think about how spectacular Christian looks with his, and take this question as the highest form of compliment.

Max makes the rounds, getting reacquainted with GI Jason and team at Children's (who warmly welcome him back with a big sign and cuddly bear), with his pediatrician in Boulder, and with Nurse Barb from St. Joe's, where Max spent his first 3 weeks of life. It's a big job, being the regional Omegaven spokesmodel, but Max seems more than up to the task. We hope that as he helps spread the word, and as other short gut kids get transformed from green to pink (or are prevented from turning green in the first place), more and more people will think Omegaven before they think transplant.

Wed Apr 18, 2007

That Christmas ornament -- the one that said "Wishes" on the outside and "do come true" on the inside -- could have opened to reveal additional layers, in the style of Russian dolls. One layer could say "even the crazy wishes" and the next layer, "and the wishes you can't even dream up."

Our crazy wish for our home and cats during our Boston adventure was for housesitters who could arrive as soon as we left and leave as soon as we returned -- without any of us knowing when either would happen. Even better if they were nice sabbatical visitors, less likely to trash the place than our last extended housesitters, who threw a party and flooded the basement in our previous home. And better still if they could entertain occasional requests to locate and send Dr. Seuss or medical putty. And so it was, with John and Andrea, on sabbatical in Boulder from England, with an alternate place to live whenever we were allowed back home.

A wish we couldn't even dream up is for Max's old friends from St. Joe's to help us out as we search for a new nanny. (Nanny Shannon wasn't able to wait around indefinitely for her job with us to re-materialize.) So Nurse Barb, NP Kristin, and Max will get to know each other again, and Randy and I will get a breather a couple days a week.

The big wish is of course for Max's health. His bilirubin numbers continue to improve with today's labs. The pace is still steady, which is fine. With Max's measures gradually getting closer and closer to normal, we may not have much time left to wish for dramatic improvements anyway.

Thu Apr 19, 2007

You can't judge a book by its cover. Or by its title, which is often all baba has to go on when ordering Japanese books for her grandsons. Toshio was the recipient of "Otousan" (Dad), which sounds like a nice enough children's story, but actually tells the sad tale of a boy after his mother dies.

"Norimono Ippai" (Lots of Vehicles), which Max picks for the first time this morning, turns out to be a safer gift. All modes of transportation are rendered, looking remarkably cute with just the addition of eyes. Max has ridden in most of the vehicles that appear early in the book (jidousha = car, takushi = taxi, kyuukyuusha = ambulance). I wonder if later vehicles will provide the opportunity to talk about things he might ride in for the first time in Paris, but it turns out to be unlikely (shoubousha = fire engine, gomi shuushuusha = garbage truck, kamotsusen = cargo ship).

No one has balked at the idea of us going to Paris. We realize that the head-shakers might be keeping their thoughts to themselves. But so far, most responses have been of the ooh-la-la variety -- including among Max's doctors, as well as from Ellie's mom, who knows just how many hours and suitcases and plans are required to handle all the pumps and syringes and bags. We feel encouraged enough to start referring to the shinkansen as the TGV in future readings of Norimono Ippai.

Fri Apr 20, 2007

Randy is starting to question Max's motives. He has noticed that the syringes Max offers to share tend to be on the empty side. But today, Max pulls off one of his socks and gnaws on it, and it still seems perfectly good each time he offers it to me to chew.

Sat Apr 21, 2007

We make it to and in the Denver zoo. Max is much less fascinated by the giraffes and elephants than by big-kid friends Andres and Lucia. Their parents are clearly old pros at this zoo thing. They've developed an eye for weather forecasts that might scare away crowds but turn out to be quite pleasant. They're not even taking photos. I love thinking about eventually reaching this point with Max, in the same way I love thinking about him being horribly embarrassed by me someday.

Tue Apr 24, 2007

Planned hospital visits are far less stressful than unplanned ones.

We made a planned trip yesterday to pick up Max's first batch of Omegaven shipped to Denver. Everything is now in place for us to continue his treatment here. Exciting, and for me, relieving. Of course, Randy never worried about the delays, because there was no point to worrying.

Today brings an unplanned trip to Children's, and a different kind of excitement and relief. The day starts in a routine enough way. I am heading out the door for a dentist appointment, leaving Max in good hands -- not just with Randy, but also with PT Betsy, OT Judy, and case manger Laura, who are here for Max's semiannual assessment. But as Randy tries to "DC" Max (i.e., to disconnect him from his pump), blood starts dripping onto the dining room floor. Max's broviac -- the heavy-duty IV responsible for delivering most of his nutrition and now his fish oil -- has broken. His blood is now reversing out of it.

We clamp the broviac above the break and head to the hospital. The surgery to replace a broviac is minor -- this is the surgery Max had just before we left Pittsburgh (when his broviac got dislodged from its insertion point at his skin) and just before we left Denver for Boston (when his broviac got clogged by an antibiotic). But I don't want to face signing another round of consent forms with a surgeon. It's old hat, I know, but I just don't want to hand Max over again. It seems harder as he gets older, and grows more capable of calling for us (well, for Dada) and signaling that he doesn't want to leave our arms.

It turns out that he doesn't have to. The broviac does not clog during our 45-minute drive to the hospital and the 45-minute wait there. (Clogging from blood clots is a risk if you aren't able to DC properly). So the broviac can be repaired rather than replaced. Randy and I entertain and feed Max during this straightforward procedure. We're good to go while the forecasted snow dump is still coming down as rain.

This simple outcome brings us enormous relief, but also pause for thought about possibilities like Paris. It's not clear why the broviac broke -- these things can just happen from wear and tear. Nurse Stephanie, who repaired the broviac, points out that we could certainly manage Paris if we travelled with a nurse. "Bring me!" she suggests.

Wed Apr 25, 2007

Most of our work can happen at any hour. Randy is often programming at 2 am, and I write papers during windows however big or small, scattered throughout my waking hours. Our students come to our home in the evenings, for meetings after Max is sleeping.

But today, an event is scheduled for the specific time period of 3-5pm. A sophomore in my lab is presenting the results from her study on infant memory at the university's undergraduate research day. This is the study Max participated in 6 months ago. I'm excited to show up with him. Return visits from child participants can make researchers feel old, highlighting just how much time has passed, but the student and Max are still sufficiently young to avoid this awkwardness. Randy and I devise a Max-handoff plan that will make it possible for Randy to teach our class and run his lab meeting, for Max to get his weekly blood draw and later get reconnected to his pump on schedule, and for me and Max to attend Meghan's presentation.

Almost everything unfolds according to plan. (The blood draw runs a little late, so we probably won't get results until tomorrow.) But as Max and I are heading out the door, the g-tube area in his stomach springs a leak. It's no big deal -- a big spit-up of sorts, except out the stomach -- and can happen after a vigorous nursing, like the one Max had just helped himself to. It takes time to clean and re-dress it though. We end up missing the big event.

I'm disappointed, but it helps that everything is relative. This is much better than what happened as I was walking out the door yesterday.

Thu Apr 26, 2007

I rediscover dancing with Max. It has been a while. He has been busy playing the piano, picking new books over old ones once again, and sitting like a big boy at his "work station" -- on a box in front of a step that functions like a desk. The sitting helps him strengthen his torso and practice weight-bearing on his feet, and unlike most of his physical therapy, seems endlessly entertaining. But dancing may be the greatest fun. Max's giggles provide a good antidote to his labs, which have worsened slightly this week. A blip, which Dr. Puder assures us (again) that they're accustomed to seeing, particularly in older babies like Max. My quads are burning after 5 minutes of squealy bouncing, so I hand Max over to Randy for the next song. As I'm walking away, I caution, "Don't be too crazy, I just nursed him." I turn back to see Randy swinging Max around upside-down by the ankles. And Max giggling.

Fri Apr 27, 2007

Max spends the day with Nurse Barb. I feel restored, revitalized, ready and able once more. And today is my day of teaching and meetings at school, so Barb's visit doesn't even technically affect me. It's just knowing that she is taking care of Max, and feeling vicarious relief through Randy. Or maybe it's the most delicious chicken-bean-avocado soup ever to exist, which she cooks up for dinner. Whatever it is, it's good.

Sat Apr 28, 2007

Randy looked at me the other day and asked if I was nuts. We were out doing errands, and I suggested getting a toy for Max. I think we've bought him a grand total of 4, so I was feeling some kind of provisioning void. But yes, I was nuts -- Max has enough toys for all the neighborhood kids, not to mention the dogs and cats.

He will be 1 year old in one month. (He celebrates his 11-month birthday by refusing to miss a minute of it, and taking his nap-deprived fussiness to farmers' market brunch with housesitters Andrea and John, through a nanny interview, and on to dinner with Toshio and family.) We hope to throw him a big birthday bash -- most likely on Sunday May 27 (if you'd like to pencil it in), but you just never know. It would be nuts for him to receive any gifts. It's worse than nuts that other kids who need Omegaven are not receiving it. Word is spreading, but there are still babies with progressing liver damage whose families are being discouraged from pursuing Omegaven. So if you know anyone who can help Omegaven reach and save more kids -- a nurse, a journalist, a philanthropist, Oprah -- please spread the word. That would be a great gift to celebrate Max's first year.

Sun Apr 29, 2007

Max gets his second haircut -- another quick-snip job by Dada. Lots of snips. During another nanny interview this afternoon, I can't stop remarking how cute Max is. It's a little embarrassing in retrospect. The nanny can't get over how much hair Max (still) has.

Mon Apr 30, 2007

Randy thinks Max is starting to recognize that he has some stuff on his body that the rest of us don't. Maybe Bennett Clarence will come in handy sooner than we thought. He's the Cabbage Patch Kid configured just like Max -- a unique gift from Austin's mom.

I once tried to tell a free-spirited aunt that Randy and I thought she was unique. I didn't know the Japanese word for unique, so I constructed the phrase "futsuu-janai," or typical-not. Although this comment might come across as an insult in Japanese culture, which emphasizes fitting in, I explained that futsuu-janai would be a compliment in America, which emphasizes standing out, and this was how we meant it. I even described studies showing that Eastern and Western students differ in what they pick when presented with several blue pens and one red pen: Easterners pick a pen from the majority color, Westerners pick the uniquely colored pen. I was rather pleased with myself for conveying all of this in my broken Japanese.

Later in the trip, we met with the late Giyoo Hatano, a developmental psychologist. He took us out to lunch in Tokyo with his lab group, which seemed unusually large. I suggested that he might be futsuu-janai in the number of students he was advising. The students tittered and looked at the floor. Giyoo explained that futsuu-janai, when applied to a person, means insane.

I don't know what my aunt thought about us earnestly calling her insane, in a complimentary American kind of way. But it's quite alright to be unique. I hope we can do a better job conveying this idea to Max.

Wed May 2, 2007

When we said good-bye in Jamaica Plain, Christian's mom gave Max specific instructions about how much to drop his bilirubin each week. She was pretty demanding, but Max comes pretty close to complying with today's labs. His bilirubin shows the second-biggest decrease since he started Omegaven, and his CRP is down to .4. We're in the realm of crazy-great improvements.

Thu May 3, 2007

We're getting used to supervisors being called over to deal with us, like in airport security lines. Today it's at the post office, when I drop off a large box of used needles. I go through 6 a day, injecting additives into Max's TPN bag before it gets hooked up to his pump. The needles must be disposed of in a special container and shipping box, which is marked Biohazard. The postal worker takes one look, says "Scary," and summons his boss. That's how I used to feel -- unqualified to handle this stuff, and terrified that I would touch a sterile surface to a non-sterile one and end up sending Max back to the hospital. But the once-laborious process of injecting the additives is now an easy 15 minutes that I almost look forward to. It's protected time, like showering (when it happens) or brushing my teeth.

Fri May 4, 2007

Max is done with sitting. For months, he has been able to sit independently and play with his toys almost indefinitely. But now, as soon as he is set down, he agressively thrusts himself backward onto the floor, refusing to sit. I worried that he was in some kind of pain. Randy chalked it up to rebellion -- a precocious terrible twos. The more likely story, it appears, is that Max is more interested in moving than in sitting.

Increased interest is a big step. Max's abdominal surgeries limited his early belly time, which limited his upper body strength. So his first maneuverings, in Boston, were on his back -- elbows out, gyrating his hips. We called it the Chris Farley dance. Max could navigate all around his crib with it. He's honed that dance so that he can now spin a precise 360 in 5 seconds flat.

The Chris Farley satisfied Max's needs for some time. But as he grows impatient with sitting, he's getting stronger on his hands and knees. Randy and I think we can detect small changes day to day, confirmed by nurse-nannies Kristin and Barb delighting in his progress week to week. He's raring to go. So we're shifting our physical therapy routines from sitting to crawling -- helping Max get wherever he wants to go, whenever he's ready to go there.

Sun May 6, 2007

Last Christmas, Randy gave Toshio a couple of model airplanes. Toshio unwrapped them and asked, in genuine wonder, "Why do you keep giving me these?" I think the answer was that Randy didn't have anyone else to give them to.

Toshio celebrates his 6th birthday this afternoon with a party at Pump-It-Up -- a room filled with enormous inflatable structures, blaring music, kids romping and screaming. It is clearly the craziest scene Max has ever witnessed. He greets it with appropriate astonishment, then turns his attention to happily whizzing down inflatable slides with Dada, bouncing on an inflatable arena with baba (who is visiting for the occasion), and watching the big kids go go go -- including Mama and Dada racing on the inflatable obstacle course.

We give Toshio the game Battleship. His excitement upon receiving something he actually wants is evident. He should thank Omegaven. Max may ultimately react to model airplanes with the same puzzled disinterest as his cousin, but Omegaven means Randy can now imagine sharing these gifts with him someday.

Wed May 9, 2007

When Max sleeps more than usual, Randy figures that he is growing. When Max sleeps less than usual, Randy figures that he is digesting more of his food. I can't fathom this kind of relaxed optimism. Randy can't understand why changes in each direction worry me.

Randy gets the first look at Max's labs from today. Max comes close once again to meeting the strict specifications from Christian's mom for dropping his bilirubin. His CRP is less than .2. We dance a celebratory dance.

When I take my own look later, I see the one blip in the labs -- Max's hematocrit is continuing to drop, as it has over the last few weeks. He may need a blood transfusion, which we had thought was generally unnecessary once kids start Omegaven. Adding to my worry, Max's stoma output (which we measure) has been increasing over the last couple weeks for no apparent reason. We'll watch these measures closely with Max's docs.

In true cape-and-tights form, Randy figures that Max's system is just in flux as his liver heals so beautifully, and things will be back in sync soon.

Thu May 10, 2007

We won't be having crepes on Mother's Day. Randy bought all the ingredients last night, but a skin test this afternoon reveals that Max is allergic to eggs and cow's milk. He hasn't been ingesting them, at least not directly, but I have been. So out they go. The good news (which we come around to after the initial dismay) is that this is something we can control, which should help Max to be less itchy. And the dietary restrictions may be temporary. Most kids outgrow their food allergies. Maybe the promise of crepes will help me through the sorrow of weaning, which is getting harder and harder to imagine facing someday. All of the other dozen allergy tests come back negative. The cats can stay.

Fri May 11, 2007

Omegaven has eggs in it. Or more precisely, an emulsifier (lecithin) derived from egg yolks. Precision is important, because it is the egg whites that Max is allergic to.

GI Jason recommends that Max stop nursing for 1-2 weeks, while the egg and milk products in my system clear out. (Two weeks is his initial estimate. One week is what he comes back with after seeing the look on my face.) Max's continuous g-tube feeds will also switch from 1/2 breast milk to pure formula during this period.

Sat May 12, 2007

One of my pregnancy books suggested that being pregnant provides an excuse for getting a whole new wardrobe. That prospect held little appeal for me. But, I'm pretty excited about exploring whole new cuisines as a result of Max's milk and egg allergies.

It probably helps that we started our non-lacto-ovo explorations with ice cream. And that we're in the right place at the right time, as the clerk at our local gourmet vegan market puts it. What probably helps the most is that our impressions of this otherwise futsuu-janai restrictive diet were shaped by postdoc Nicole Speer. Her savory vegan "chicken noodle soup" nourished us through Max's staph infection in January, and gives us hope for our revised Mother's Day breakfast menu -- vegan crepes!

Sun May 13, 2007

On Max's birthday, 50,000 people will take to the streets of Boulder. It's the BolderBoulder, the annual 10K race that closes off many roads. The apartment we were renting last year was right on the race course. We were worried we'd get blocked in and show up on the evening news ("Runners assist with parking lot birth!"), but Max had the good sense to arrive the night before the race.

That's a lot of people. It feels like it took at least that many to get us here, celebrating my first mother's day as a mom. Not just in the Bill Bryson sense of the crazy improbability of any of us existing at all, of every single one of our ancestors on both sides being healthy and lucky enough "to perpetuate the only possible sequence of hereditary combinations that could result -- eventually, astoundingly, and all too briefly -- in you." I mean all the people who have allowed Max to live, and our family to thrive:

from surgeons to scientists, stoma queens to social workers, students to strangers
nurses to neonatologists, nannies to NICU neighbors
colleagues to case managers, catsitters to crazed groupies
GI docs to g-tube specialists to journalists
allergists to anesthesiologists
insurance representatives to infectious disease teams
lactation consultants to Learjet pilots
occupational therapists to obstetricians to Omegaven-providers
housemates to home health care to Hirschsprung's families
donors to dieticians to doulas
pediatricians to parent networks
radiologists to remodelers
transplant and transport teams
vegans to video skype developers
pharmacists to physical therapists to family and friends

They make it possible for us to celebrate over crepes today.

Mon May 14, 2007

Randy and I love hearing stories about kids coming off of TPN. We obviously hope that Max will too someday. We don't know when or if it will happen though. So it is also nice to hear, as we do today, about a boy described by his mom as living a life full of Little League, football, swimming, snorkeling, traveling, eating, and TPN.

Wed May 16, 2007

When we left Denver for Boston, we got the feeling that Max was viewed as a bit of a guinea pig for this region. Now he's being described as a pioneer.

His bilirubin continues to drop, gradually with today's labs, and his CRP is still less than .2. His hematocrit is back up (thanks to a blood transfusion last Friday) and we're working on his high stoma output (via a 5-day course of an oral antibiotic, flagyl, starting last night). We dreaded both treatments, unnecessarily. It's draining and dismal, roaming the hospital corridors for several hours with an IV pole and a bag of blood, but the transfusion is straightforward and effective. Max may need these periodically, because it's hard to absorb iron with a short gut. We can work on ways to see if he'll absorb more, particularly as his feeds increase. Iron isn't generally given through the IV because bacteria like it too much.

We dreaded the antibiotic, mainly because we hadn't dealt with it before. But this is standard treatment for bacterial overgrowth in the functioning intestine of short gut kids. (The main symptom for such overgrowth is unusually high stoma output, which Max has had for the last week.) Many kids take these antibiotics preventatively, cycling through different kinds to prevent antibiotic resistance. It's easy to administer the flagyl straight into Max's g-tube. And miraculously, he seems to have barely noticed the ban on nystatin, which is incompatible with flagyl.

We'll keep working toward a little less dread of the unknown.

Thu May 17, 2007

You just never know. But our plan is to celebrate Max's first birthday at our home in Boulder, on Sunday, May 27, 1:00-4:00 pm. We'll post any updates to the plan here.

You and yours are invited -- please just make sure you are healthy with well-washed hands! We'll provide drinks and snacks. Freel free to bring something for the grill for yourself, and/or a side to share if you are so inclined.

In lieu of gifts, please help spread the word about Omegaven if you can (or help brainstorm ways to spread it). Randy and I have faced enough ridicule for how much stuff Max has (even though we've bought him next to nothing, really!). So please bring yourself -- but no gifts -- to celebrate with us.

Sun May 20, 2007

My milk from the last 8 months of pumping is gone in minutes. Just the time it takes to load it into two hefty coolers for a milk bank donation this afternoon. I'm grateful that it will sustain other babies, instead of being discarded in light of the recent vegan turn of events. And these gallons are an easy price to pay for the chance to nurse Max all this time -- nourishing him in restaurant parking lots when we forget to pack his food, calming his frenzies in a hospital conference room or zoo parking lot, and relaxing with him at home after a long day. If I could magically share a single feeling with Randy, it would be this one, of satisfying Max's needs so completely in these moments. The closest I'd come to this feeling before nursing Max was stroking the ears of our purring kitties. So, it is sad but not devastating, parting with the milk intended for Max, and turning to allergen-free nursing and replenishing his supply.

Mon May 21, 2007

Grandpa Dick doesn't mean to be ungrateful. So he tells us, over dinner with Grandma Julia during their visit from LA this weekend. But he has to say, with a wink, that he finds this visit much more enjoyable than previous ones. When they came last summer, Max had just moved from the Children's Denver NICU to the longer term care area. Randy and I were commuting from our temporary apartment in Boulder, and Grandma and Grandpa ended up in a sad hotel near the hospital. When Grandpa visited Boston, he joined our bitter cold trek to the hospital and our much-appreciated but very tight living quarters.

Now we get the family visit we wanted. Max discovers the fun of window-shopping the pedestrian mall in Grandma's arms, and of glasses-grabbing from a relatively tolerant Grandpa. All the playing and excitement help Max rediscover afternoon snoozes in his stroller. Randy and I do need to send Grandma and Grandpa out for daily errands, but only one is medical -- to replace Max's flagyl after we forget to refrigerate it. (The antibiotic seems to be normalizing his stoma output.) The other errands are happy -- more food for the grill, more syrup for our vegan crepes encore. We are all grateful.

Wed May 23, 2007

An M.D. in Randy's lab recently asked what Max's actual bilirubin numbers are. He's one reason I don't talk about actual numbers.

In grad school, Randy carried around a daily planner -- one of those leather-bound all-in-one calendar/address-book/organizers. The rest of us kidded him about its pretentiousness, on par with the briefcase he carried around in college. The day he left the planner sitting on his desk unattended, we pounced. Rifling through it was just silly fun, until we came to a page that listed his neck size. Stumbling upon this number suddenly made us feel like we had crossed a sacred line, violating his privacy.

Max's actual bilirubin numbers also feel too personal to me, at least while they've been at levels that M.D.s would see as shockingly high. But he continues on his gorgeous trajectory with this week's labs. His bilirubin is down to his lowest numbers on record (back to last June), which is just above the point where the Boston team switches from weekly to monthly labs. This is good timing, because Denver plans to cut back on his labs to let him keep a little more blood.

I quickly forgot Randy's neck size in grad school, and only retained the endearing fact that he carried around a piece of paper documenting it. I hope we'll soon be past graphing Max's liver scores, and will just think back to how miraculously he pulled through these challenges.

Sun May 27, 2007

My first PhD student is a weepy type. (At the university reception when she graduated years ago, she began her prepared speech by thanking me profusely, got too choked up to continue, and sat down. Her parents and siblings seemed to take it okay, but her husband proceeded to point out as each of the subsequent speakers thanked their families.) My eye falls on Jennifer as we sing Happy Birthday to Max at his party this afternoon. The tears in her eyes release me from party-hosting mode and overwhelm me with an appreciation of the moment.

Our swamp cooler conveniently blows out the candle for Max as the cake is presented to him. But he is unimpressed with the vegan banana cream cheese offering, and opts for two breaks from the party to nurse instead. He hangs out pretty happily in the arms of students, family, friends, colleagues, neighbors, and nurses. And on the backs of romping kids. (People continue to collect data and refine theories about the arms he's less happy to be held in. It's not about facial hair. Or not only about facial hair.) Max seems pleased with the celebration, like it's about time we had some excitement around here. Give or take a little weepiness.


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Website copyright 2007 Yuko Munakata (munakata AT colorado.edu).