Wed May 28, 2008

I'd also like to think: First kids with special needs make you weak, then they make you strong.

The real changes in how we're feeling may lie in how few special needs Max has had in his second year. Yes, tomorrow's liver biopsy is hanging over our heads. And the year brought a return of neon vomit, an intestinal surgery, and the bloody scare of our lives. And just as many syringes as his first year. But our sense of this time has been shaped more by:

• 2 moments of deeply understanding the bumper-sticker pride that parents take in their kids' accomplishments -- as we watched Max discover that he could wriggle himself and later walk wherever he pleases.
• 3 momentous stairs.
• 7 regular toddler stitches.
• 0 kitty cats caught.

• 6 video characters called by name (or by Max's version of the name).
• 12 family members called by name (or by Max's version of the name) -- most recently and exuberantly, "Max!"
• 10 seconds that Speech Therapist Beth suggested waiting to give Max a chance to answer our questions. Now he belts out his responses.
• 2 -- Max's answer to any question beginning, "How many?" We should take video of him being asked how many years old he is. And how many kids he thinks we should have.
• 4 P-A-R-Ks within walking distance where Max swings and slides his afternoons away.

• 1 helicopter arriving outside our house to entertain Max, as far as he was concerned.
• 2 trucks obtained through an afternoon at the Denver Auto Show. Worth it.
• 1 plane obtained through a day without Dada. Probably worth it.
• 2 middle fingers that Max curls down when he flies his hand around like a plane. He will fly anything, but his hand seems like his most resourceful option. When I tried to demonstrate the complex finger arrangement that he makes as he whooshes, Randy pointed out that this is the sign for plane.

• 7 days of strolls on the Seine -- dreamed about, taken, and still dreamed about.
• 12 months in Berkeley contemplated and happily postponed.

• 1 inactivation from the transplant list.
• 356 nights not spent in the hospital.
• Pretty much all of them -- the number of waking hours that Max enjoys untethered, compared to 0-4 hours earlier in the year.
• 55% of calories from TPN, compared to 80% a year ago.
• 0 line infections.

• 74 people registered to contribute their knowledge to the short gut wiki.
• 2,806 edits of the wiki pages.
• 111,642 views of the wiki pages.
• Top 5 -- the ranking of google links that now provide life-saving information about Omegaven for searches on TPN, liver disease, and short bowel syndrome. There are still more families to reach, so the google campaign to save babies' lives continues.
• 0 word from Oprah.

• 1 year free from nesting-instinct renovations.

• 26 alphabet tool cards that Max says "Dada" to, despite my efforts to convince him that Mama also knows how to use a hammer and extension cord, and Dada almost certainly doesn't know how use an inshave.
• Hundreds of rocks thrown into reservoirs, creeks, and ponds.
• About a dozen tissues stacked on a table by Max during the worst of my spring allergies. He then lugged over a jumbo teddy bear from my childhood, put the bear's face into the stack, and made nose-blowing sounds, several tissues' worth.

• 1 bride declaring Max her best dance partner of the night.
• 2 awkward swing dancers using Max as their excuse.

• 1 quilted photo album.

• 50,000 people to thank for another amazing year, with Max making his mama and dada younger and stronger.

Thu May 29, 2008

The day begins with a disturbing debate. The ultrasound technician and the doctor performing the liver biopsy can't agree on where to make the incision. Dr. Kramer wants to go in low, but the technician points to Max's kidney on the ultrasound image, arguing that there is too much risk of hitting it through that route. She wants him to go in higher, but he thinks the smaller volume of liver there will make it difficult to get a sufficient sample. They mark Max's right torso with a black marker, erasing and re-marking as they debate. Another doctor gets called in. She agrees with the technician, so the final mark gets placed high.

Max uses his truck to play peekaboo as the anesthesia is injected into his broviac, a procedure we are witnessing for the first time. He lifts and lowers the hard, heavy truck over his face. The anesthesiologist suggests this might not be the best activity at the moment. As the anesthesia kicks in, Max lets out one cry, two cries, three cries, and then is out, Hollywood-style. We grab the truck just as he goes under. It is 9:55 am.

We're called into the consultation room at 10:15, with our bagels and donuts in hand after hunkering down for a longer wait. Dr. Kramer says that the procedure went well, although it took three tries to get the sample size they wanted.

We're taken to see Max in the recovery room at 10:30. I later suggest to the nurse that handling kids in these high-volatility states seems like one of the hardest jobs in the hospital. She says it varies -- some kids wake up laughing and are a breeze. Max has never woken from surgery laughing. Today, as usual, he is screaming. We try to decipher whether he is in pain, agitated from the anesthesia, or just ready for a nap. He blows through 2 doses of morphine, which reduce his screams to a low moan that suggest pain. We give him Tylenol. By 11:30, he is calm in Dada's arms.

We're instructed to keep Max on his righthand side for 4 hours, to keep pressure on the area where the biopsy was taken. Most of the first hour is lost to flailing. As we head to our room, we envision naps for all of us (Randy and I are struggling on a total of 7 hours sleep between the two of us last night), with Max compliantly lying on his right.

But Max has no interest in lying on his right, or even in napping. We give up at the 4 hour mark, when Max has his first hematocrit check to assess for internal bleeding. It is 3 points lower than his labs from two days ago, but this level is still within the normal range and is viewed as an expected drop. The second check will be in 6 hours. We're pretty sure what it will say. Once we give up on the right side pressure idea, Max spends the next 5 hours running around the long expanses of the hospital. Randy and I alternate naps and trying to keep up with him. Someone is certainly younger and stronger.

The 8 pm labs come back at 8:45, rock solid. Max has just fallen asleep, at long last. He transitions easily from Randy's arms to his stroller, to his carseat for our drive home, and into his crib. The inpatient rooms at the fancy new hospital are as gorgeous as everyone said. But nothing feels as luxurious as sleeping in our bed.

We can finally stop not thinking about the biopsy -- at least the procedural part of it. We may get results back tomorrow.

Fri May 30, 2008

When: Sunday, June 8, 3-6 pm

How: With things that go. ABSOLUTELY NO GIFTS. But please wear something -- a shirt, a hat, a piece of jewelry -- that shows a vehicle of any kind. Trucks, planes, helicopters, boats, and motorcycles are Max's current favorites, but he has never met a vehicle he didn't like. If you can't find an item of clothing, feel free to just print or cut out an image from a magazine. If you think we are raising our son too narrowly, feel free to expand your options from vehicles to tools. If you think Max needs to broaden his interests further still, feel free to push the envelope with something from the animal category. (We recommend this last approach for people who aren't sure whether they want any attention from Max.)

Why: Max is TWO! (Just ask him.)

And, the preliminary news on his liver biopsy is reassuring. It shows two improvements relative to his pre-Omegaven biopsies: 1) no cholestasis (reduction in bile flow), which is consistent with his normal bilirubin levels, and 2) no inflammation (which contributes to cholestasis and other liver problems). His liver still shows mild scarring and cellular ballooning, which we understand have remained in other patients as well. These markers haven't been compared to Max's earlier biopsies yet, but it sounds like they have likely not worsened, and have possibly improved. We'll know more after other experts weigh in next week. No theories have been offered as to why his enzymes are elevated, except for our correlated hematocrit-enzymes speculation, which hasn't exactly been embraced by the doctors we've talked to. Most importantly, there is no sense of a need to rush to Pittsburgh.

Where: Our home.

We'll provide drinks, snacks, and birthday cake. Any updates to the plan will be posted here.

Sat May 31, 2008

That was Randy's response when I gave him the biopsy run-down from Dr. Soden yesterday. As in, "We went through all that just to confirm that Max is doing well and to end up without any answers to the enzymes puzzle or plans for changing treatment?"

He's not the only one who's unimpressed. The single side effect that Max seems to be showing is a more strongly reinforced idea that naps should be skipped to maximize time to run around. We swapped out his bandage yesterday and saw only the tiniest dot of a scab.

Another short gut mom emailed me yesterday to say how relieved she was that we came home the night of the procedure. Her son bled significantly and was very unstable from the blood loss after his liver biopsy.

We're still waiting for the detailed report on Max's, but by and large, yes, I think that's it. I'll take it.

Sun Jun 1, 2008

An inevitable consequence of our human desire to share seems to be that we will turn to comparing what we are sharing.

Randy and I faced the consequences of comparison a month ago, during a play-date with a boy about Max's age. When we walked into the house and saw what Ryan was playing with, I exclaimed "truck!" just like I would with Max. Ryan corrected me with "yellow digger." He moved on to discussing more advanced topics from there.

That same day, Austin's mom told me that she had recently expressed frustration about Austin's progress with g-tube feeds compared to Max's. We could just as easily think that the incremental progress that Max is making, as much as it thrills us now, will turn out to be irrelevant. Both of our boys may ultimately need intestinal transplants, in which case what will matter is allergies and oral aversions -- issues that Max is struggling with but Austin is not.

Austin's mom picked a good person to express her frustration to. Ed Barksdale responded with his sage advice to put on blinders when you need them. Each of our kids will take a unique path.

Max will say "yellow digger" someday. He will find his own happiness, his own ways of sharing just for the joy of sharing -- regardless of whether he outgrows his allergies or beats anyone else, whatever that might mean.

Mon Jun 2, 2008

He isn't indiscriminate about all things Ollie. He ignores his baby brother, Mason, along with my commentary about how Ollie is a few months older than Max, and Mason will be a few months older than Max's baby brother.

When I try to lure Max from their back yard by asking if he wants to help me hand out more invitations, he signs "sleep" and points to the ground, like he wants to camp out here.

We'll try more invitations tomorrow.

Tue Jun 3, 2008

Wed Jun 4, 2008

Thu Jun 5, 2008

He sits patiently in his stroller until we deliver this afternoon's first invitation. Then he jumps out to play with the associated kids and dogs. When it's time to move on, he doesn't want to get back in the stroller. Nor does he want to hold my hand for a directed walk.

But then he brings his fists together repeatedly -- the sign for "chase," which he learned earlier this week. Now it's all he talks about. So I flee to the next house, with Max in close pursuit. His maniacal squeal tells me just how close. He catches me when I stop to drop off an invitation, then brings his fists together again. This is how we make our way, rather efficiently, around the block -- even past Ollie's house.

Fri Jun 6, 2008

Sat Jun 7, 2008

Sun Jun 8, 2008

Max points to each button upon waking from his nap. When I move away from his crib, he gestures for me to come back so he can fiddle with the dump truck, the tractor, the bicycle. I've never felt so cool. Randy presents himself next, with a team shirt featuring Wave Theory, Grandpa's old boat. Max gives an appreciative "ahbow" (sailboat).

He is still going strong when the first guests arrive. He devotes careful attention to the digger on Andres' shirt and the wagon (but not the horse) on Lucia's shirt, and especially to the chunky car around their mom's neck. He even glances at grad student Katye's subtle rocket ship earring.

But he loses some of his vehicular focus as the kids stream in. Dr. Wendy's train placard doesn't get the attention it deserves -- which may be for the best, since Kate's baby cousin Kai commandeers it. Max doesn't notice the wardrobe malfunctions, like when Ryan refuses to let his mom wear his truck around her neck.

Amid the chaos, Max manages to accommodate our individual party styles. With Dada, he hangs out in the center of the action -- bubble-blowing, ball-kicking, hot-tub playing, in a throng of kids. He pulls me to the periphery -- to the side of our yard for a trekking adventure for two, then out front for a private goodbye to friend Ben and family. To our foyer for quieter conversations.

Cousin Corrie finger-whistles to quiet the commotion, so we can sing Happy Birthday. Max is beaming. It's not the cake, which he shows no interest in, once he has picked off the vehicles. (So much for our heated debate yesterday about whether he could tolerate the soy in the vegan chocolate offering.) It's not the rounds of clapping that follow the singing and candle-blowing -- he beams even more to these, but he is beaming before them, too.

I am reminded of our colleague Jon's fortieth birthday bash in Pittsburgh years ago, when his friends gave perfect toast after perfect toast -- witty, poignant, spot-on. The rest of us couldn't imagine our friends pulling off anything like that. I think of Jon each day that Max plays with his Christmas lights and alphabet tool cards.

Now I will think of our grad students whenever Max plays with his brilliant contact-paper boom truck, of his friends Max and Henry when he plays with their construction-paper car, and of Great Aunt Jeanie when he plays with her M-A-X train. Whenever Max plays with any of the dozens of trucks that we discover around the house after the party, we will think of all the friends who came to celebrate with us today. Friends in fabulous vehicle outfits -- perfect toasts to Max. They are why I think Max is beaming.

After Ollie and the last celebrants depart, Max and I watch Dada untie the jumbo helium truck balloon from our front railing. As Randy and I clean up and prepare Max's supplies, Max sits on his quilt from Aunt Junko, flipping through his photo album from Nana.

I don't want this day to end. I want to keep savoring it.

Party photos by Jane Van Hall

Mon Jun 9, 2008

Max sleeps in after his big shindig. I have been awake for 20 minutes of morning-after savoring. Dr. Soden calls.

The full biopsy report is not as optimistic as the preliminary one.

Max's biopsy 20 months ago showed mild fibrosis (stage 2-3 of 6). Now it shows a worsening to stage 4. Transplant is raised again.

I search for a positive spin.

What about the fact that the biopsies were taken from different parts of the liver? Dr. Soden says that the worsening is definitive -- even though biopsies come from random sampling, they are thought to accurately represent what is happening throughout the liver.

What about the fact that the biopsy was taken 4 months before we started Omegaven, and Max's bilirubin was high and increasing during this window? Dr. Soden is the one to highlight that the worsening to stage 4 could have all happened in that period. This would mean that our preliminary take is right -- that Omegaven has stabilized (or even improved) Max's condition.

But his liver remains firm and his spleen remains big. His ALT/AST have been rising and his platelets have dropped. All indicate some form of continued struggle. We don't know whether this means that the liver is suffering further injury. We don't know what kind of damage can happen in the absence of active inflammation or cholestasis.

The biopsy results will be sent to Pittsburgh and Boston. We will look into other ways to try to reduce demand on the liver (e.g., cycling proteins in Max's TPN instead of giving them daily, and trying mucomyst, an antioxidant that has shown good effects on the liver in case studies). We will continue to watch Max's labs closely. We will hope that the delays in getting Max to Boston caused this worsening, and not anything since.

Thu Jun 12, 2008

At Max's party, I approached the Paris skeptic to thank him for one of the two pieces of advice he gave just before Max was born.

His first tip was to give your kid drugs. As in, when they are screaming in pain from teething, don't fret about giving them Tylenol. I guess the same logic applies to major intestinal surgeries and fentanyl.

But it's the other piece of advice I want to thank him for -- to work your kid hard. In recent weeks, Max has been napping fitfully, or skipping his luxurious mid-day snooze altogether. We've been worried he was giving it up for good. Then we remembered Dave's advice. So we've been running Max hard -- until we're panting, and even though he is still eagerly signing for "chase," he just can't do it anymore. We're also working in fetch-style and circle games where he does most of the running. Ever since, we have been back to hours of mid-day tranquility and a totally happy kid through bedtime.

Dave didn't remember what advice he had offered. He explained that he gives a lot of it. We're grateful -- but still glad we ignored what he had to say about Paris.

Fri Jun 13, 2008

Sat Jun 14, 2008

We make this discovery at a local Touch-a-Truck event this morning. We arrive to a cacophony of kids and horn-honking and a dramatic helicopter lift-off -- and fire trucks, dump trucks, hauling trucks, construction trucks, and a milk truck. It's too much. Max convinces us to head home after 10 minutes.

No more input has come in on the liver biopsy. Left to his own devices, Randy has settled into the most optimistic possible spin: that all of the worsening before last month's biopsy happened between September 2006 (when the previous biopsy was taken) and January 2007 (when Max started Omegaven), and that he has been stable or improving since.

Too much optimism comes with the risk of overlooking serious problems. Max's condition might be declining despite all appearances to the contrary. But in trying to articulate this possibility this afternoon, I realize how implausible it sounds. Max's liver went from class 0 to class 2-3 fibrosis in his first 3 months on TPN. He and his liver only got worse, in visibly apparent ways, over the next 4 months. Yes, his fibrosis could have stayed steady despite his struggles during those grueling months, and then progressed to class 4 only after he began thriving on Omegaven. But the optimistic alternative seems much more plausible.

There can be such a thing as too many trucks. And too much optimism. But we think the truck threshold is the only one we've crossed.

Sun Jun 15, 2008

He recently announced, "I'm an ideal father." He explained that he had read an article about fatherhood, and the importance of sharing experiences with children over buying things for them.

I asked, "What about all the things you keep buying for Max?" Even the other kids know. Max and Ben first bonded over chasing after Randy's remote-control airplane a few weeks ago. Afterward, Ben's mom suggested that his dad might get an airplane like that for him. Ben excitedly replied, "Maybe Randy will give me one."

Randy declared his gifts to be fine, as long as he and Max have shared experiences with them.

He may not be humble, but Max and I couldn't agree more with Dada's reflections on himself as a father. This afternoon, the boys set off to explore Boulder's vast network of bike trails, parks, and creeks -- a shared experience enjoyed at least as much as the train set Dada brought home this morning.

Tue Jun 17, 2008

We do celebrate Max every day. I suppose this might get a little confusing.

Wed Jun 18, 2008

But he's getting mixed messages. Almost every night, he reads "Hello Baby!" with Dada, and checks out the human baby shown growing in the mama. Almost as often, he watches his latest favorite video. He sees a boy eagerly anticipating his new brother, who turns out to be Stuart Little, a mouse.

So whenever we talk about the arrival of mama's baby, Max's brother, I wonder what he imagines.

Randy thinks my watermelon of a lap would never inspire thoughts of anything as small as a mouse. If he's right, the three of us may be equally prepared for what's to come -- a boy, not a mouse, but otherwise an exquisite mystery.

Fri Jun 20, 2008

Sun Jun 22, 2008

Ollie's parents throw a block party this afternoon. I hadn't realized these were a midwestern phenomenon, but those of us who grew up there seem to feel a certain nostalgia for such gatherings, while those who didn't (like Randy) show up as novices.

A couple dozen kids and dogs run around our blocked off street while we get to know folks -- a neurologist, an archeologist, a physical therapist, a physicist. I'm a little distracted by trying to watch how Max handles himself in a posse of 2-year-old boys. Mostly, they play with their trucks. I'm tempted to run over when the oldest one takes Max's dump truck from him, but I follow Max's mellow lead instead. Another member of the posse tags along when Max returns home for a milk break, and again when we take Max for tuck-in a couple hours later. We can't get the kid out of our house until we tell him he can come back tomorrow.

There could be Camelot potential in our own backyard.

Mon Jun 23, 2008

We later read that we should check for amnesia or confusion.

When Randy and I arrive, Max is calm in Kate's lap, his bump reduced considerably by Starbucks ice. He points to the play area to show us where the incident happened. (His stroller tipped over when he was standing near it, and he startled and fell backward.) I ask how Nana is coming to see him tomorrow. He pumps his fist up and down to sign for "car". I ask how Aunt Katie is arriving. He folds his middle fingers down to sign for "plane," and flies his hand around.

Then he runs around the mall for the next half hour. Walking or crawling is not unsteady, another thing Your Child's Health says to check for.

Check, check, check, check. Once again, Max is reassuring us that all is well.

Fri Jun 27, 2008

He has been skipping his nap the last few days, to maximize his time making music with Nana and her chimes and singing bowls, chasing after Aunt Katie, and throwing sticks into the river on an O'Reilly outing to Rocky Mountain National Park.

I've been finishing a grant proposal under looming deadline. I at least get to witness Max offering his first birthday wish for someone other than himself, filling in Nana's name when we sing (and point) to her out at dinner. And I get to see him show off his throwing arm for his great-grand-Mautch and her visiting sister, 186 years between them, as he aggressively rearranges rocks in their courtyard fountain.

We should both be catching up on sleep soon.

Sat Jun 28, 2008

That's the motto we seem to be passing down to Max about summer weekends. We head to Sophie's birthday party in the park this afternoon. (Her dad was a postdoc in Randy's lab, and just moved into a faculty position and my old office at the University of Denver. Her mom is the vegan who helped us through my months without milk, eggs, wheat, soy, nuts, or corn).

Max refuses to present Sophie with her photo taken at his birthday celebration. He entertains himself for much of the party by throwing rocks into the creek. His stance on the primary-purpose issue, at least when he's near a body of water, seems pretty clear.

Sun Jun 29, 2008

While tucking Max in, Randy asks if he is ready for a little brother. Max gives the question careful consideration. Then he brings his finger to the tip of his nose, and wiggles it back and forth. This is the sign for mouse. Randy can't believe it. He gives Max a second chance. "Do you think your little brother is going to be a mouse, or do you think your little brother is going to be a baby boy, like you were?" Max listens attentively to his options. He is unswayed by Randy's leading question. He brings his finger back to his nose, and gives a conclusive wiggle.

Tue Ju1 1, 2008

While we're out for dinner celebrating my grant submission, Randy asks Max what's in my belly. Max rocks his arms as if cradling something -- the sign for "baby." Randy squeals his approval. Then Max slowly brings his finger to his nose, watches Randy closely, and wiggles it. Randy howls in disbelief. He urges Max to say what he really thinks is in there. Max brings his fingers out from the sides of his mouth, like whiskers -- the sign for "cat."

Yes, I'm big enough to fit all three. But as Randy issues more protests, Max flashes a satisfied smile. He may very well know what's in my belly. He certainly knows how to get inside Randy's head.

Thu Ju1 3, 2008

Nurse Gail has been part of our lives since we first brought Max home from the hospital. She continued coming to our house for blood draws every 3 weeks even after she cut back to part-time with our home health care company, but now she is leaving it for good. We'd rather draw the labs ourselves than try to find a nurse we love as much as Gail. Many short gut families seem to end up doing this for one reason or another.

The procedure is not so different from what we do each day with the broviac line to Max's heart -- scrub it with alcohol, flush in some saline at the start and end of the procedure, and finish with a heparin flush to prevent his blood from clotting in the line. In between saline flushes, we draw his blood out from the line. The first 3 cc gets discarded, because it is not a representative sample. (Nurse Gail used to return this blood to Max after finishing his lab draws, but now that his hematocrit has been normal all year, returning this "waste" is not worth the risk of infection.) The rest of the blood draw goes into vials, which go into a cooler, which gets picked up by a courier and driven to Children's Hospital for testing. Max usually plays with trucks or planes through the painless 5 minutes.

There weren't any surprises in last week's labs. Liver enzymes are slightly better, but still elevated and still mysteriously tracking hematocrit. Randy and I are the only ones left wondering whether the correlation might mean something -- it wasn't viewed as worth discussing among the Denver doctors who reviewed Max's biopsy. Still, his doctor agrees for us to start drawing labs every 4 weeks instead of every 3, which we hope will reduce any taxing of the liver that comes from increased red blood cell production following these draws. His labs are stable enough that 4 weeks is often enough from the doctor's perspective.

Fri Ju1 4, 2008

Mon Ju1 7, 2008

I don't think I've ever been louder than him, even through the volatility of early pregnancy hormones. But as of today, I'm officially bigger. Randy may be the fittest he's ever been, thanks to his afternoons with Max on Boulder's network of bike trails. A stop on yesterday's ride featured geese gathering around Max to watch him throw rocks into a pond. Meanwhile, I can't get into the car to drive to work this morning -- not enough room between the garage wall and the car door. Randy slips in and backs the car out for me.

Tue Ju1 8, 2008

The day starts normally enough. I do Max's morning cares, flush his distal bowel with saline, and disconnect him from his pumps. When Kate arrives, we give Max a bath. I wake Randy to change Max's broviac dressing. As I'm heading out the door for school, Randy calls me back.

I walk into Max's room to see his broviac - the permanent IV line to his heart -- dangling from Randy's hand, completely detached from Max. I can't make any sense of the scene, or of what Randy is saying: the line is completely out. It's like seeing Randy holding one of Max's limbs, saying it has come off.

So it's hard to believe when the surgical nurse calls us on our way to the hospital, saying we should head back home. Surgery can't happen until evening.

As urgent as most events are with Max's lifeline, they become surreally non-urgent once it's fully out. There was no bleeding or apparent pain. The only question is how long Max can last without his IV nutrition and hydration, and without food since he can't have any until after surgery. No one knows.

We fantasize about the forbidden activities that Max might engage in during his few hours without a broviac, like swimming. But the reality is that Max naps while Randy and I meet with our lab groups. We come home to him waking, then head to the hospital, again.

The surgery white board lists Max's surgery for 5:30-6:30. But surgery gets pushed back an hour. Two hours. The 4.5 hours we ultimately wait are thankfully spent mostly with Max rolling trucks and trains around the play area. A few of the surgeries on the board are listed for 4 hours long, and one is listed for 8 hours -- much harder waits.

When Dr. Partrick comes to discuss the procedure, he expresses surprise that we need it, given how long the broviac has been in (1.5 years), which should make it very secure given how the skin grows into a cuff near the end, and how well we've protected it. This triggers my primary fear about this episode: We have no idea how it happened.

Dr. Partrick will place a new broviac in Max's chest. Max's friends have their broviacs there, but his prior broviacs have all been in one thigh or the other, the location Dr. Partrick prefers for kids when they are smaller. He asks whether we have any preferences for the location of the exit site from Max's skin. We request that it be under the shirt line, but otherwise far up from the rest of Max's action, to reduce infection risk from g-tube or ostomy leaks.

Randy comforts Max during the anesthesia. I'm not allowed in for this procedure, due to fear that the gasses might cause a pregnant mom to pass out. Randy recounts for me how Max fought the mask for several seconds, and then was out. The last time was easier, when anesthesia was given through the broviac, with no mask to fight, and I was allowed in. I catch myself in the middle of asking why we didn't administer anesthesia through the broviac this time.

Twenty minutes into the surgery, Dr. Partrick calls the phone in the waiting area. He wants clarification on my parting words, conveyed to him by the nurse, to put the exit site on Max's right. I explain that our last-minute request comes from recommendations by other parents I have just spoken with -- as a way to get further distance from Max's action, which is on his left. Dr. Partrick agrees, with a hint of amused appreciation for the power of the parent network.

Forty minutes later, Dr. Partrick comes out to say that all went smoothly. Fifteen minutes after that, we're taken to Max in the recovery room. He is agitated as usual, but we can now recognize that it is just agitation -- treated with a dose of Tylenol, no morphine, a lot of holding and soothing, and checking out of the hospital as soon as possible.

Minus the Tylenol, works for us, too.

Wed Ju1 9, 2008

The main cons with this location seem to be the risk of contamination from the g-tube or ostomy (but the tip from Christian's parents to lateralize the exit site should help with that) and needing to learn how to protect a new area -- keeping it dry during baths, keeping Max's hands away from it during procedures. We should have time to develop this mastery before the baby comes.

Max's chest gives us a bigger, flatter, and more stable surface for affixing the line and protective dressing. The thigh flexes a lot. We now suspect that this is why we've had an unusual number of broviac breaks, with its unusual placement. The flexing also meant needing plenty of tape to keep the dressing secure. Maybe the flexing even contributed in some way to the broviac coming out.

Now it's easier to secure the broviac under the protective dressing and away from yanking hands, and to tuck everything away under Max's shirt. We normally have to keep him in pants to prevent him from itching at his leg, but with no more broviac (and no more fortress of dressings and tape) there, no more itching. He runs around the house pantless.

Best of all, we no longer have to worry about Max's legs getting wet. We celebrate with a late afternoon outing up the canyon, where Max wades in water for the first time.

He doesn't show any awareness of why things have changed -- no interest in his new broviac, his old broviac site, or the incision created for the surgery. But playing in the water and with his chunky legs flying free, he seems downright giddy about how things have changed -- though we may be projecting.

Thu Ju1 10, 2008

We couldn't wait for Max to say our names for the first time. Then I couldn't wait for him to move on from his incessant "dada" phase. When he finally turned to "mama", I felt like a hero.

As Randy replenishes the Omegaven tonight, Max calls my name. His eyes are closed and he doesn't stir. Hours later, Neko meows in our bed. In his sleep, Randy replies, "How about 'Dada'?" Neko meows again. Randy asks, "Don't you want to say 'Dada'?"

Awake or asleep, there's still nothing quite like hearing Max call for us.

Sun Ju1 13, 2008

Max plays in Boulder Creek, and hears about Grandpa's sailing adventures. We wonder how we'll convince him to leave the water, but this time turns out to be easier than most, since he's eager to hold Grandpa's hand even if it means moving on.

At the hardware store, Max rearranges the toy vehicles. Guess what, Max? Smack-smack rides motorcycles too. (A double lip smack is Max's puzzling but reliable way of calling for and referring to Grandpa.) When we interrupt his endless rearranging project, Max refuses to let go of a shiny flatbed truck. Grandpa lifts him up to the cashier, who scans the bar code without needing to unclench Max's fist. We escape from a trip to the remote control store (also surprisingly entertaining, at least in the company I'm keeping) with only repair kits for Max's existing toys.

Grandpa slips out while Max and I are napping. He leaves a helicopter as a memento of his 27 hours in Boulder. No, he's never flown the real thing. But his legacy of vehicle love is clearly thriving.

Tue Ju1 15, 2008

He continues to grow well, staying beautifully on track at the 50th percentile for weight, despite decreases in his TPN calories.

We'll make two of the four changes we propose to his doctor: reducing his tethered window from 14 hours to 13 (just to increase flexibility in his schedule on these longer summer days, with the same volume and calories as before), and adding ranitidine (Zantac) back into his TPN. We had cut this stomach acid suppressor to try to improve Max's liver enzymes, but it didn't seem to have any effect. Adding it back in may decrease Max's stoma output, allowing us to increase feeds (which we have had to hold steady recently) and to hopefully decrease TPN again down the road. Dr. Soden also wonders whether ranitidine might increase Max's interest in eating, in case his oral aversion is tied to acid reflux.

Two changes we won't make: trying mucomyst (since no one is eager to use an experimental drug on top of Omegaven, and Max's liver may not need additional help if the optimistic spin on his biopsy is correct) and cutting heparin from the TPN. We flush Max's broviac with heparin at the start of his untethered window, to prevent his blood from clotting in the line. We also add heparin to his TPN. We thought everyone did these things. But we recently learned on one of our mailing lists that many families do not add heparin to the TPN. Their argument is that it's better to avoid it if possible (e.g., due to the risk of developing antibodies), and that heparin should be unnecessary in the TPN mix, since blood should not be at risk of clotting when TPN is infusing. Max's team points out that TPN can stop infusing unexpectedly, when pumps stop pumping (due to malfunction or when air is detected in the line) or when a broviac breaks (so that it needs to be clamped and repaired, without any opportunity to flush it with heparin). We have experienced each of these events multiple times. Heparin in the TPN may have prevented the blood from clotting, allowing us to save the line and avoid surgery. For Max's team, these benefits outweigh the risks, which they view as negligible.

There's one problem with the kid-friendly hospital -- the stark contrast between running from toy to toy and kid to kid in the sunlit waiting areas, and sitting through detailed medical talk in the confines of an examination room. Max protests through most of the latter. But it's the good stuff that he starts and ends with, and that he seems to remember about this place.

Wed Ju1 16, 2008

Thu Ju1 17, 2008

OT Judy told us earlier this month that she couldn't do anything more for Max's oral aversion. She tried to ease the blow by using the classic break-up line -- the problem is her, not Max. He's more likely to attend to what other kids are doing now than to take instructions from a 50-year-old. She recommended that we switch to peer group feeding therapy. Those sessions start next month.

So we have been pleasantly surprised at Max's renewed interest in food this week: bread, carrots, cherries, jello, chips, and noodles. He asks for it, brings it to his mouth, and spends a lot of time tasting. He chews and ingests a little. The main trick seems to have been for us to stop trying. We don't focus on getting him to eat, we just eat while hanging out with him.

This evening's success is angel hair pasta, which Max happily plays with and nibbles on. He starts scratching at his neck. We wonder whether it is irritated by dribbles of water, from the glass of (mostly) ice he has been sipping from. As Max continues to munch, and to scratch, Randy realizes that he used milk to moisten the leftover pasta before warming it. He gets a Benadryl strip into Max's mouth just as welts start to appear on his face and chest. Max spits most of it up.

He keeps itching, and he coughs a bit, but he is clearly breathing and just wants to play. So I distract him with our latest favorite activity while Randy gets another Benadryl strip in his mouth. Max signs and says and gestures the pieces of a story, while I elaborate. As usual, his story involves Stuart being chased by a cat (today's twist is that the cat is chased by Curious George, who is chased by the man in the yellow hat); Stuart escapes via truck, boat, car, bike, plane, and train. Max's welts have subsided by the end of his story.

Now we know. Max is still allergic to milk. His reaction to a tiny amount of it can be easily controlled. His renewed interest in eating is well worth the need for our renewed vigilance about allergens.

Fri Ju1 18, 2008

That tree will get moved. Our little landscaping idea has ballooned into an undertaking that requires an engineering permit (which came through yesterday), a loan (which we sign off on this afternoon), and the breaking of ground (who knows when).

The plan now is to cut me out of the loop. Randy can handle the details and bills that would consume me, and he can keep reminding me that he has never been wrong with his home improvement projects. I'll focus on how kid-friendly the back yard will be. I hope that when all is said and done, the deer still agrees.

Sat Ju1 19, 2008

We head back to the creek with friends Dick and Jan this afternoon, then struggle as usual to convince Max to leave it, for dinner. We had originally considered letting him escape the 100 degree heat in the baby pool at their club, following the swimming and bathing wiki tips from other families who have paved the way. Then we saw the precaution about not immersing in water for a month after broviac surgery. Max's surgical nurse confirmed that we should wait at least another 10 days, so that his skin can grow into and secure the broviac cuff. We're grateful for the creek. Wading should make for easy waiting.

Sun Ju1 20, 2008

He's in good company. Kids are notoriously poor deceivers -- a phenomenon we refer to as "There is no pie!", after one of my favorite examples, from Descartes' Baby. A little girl was instructed repeatedly to not tell her uncle about the surprise pie prepared for his birthday. When the uncle arrived, the girl blurted out, "There is no pie!"

Max has been calling my name, then signing "car." This is my cue to come play hide-and-seek. Max hides his car in front of me, then signals for me to cover my eyes. I retrieve the car instead, explain that I saw him hide it, and suggest that he hide it after I cover my eyes. I cover my eyes and count to 10. I open them to see Max grinning in anticipation. He stands by the couch, right next to the cushion that he normally slips the car under. His masterful deceit comes in occasionally pointing me toward other locations to search. But more often than not, he can't help but lift the cushion to show me the car. This morning, he pulls the car from under the cushion, then points to other locations for me to search.

Max may have trouble separating reality (where the car is located) from beliefs (what I know about where the car is located), as Paul Bloom argues. These skills should develop over the next few years, allowing Max to improve his hide-and-seek game. I hope good liars are as adorable as bad ones.

Fri Ju1 25, 2008

Not that he needed to, but Max has made clear that he can skip his baby brother's delivery.

Sat Ju1 26, 2008

We still have a little time. (It has always felt to me like only a little time before baby arrives, but like a lot of time to Randy. Now it feels like only a little time to both of us.)

We'll take whatever ideas we can get. This morning, I ask Max what we should call his little brother. He brings his palm to his ear to sign for "phone." Yes, calling his little brother.

Sun Ju1 27, 2008

The steri-strips from Max's broviac surgery fall off today. They reveal a tiny mark where the incision was made to insert his new IV line -- just the faintest trace of our biggest scare of the year. The more obvious reminder is Max's new broviac location, which we continue to appreciate in shorts and wading on sweltering afternoons.

Wed Ju1 30, 2008

This fact brings me to my knees each time I confront it. This week, Austin gets rushed to the ER after a line full of air gets pumped to his heart. He could go into cardiac arrest. His mom is one of the most vigilant parents we know. If she could forget to prime the TPN through the tubing, so could any of us.

Last month, another child was overdosed with 100 times the normal amount of heparin, when a parent handed a home health care nurse a vial of high-concentration heparin (which gets injected into the IV bag and pumped gradually into the bloodstream) instead of low-concentration heparin (which goes directly into the IV) -- the same, high-profile mix-up that happened in the hospital with Dennis Quaid's twins.

Last year, Max's heart pumped his blood out into his crib for several hours, after I failed to tighten the y-splitter on his tubing sufficiently.

I can't get enough of the love and light of our lives, the sweetest bear, our Squiggles. When his lip trembles at the sight of kids swinging bats at a pinata this evening, I end up closer to tears than him. I want to swoop him up in my arms and erase the violent images from his mind. (It's a pinata of a car, after all.)

Yet I committed the error that caused him to hemorrhage overnight.

Our kids are fine now. We're learning tricks to prevent these incidents. Many parents have reassured us about how they survived similar horrors years ago. Their kids are fine too, some of them now in their teens.

Knowing this helps me get up off my knees.

Thu Ju1 31, 2008

I fold the snap-up top that Max wore constantly during his first months, since it allowed easy access to his sites and accommodated his tubing. I show him the snap-up footed pajamas he wore during his Learjet flights to and from Pittsburgh. Some outfits are marked "NICU" -- accidentally brought back with us from Max's first homes. Among the bags marked "0-3 months" and "3-6 months" are two that say only, "Don't work." We discover a whole new wardrobe for Max within them. Adorable summer jumpers that got packed up and forgotten back when Max was tethered most of the day. Shorts that would have allowed too much access to the broviac on his leg. T-shirts that Max would have scratched his arms raw in before we got his liver disease and allergies under control. They all work now.

Sorting through these hand-me-downs -- for Max, from Max, for an anticipated mouse -- makes for one mushy mama.

Fri Aug 1, 2008

Sat Aug 2, 2008

She's not the only one to have her name denied through official channels. When my parents submitted my name to the Consulate of Japan, their form was returned with instructions to pick a different name. The problem: the Chinese character for the first part of my name had been dropped from the alphabet. "Quiet, calm, and eternal" -- the intended meaning for my name -- wasn't so eternal after all. (The character eventually made a comeback, getting added back into the alphabet and then selected for a baby born into Japan's royal family a couple years ago. But I'll probably stick with the "relaxed, comfortable, and generous" character that my parents settled on in resubmitting their form.)

We hope these kinds of stories won't be relevant for us again any time soon.

Sun Aug 3, 2008

Mon Aug 4, 2008

Tue Aug 5, 2008

Wed Aug 6, 2008

We settle into a mock dining room and kitchen at the hospital this morning. Two feeding therapists watch from behind 2-way mirrors as Max refuses his food, throws it on the ground, and throws himself down after it. He protests if we try to engage him in anything other than his single-minded goal: flipping and rearranging chairs. (They ARE very cool chairs -- colorful blocks that can be rotated into one of three different configurations.)

The therapists quickly emerge from behind the mirrors. They suggest that Max might benefit more from one-on-one therapy than the peer group sessions they lead. (But his one-on-one therapist directed us to this group.) They indicate that Max is a bit young for their group, which is mainly 3-year-olds. (They knew his age going in, but perhaps wanted to see just how much of a 2-year-old he is.) They indicate that their group, which focuses on allergies, is much more restricted in what they can eat -- rice, fruits, and vegetables. (Max's food diary also includes meats and all manner of wheat products.).

In retrospect, when Randy fingers Max's meltdown as the true reason for him not being welcomed into the group, we wish we could have explained: We were sent to the wrong place when we arrived at the hospital, which led to a long wait, a missed feeding, and Max's transition from giggling and exploring to being done with the place. Max loves to share meals with us, in or out, and is usually really good through them. He wouldn't disrupt group feeding sessions, despite all appearances to the contrary.

But we have no opportunity to revise and resubmit -- aside from waiting until Max is older before trying to join this group again. In the meantime, we can work on eating skills with Speech Therapist Beth, give Max more opportunities to eat with peers, and continue to enjoy meals with him.

Thu Aug 7, 2008

Randy and I have been discussing the benefits of naming our new baby "Max" -- a name we love, a solution to the dilemma of siblings who have different last names having no shared name (this baby will probably be an O'Reilly), easy hand-me-downs of all things personalized, and continued use of max.html without anyone feeling slighted. We've promised ourselves that we won't follow through on the joke.

My student's parents also had good intentions. They planned to pick one of their last names based on gender match -- a girl would get Snyder, a boy would get Schneider. But at the last minute, they panicked about the father running into possible problems when traveling with Hannah or taking her to the doctor. So she's a Snyder-Schneider.

She goes by Snyder.

We'll try not to panic. But it's good to know that things have a way of working out.

Fri Aug 8, 2008

But even without the shirt, he has been in a full-fledged mama phase for the last couple weeks. He calls my name throughout the day -- to show me a truck or a book, to get me to watch his foot-stomping dance, or today, to exchange amused glances as we take in Cameron and Allison's gymnastics performance in their front yard.

I'm told that things will change -- that I'll tire of these constant calls for my attention, and if they should wane, I'll feel no need to break out my vehicles shirt again. That time feels a long ways away.

Mon Aug 11, 2008

When our families moved in together back in Boston, we were trying to save Max from liver failure, and they were navigating Christian's post-transplant teetering between rejection and infection.

Our thriving boys have certainly shown us that - ready or not - things have a way of working out.

Tue Aug 12, 2008

Wed Aug 13, 2008

Thu Aug 14, 2008

I've been told that the best way to prevent allergies in our baby on the way is: 1) to cut everything Max is allergic to from my third-trimester and postnatal diet, 2) to cut only easy-to-cut, common culprits like nuts and shellfish from my third-trimester diet, and to possibly cut additional allergens postnatally, and 3) to not worry about cutting any foods at any point. All of this advice came from the same allergist, across the space of a year.

This afternoon, Max gets his back scraped a dozen times for his second skin test with this allergist. What we learn depends on who you ask. Randy concludes that we can now introduce each of the tested foods into Max's diet, except for bananas. I conclude that we have the go-ahead for oranges, strawberries, and raspberries, with uncertainty about the rest.

We get the green light on the three fruits because Max shows zero reaction to them. (Fruits are often discouraged for short gut kids because sugar can cause dumping, but they should be okay for Max's nibbling.) He shows a +2 skin swelling to banana, indicating a mild allergic reaction. Those results are clear enough.

He also shows zero reaction to avocado, soy milk, and hummus, but we are advised to hold off on those for now, because they are generally allergenic, and Max has shown some reaction to avocado and soy in the past (e.g., a year ago, he tested positive for soy mayonnaise but negative to soy cheese and miso). He shows a +1 skin swelling to the remaining foods, including green beans and cantaloupe. That's why we are advised verbally to hold off on these foods too. But the written report we receive says "can eat" next to each of them. The discrepancy reflects the fact that Max's saline control test, which normally produces no reaction whatsoever, is a bit puffy today. This can happen when the skin is sensitive, making it trickier to decide whether other slight puffs indicate allergies or not.

So he gets blood drawn for follow-up tests. We're asked to wait for those results before trying foods other than the three fruits. If the blood results suggest that we can introduce the more allergenic foods, we're advised to do so in the controlled setting of the hospital.

Blood tests haven't provided clarity in the past. There just seem to be too many gray areas in this field, with each new research study suggesting a different interpretation and course of action. If we want clear-cut answers on Max's allergies, I think we'll have to go with the ones Randy makes up.

Fri Aug 15, 2008

Max has his issues, of course. But they're all medical. Otherwise, he's easy -- easy-going, easy sleeping, easy hanging out with his books and trains. Until last night.

He must have had moments when he wasn't crying or screaming, but they seemed limited to the time we entered his room to check on him (and each time found that everything was fine), to the moment we made motions to leave.

He does the same thing in his crib this afternoon, and ends up skipping his nap altogether. So it's not a fear of the dark.

That's all we know. We're lost. We consult our sleep bible, which reassures us that for a great sleeper like Max, this phase should pass quickly.

We sit through a grueling dinner to welcome Nana tonight, struggling to not rush in to Max. We last for 15 minutes. I rub his back, let him know I can't stay long, reassure him about how much we love him, and sing to him. After I leave, he cries for anther half hour. Just as we're on the verge of our own meltdowns, he finally conks out. Over the next several hours, he wakes twice, crying, but calms himself within minutes.

We're exhausted. If he's trying to give us a glimpse of how we'd handle a difficult kid, I'm not sure we pass.

Sun Aug 17, 2008

He celebrates by welcoming cousin Toshio back from his almost-year abroad. Their excitement at reuniting gets directed toward a lesson on how to jump off rocks and stairs on the pedestrian mall. After studying Toshio's demonstrations, Max pumps his knees and swings his arms - then steps down. Randy and I cheer. Toshio protests, "He's not jumping!"

Plenty more weekends for them to work that out.

Tue Aug 19, 2008

I am wondering how we could possibly think about bringing an intruder into our idyllic lives with Max, how we could disrupt his place in the center of our universe.

I do not cry all night, apologizing to our imminent arrival for not possibly being able to love him as much as I love Max. But I am not nearly so shocked by the thought of a colleague doing exactly that during her second pregnancy.

She shared her story with us over a dinner years ago, her two kids chiming in with wisecracks at their mom's expense.

So I've written down my thoughts. I'll look forward to laughing about them someday, with the love and light of our lives, and the intruder.

Wed Aug 20, 2008

The week before, a colleague claimed that Hollywood depicts pregnant women up to only 7 months. As a result, people are familiar with pregnancy through the cute phase, but not into the grotesque phase. She informed me that I had transitioned into the grotesque phase.

A phase that only a mother could love? When baba arrives in Boulder this afternoon, she can't stop laughing at how huge I am.

Today is the day our baby would arrive if he came when Max did.

So it's surprising how unprepared we are when baba asks what the plan is if I go into labor tonight. We've been gradually getting ready -- carseat, go-bag, schedules of Max's team (which Nurse Gail has also joined) -- but an actual delivery plan is far more concrete than anything we've thought about so far.

We'll see what we have time to come up with.

Thu Aug 21, 2008

Fri Aug 22, 2008

For what it's worth, the blood results suggested allergies to the foods we already knew about (nuts, eggs, milk, and peas), as well as to bananas (consistent with the skin test), and to avocado and soy (inconsistent with the skin test).

The 5 foods we got the green light on were not tested in the blood work. We'll approach the remaining three as if the green light were yellow, mixed with a dose of gray.

Sat Aug 23, 2008

She seems thrilled by how close my due date is. We talk about the mystery that surrounds exactly when and how the baby will arrive, and who he will be. She confesses that this state of wonder, when your baby could arrive at any moment, is the state she'd love to be in perpetually if she could.

It's a beautiful sentiment. But I wonder if she remembers what it's like to be in this state.

For these Olympics, what has amazed me is not only the feats of athleticism, but even just the medalists' abilities to remain standing all the way through the award ceremonies.

And as the moment of meeting our baby approaches, the emotions around Max's early days and surgeries and diagnosis are flooding back.

The stranger has no way to know about this, of course. But I don't divulge back. I'll try to absorb some of what she shared instead.

Sun Aug 24, 2008

Mon Aug 25, 2008

Every morning, baba is suprised to see me still here, still 110%.

The nurse jokes that I might be making the option of staying in a little too appealing. The quarters are tight, but a lot of easy calories are coming through, even if baby has no appreciation of how spectacular the brunch calories were this weekend -- with Dick and Jan and rocks and pond on Saturday, and out on Sunday with visiting friends Ken and Liz and daughters Maddie and Ellie, meeting Max for the first time. Max capitalized on Ken's fascination with his planes to eagerly show off his collection to the group.

Baba's cooking means no end in sight for spectacular calories to be had. But we're hoping another end will be in sight soon -- in time to skip next week's appointment.

Tue Aug 26, 2008

So I couldn't help but test Max by asking him to "Give me two." I was pushing my luck. He gave a firm "No" and played happily with his dee cars.

Wed Aug 27, 2008

Today is the day, from a cognitive control perspective. Jeff Kerr-Layton is delivering, then he's off for 10 days. Nanny Kate is with Max, and Nurse Gail is available. Baba is still in town, Auntie Junko is back from her year abroad, and Auntie Naoko arrives in three days.

Max's broviac dressing is freshly changed, as is the cap on his broviac -- both once-per-week sterile procedures that we are very particular about doing. Laundry is done. Nursery and go-bag are close enough. Work projects are in a reasonable state. Landscaping completion is so far off to not be a consideration.

Still no name. I've wondered if our birth announcement could refer to X X O'Reilly. Not X as an actual name (unless Pittsburgh Kenny makes a more compelling case for this, his favorite option), but as a placeholder. Or maybe just X X X. Randy worries that this email would get blocked by spam filters. We're getting more comfortable with the idea of seeing what we settle on when we meet our baby.

Despite my apprehensions, I feel ready.

Unfortunately, either my cognitive control has deteriorated with pregnancy, or it isn't playing much role in when I go into labor.

Thu Aug 28, 2008

Karen Wynn clarified yesterday why Max's apparent number precocity was ambiguous. He could have been mapping numbers to quantities (saying "dee" about the whole set of cars) months before most kids can, or he could have just been rote counting each car as he added it to the set (saying "dee" about the third car). The "Give me three" test distinguishes these possibilities. I told her I couldn't wait for my next testing opportunity.

It almost happened last evening. I asked Max to give me two trains. He gave me a blank look, then watched my face closely as he picked up one train, handed it to me, then picked up a second train, and handed it to me. As he started to pick up a third train, I said "Two trains, thanks Max!"

Randy's data was equally contaminated. When he joined us, I asked Max if he could give Dada two trains. Max picked one up and handed it to him. Randy jumped in counting, "One..."

Damn parents.

Fri Aug 29, 2008

I can only picture it. An exciting moment for me these days is waking when Randy happens to be up and nearby, so that he can help roll me over or out of bed. So I haven't been positioned to join Max, Randy, and baba on their afternoon bike rides through Boulder's network of trails and parks. But I can imagine all of it through Max's eyes - even when they are shut.

Sat Aug 30, 2008

I suppose it is a little intimidating - this aggressively enormous protuberance, threatening at any moment to burst or to swing and topple over a small child. Naoko photographs it from a safe distance when she arrives this evening.

Wednesday really seemed like the day for this baby to break out. Thursday would have been nice too, with both boys having a birthday on a 28th. Randy and I would have been perfectly happy with Friday, with Kate still around. Now we're thinking that any time over Labor Day weekend would have an appealing symmetry with Max's Memorial Day weekend birth.

For whatever reason, Max finally agrees to touch my belly this morning - tentatively, briefly, but while there's still time.

Sun Aug 31, 2008

Christian's mom had joked about trying to win the race. She does today, with a "nice, easy, and fast delivery" of a strapping baby boy. He has pooped. I'd love to be in her company, even if I've lost the race.

But I may yet win our other competition. We've been vying for who could recruit the Brogans to help out around the birth - Christian's family with the New-Jersey-beach-getaway angle, or us with our foothills-of-the-Colorado-Rockies angle. (Reminds me of a debate we had before our first group play date with Ellie.) I argued that the Brogans would be better suited to help someone who could utilize all their skills, since Christian no longer has a broviac or ostomy.

Ellie's mom will be here in a week. She just happens to be traveling in the area for work, so it may end up being a quick lunch date, rather than solo handling of Max's sterile procedures while Randy sees me through that easy labor and delivery.

However it all works out, I can't wait to join 'em.

Mon Sep 1, 2008

Tue Sep 2, 2008

But it turns out that X may give me a taste of my own medicine. Firstborn Junko arrived before her due date, after water breaking, at a decent hour of the night - just like Max. I (second-born) showed up 4 days late, in the wee hours of the morning.

I hope I haven't imposed quite so much with my late arrivals since.

Wed Sep 3, 2008

Numerically, the changes in liver enzyme measures turn out to cancel each other almost exactly - no net change. Randy argues that we should look at proportional changes instead. Those suggest an improving trend. Either way, Max's enzymes look better than we would expect given his improving hematocrit.

Thu Sep 4, 2008

Fri Sep 5, 2008

When my contractions start tonight, Randy seems excited and, perhaps more than anything, relieved. Naoko calmly reviews the delivery plan.

In our recent conversations about who's coming, Max has been signing "baby" more than "mouse."

Between contractions, I add snacks to my go-bag, update my facebook status, skim a paper draft, and shower. During contractions, I quietly panic. The pain is unpredictable in its details, but I know that it will get much worse. I've wondered whether all we've been through with Max might position me to better endure the pain of childbirth. But Randy is probably right, that Max has made me stronger, but not tougher.

Still, I'm at least as disappointed as everyone else when the contractions stop after a couple hours. False alarm. Maybe I'll feel more ready next time.

Sat Sep 6, 2008

Our hourly routine is to count out "dee" pours of formula for Max to drink from his cup. But when I asked him yesterday how many sips he gets, he said four. I couldn't help but reward him with that many. When I ask him the same question today, he says five.

He proceeds to the best day of eating in his life since his oral aversion first developed. Basil, tomatoes, and bread dipped in olive oil and balsamic vinegar for lunch. Lettuce in salt, pepper, and ketchup for dinner. More bread for a snack just before bed.

Maybe it was this week's session with Speech Therapist Beth, focused on getting Max to put toys in his mouth and chew them.

Or maybe it was decreasing Max's g-tube feeds in the early morning today, since his gut seems to shut down during his deepest sleep.

Or countless viewings of an Elmo video about eating -- sent by a short gut mom who loaded up an otherwise medical-hand-me-down package with fun things for Max.

Or all the feasting Max has witnessed over the last two weeks with baba and Naoko, and every weekend for the last month with Toshio.

In any case, today's progress marks a small step for caloric intake -- perhaps even a negative one given that the lettuce caused some gagging and spitting up. But a giant leap for Max's interest in eating, not to mention his lying and number sense.

Sun Sep 7, 2008

That's how I feel about baba and Naoko's visits -- our hyped-but-anticlimactic helping-with-baby tour. The last few weeks were such a mismatch with our expectations that they feel hazy, like they didn't actually happen.

But Max remembers. Hours after we see Naoko off this morning, he gets into position: an inverted-V, his hands on the ground, butt in the air. It's his signal for Naoko to grab his ankles and swing him around. Ineffective now that she's gone, but a graphic reality check that my family really was here.

Mon Sep 8, 2008

It's being monitored as a precaution, because my due date has passed. The process is supposed to take about 20 minutes. They want to measure active baby time, but X also seems inclined to sleep through my latest "final" OB appointment.

So after 20 minutes of drowsiness, I ask Randy to do his thing. He leans over to talk to X, and places his hand on my vast expanse of belly. (Jabba the Hutt is his latest term of endearment for me.) Works every time. X kicks and wiggles. We're done 20 minutes later. All looks good.

Tue Sep 9, 2008

Max's g-tube comes apart overnight. The tube somehow detaches from the end prong that goes into the port in his stomach. As a result, his formula gets pumped onto his pajamas overnight instead of into him.

I tell Randy about this mishap during a pause in our conversation with doula Bonnie this morning. (She moved to Hawaii after helping with Max's delivery, but happens to be back in Boulder this week and will help with X's delivery too - as long as he arrives before her flight back to the island Sunday.) Bonnie expresses awe at the unpredictable events we deal with regularly. But this one feels manageable - even a relief, because now we know what caused the mysterious leaking that Randy tried to fix earlier in the night, unsuccessfully. The broken g-tube is easily replaceable. Messy, but manageable.

Randy discovers the second break of the day during the evening hook-up - a tiny tear in the broviac to Max's heart. No mess (yet), but this break feels distinctly unmanageable. These long-term IV lines are meant to last for years. We've had an unusual number of breaks, which we had thought might be attributable to the unusual placement of Max's broviac on his thigh. But this tear in his lifeline comes after only two months of the more standard chest-placement. It brings risks of infection, blood loss, and additional surgery.

For now, the tear seems limited to the outer sheath of the broviac, which is separate from the inner tubing that connects directly with Max's bloodstream. Randy stabilizes the tear with tape. I grow increasingly agitated about why this keeps happening. We'll seek advice tomorrow on when we should proceed with the delicate procedure of a sterile repair, and try to figure out whether we can do anything to prevent this recurring problem.

Thu Sep 11, 2008

• Pain medication would not be an option.
• Baby would be in posterior position, with his face toward my abdomen, aka "sunny side up" - a rare position associated with increased pain (because the bony part of baby's head pushes against the bony part of mom's pelvis) and need for cesarean delivery.
• Baby would be "almost as big as mom," as the Paris skeptic puts it later. Hefty (9 lbs according to the nurses, rounded up from the official weigh-in of 8 lbs 15 oz because baby probably peed during the extra bonding time we requested before he was measured), long (21 1/4"), and - most relevant from a pain perspective - large-headed (14 3/4" circumference).
• We would be racing to try to deliver in the hospital instead of in the car.

5:30 am: I wake feeling odd and can't fall back asleep. So I get up to my morning routine of breakfast and email.

7:00-8:00 am: I monitor as my contractions become stronger and more regular. I can fill 6 syringes for Max's routine care between contractions.

8:00 am: Increasingly convinced that this is not a false alarm, I text-message Nanny Kate, who can come right away. I wake Randy. He takes on my task of disconnecting Max from his pumps, because the pain coming with contractions now reduces me to all fours. The epidural I had for Max's delivery means I do not recognize that this brand of pain signals that the baby is ready to emerge. I hear Randy tell Max that my moaning is singing. I call doula Bonnie. She asks me to describe the pain, talks me through one set of contractions, then instructs me to get in the car immediately.

8:30 am: Kate and Bonnie arrive at our house. Kate plays with Max, while Bonnie joins Randy and me in our car. As we debate the fastest route to the hospital during rush hour, Bonnie instructs me NOT to push, and to focus the urge to push on breathing out instead. I manage this through some contractions, but for others, the urge to bear down to escape the pain is too strong.

9:00 am: We arrive at the hospital, Hollywood-style: careening up to the entrance and abandoning our car there, my wheelchair being whisked through the lobby as I pant and moan and gawkers turn to see whether I'll make it in time. Bonnie later suggests that if the baby had been any smaller or in a less complicated position, I wouldn't have. I am wheeled through the labyrinth of the Labor and Delivery Center to my room, and lifted onto the bed.

9:39 am: A few pushes later, our beautiful baby emerges.

When we had tried to picture him, we could only imagine Max. (Perhaps like we could only imagine having 16 more hours of waiting at the hospital for baby to emerge into the world, based on how Max made his entrance.) Randy sees some resemblance. But for now, baby reminds us more of Grandpa than anyone else.

I know it's universal, this sense that your kid is the cutest in the world. Just like I know this fact to be objectively true about Max, and now about his brother.

Whole new reservoirs of love open. Intruder no more.

Fri Sep 12, 2008

One of my college housemates and his wife took a month after their second baby was born to settle on a name. Randy looks alarmed when I share this story with him this afternoon. Birth announcements with no name (which I was thrilled to receive from Christian's mom) are apparently okay. Leaving the hospital without completing the birth certificate form, not okay.

We expected to have at least another day to finalize our decision. Baby is great, having pooped 4 hours after emerging and several times since. It's my labs we're tracking this time around. I fainted during yesterday afternoon's move to the Mother/Baby Center. My hematocrit dropped sharply from the afternoon to evening, and then again to this morning. This afternoon's labs show a slow in the dropping, but not the stabilizing or improvement the doctors want to see before discharging me. I'm down to a level that would normally get transfused. I can't stand without feeling dizzy.

Then a scheduling glitch leaves us without anyone to care for Max this evening. We need go get home. I just need to pass a test: to go from lying down to sitting to standing, while keeping a steady blood pressure and heart rate. I pass the blood pressure part, but become tachycardic (with heart racing to ~140) upon standing. This is deemed good enough under the circumstances.

Randy packs our things. But he won't pack the birth certificate form. He says we're ready. He's right. We go back to the name we started with. We drive home, eager to introduce one love and light of our lives, Maxwell Charles Munakata, to the other: Kai Kamori O'Reilly.

Sat Sep 13, 2008

Sun Sep 14, 2008

Then we switched our focus from little brother to big brother.

I didn't think jumping could get any cuter than when Cousin Toshio was teaching Max. But when we asked Max to hand down his wisdom to Kai last night, he gave the five cutest hops of all time. He then went on to show Kai how to stack and count toilet paper rolls (make a tower of 6 rolls, then count "five, six!"). This morning, Max declares that he no longer wants to wear diapers. This evening, he discusses his most advanced subject matter yet, recounting how Toshio threw a submarine into the hot tub this afternoon. ("Dato frow boppi.")

Seems like being a big brother might help Max appreciate having a little one.

Mon Sep 15, 2008

Three days after I delivered Max, we transferred him to St. Joe's. Randy rushed down the corridor with Max in the carseat. I waddled as close behind as I could. As we passed a family heading in the other direction, the father explained to his kids, "She's about to pop out her baby." I filled my maternity clothes for months afterward.

Before then, I had no idea that women can continue to look pregnant after giving birth. I don't know how this secret has been so well-kept.

Cousin Toshio put it most bluntly yesterday: "You look like you could have another baby!"

Anne Lamott put it most endearingly, resting in bed after giving birth, her belly lying beside her like a puppy dog.

Today is the first day I can walk without getting dizzy. We celebrate with a short family outing up the street: Max, Kai, Randy, baba, and me. And my puppy dog. Helping to spread the secret.

Wed Sep 17, 2008

I suppose there have been hints, like when we've been caught off guard by little things that remind us of the darkness of our early days with Max.

Another mom tried to prepare us. Her short gut daughter was born 6 days after Max. Her second baby arrived 9 months ago -- a healthy son. She talked about how much healing he brought to their family.

I couldn't relate. We have come to terms with Max's condition, and he is thriving. What do we have to heal from?

But sure enough, Randy and I felt overwhelmed with relief and gratitude during our drive home from the hospital with Kai. We weren't transferring from one hospital to another. We weren't removing our infant carseat, with no idea when it would be needed.

Nursing Kai all night long is a welcome kind of grueling - one where I can provide all that my baby needs in that moment, rather than one revolving around surgeries and uncertainty and the glare and cacophony of the NICU.

We giggle over Kai's farts. From the faraway look he gets as he seems to realize they are coming, to the intense concentration in his face as they build, to his whole-body rumble as they pass.

When Kai started doing tai chi in the wee hours this morning - slow, graceful movements of his arms and legs - we couldn't help but lie transfixed by his performance.

These moments are brand new to us, but couldn't feel more natural. They are simple, fleeting, delicious. They bring the healing we didn't know we needed.

Thu Sep 18, 2008

Fri Sep 19, 2008

His broviac gets repaired uneventfully this morning. We're trained to do this procedure in an emergency, but opt to take Max to the hospital for this planned repair. No one has any idea why his lifelines keep breaking. For other families, they often break in a vulnerable spot where the tubing transitions from thick to thin, but Max's lines break in the thick part of the tubing. The repair gives us more line to work with, which will allow us to tape the vulnerable part to distribute any strain on it - a technique that has seemed to prevent breaking in the past.

Somewhat more eventful are Max's measurements. His continued weight gain means that we will reduce his TPN further. This reduction will allow him to get less than 50% of his nutrition from TPN for the first time. We haven't been able to increase his feeds recently, but his continued growth suggests his intestine may be absorbing more from what we are giving. We will also try reducing the amount of fluid Max receives with his TPN, from 900 to 800 cc/night, since he seems to be sufficiently hydrated. If we're lucky enough for Max to transition off of TPN for nutrition someday, hydration may be the final battle we fight. (The large intestine, which Max is missing, is generally responsible for absorbing fluids.)

Good news, a good fix, and good to know we can still manage - at least with baba (who helps with Kai while Randy takes Max to the hospital) here.

Sat Sep 20, 2008

We felt like we could know no greater happiness than when baby Max tried to share his nystatin syringe. Then toddler Max gave me a platter of artfully-arranged toys. Tonight, big brother Max gathers his best collection yet: a bus, a shoe, a spoon, a bag, a box, a pamphlet, a couple cars, a packet of rehydration solution that we are sampling. One by one, he brings each offering and places it at Kai's feet. Kai rocks on in his swing, unaware.

I believe our friends. Too bad about their "until adolescence" caveat.

Sun Sep 21, 2008

We're also getting in great showers, thanks to our newfound sense of what counts for that too.

Tue Sep 23, 2008

I'm not sure why. When I asked Randy last night what he thought our chances of survival are without baba (who left this morning), he uncharacteristically gave the same answer I would: "Low."

Still, today we feel like we can contemplate driving into the mountains for a few days around Christmas with my family. Berkeley next year seems like a real possibility.

Maybe these are delusions, fueled by chunky sleep, and designed to help us through our survival-mode reality. We'll take a cue from Paris and indulge in the fantasy.

Wed Sep 24, 2008

Max often demands, "BAYEEbee, mee." (Baby, come.) We explain that baby can't walk or even crawl, but we can bring him to Max. This morning, Max then hugs and rocks Kai. This evening, he tries to carry Kai, then shows him puzzle pieces and his train set.

Just too sweet to interrupt - which means that we end up watching as Max's affection inevitably turns to slapping.

Kai startles if he's sleeping, but otherwise, seems to barely notice. The cats respond to this treatment by running away, hissing, or baring their claws. Maybe one of the boys can learn something from this.

Thu Sep 25, 2008

We mention our take-home-baby concerns. Kai's spit-ups can seem more reliable than his nursing. This apparently isn't unusual. Weight gain serves as the main check on whether the problem is serious. If Kai is getting enough milk, he should have returned to his birth weight (8 lbs, 15 oz) by today, after his expected weight loss following birth. He weighs in at 9 lbs, 12 oz. All his other measurements and assessments also look great.

We take him up one floor to introduce him around the OB wing - to lots of oohs and ahhs and big-fat-baby comments.

I learned the "take-home baby" term from a colleague, whose firstborn spent his first week in the NICU. She described how she hoped for (and got) a take-home baby with her second child.

We take Kai home, happy to be discovering all that this means.

Fri Sep 26, 2008

Nursing Max once a day meant that this time was sacred. We didn't take it for granted. He didn't act entitled. He didn't love me for my milk.

Nursing on demand is a different story. When NP Kristin drops by this afternoon, I mention that I feel like Kai is using me. She assures me that he is. Like only a take-home baby can.

Sun Sep 28, 2008

Luckily, Randy's extended family brings the impromptu party (and feasts) to us this afternoon - Great Aunts Jeanie and Sally, cousins Corrie, Yves, Maya and Mateo.

They get a few minutes to meet Kai. He spends the rest of the time nursing, which he has been doing all night and day - apparently due to a growth spurt that commonly happens between 2 and 3 weeks of age. Randy thinks the few minutes are just the right amount of attention for Kai to get, as far as Max is concerned.

We'll see whether Kai is any more cooperative when we get back to our social calendar. The next growth spurt is expected at 6 weeks.

Mon Sep 29, 2008

When Kai nurses, Max exclaims with the same fascination and points to his own mouth.

When Kai kicks, Max exclaims again and points to his own feet.

Randy and I find amusement in how enamored Max is with each simple act of Kai's. Then we return to watching Kai do nothing in particular, and to discussing the nuances of his cuteness.

Wed Oct 1, 2008

When Randy and I went out to dinner with colleagues earlier this year, Akira needed to spit out his gum. I gave him a gum wrapper, which he used and then placed on the table. I didn't want us to have to look at the gooey lump through dinner, so I picked it up and put it in my fanny pack. Tim claimed I wouldn't have done that before having a kid.

I manage to remember that after nursing Kai this afternoon. So I let him finish out his spitting up on my shoulder. Then I change him out of his newly poopy outfit. Only then do I hand him over to the open arms of friends Marie and Laura. Everyone seems happy with this arrangement.

Thu Oct 2, 2008

I was wrong about joining Ellie's mom - she wasn't able to make it to Boulder during her Colorado trip after all. Hopefully next time.

But I have joined Christian's mom in earnest. Both of our second sons arrived:

• at 8 lbs, 15 ounces
• at 21" long
• in the rare posterior position
• 6 days late
• nameless
• almost on the way to the hospital

They take us back to the darkness of the early days with our firstborns, but also to the Camelot that followed - which helps us to appreciate the Camelot that is now.

Fri Oct 3, 2008

Friends have confessed that there came a time with their second-borns when they turned to each other and asked, "What were we thinking?" Or more accurately, there came a time, they say around 4 months, when they finally stopped asking that.

Another friend updated her facebook status today to say that she had her first really lovely day with her second baby (who had the same due date as Kai). Randy and I know the feeling. As grateful as we've been for our Camelot, our first really lovely day was this Monday. We ventured out, feeling miraculously well-rested, for our first meal out with baby (to the same restaurant where we first took Max, just with a new name and location). Kai slept through the whole relaxed, delicious outing. Then we drove with both boys up the canyon to see the fall colors - glorious despite the fact that we ended up among evergreens.

Otherwise, we hope at best for moments of Camelot. They take my mind off the stabbing pains in my back (which I keep throwing out, since Kai was born, while doing Max's morning cares). They interrupt our sleep-deprived tiffs - about whether I should really be the one responsible for doing those morning cares, for example.

We get some moments tonight. We welcome Nana with a happy hour on the pedestrian mall, then stumble upon CU homecoming celebrations. We've never been to a football game. But the energy of the marching band is infectious. Max dances and claps and joins the masses following the band down the street. He glances around occasionally - from Randy's shoulders or holding his hand - to check in with me. He looks so happy I could cry.

We come home to debate whether Kai's inconsolable crying represents true colic.

Expecting our next really lovely day sometime in the New Year sounds about right.

Sat Oct 4, 2008

Mon Oct 6, 2008

Max spiked a fever of 102 at 3am on Sunday. The risk of an infection in his blood - which could be acquired by bacteria entering through his central IV line or crossing out of his compromised intestine - meant he should be taken to the ER, started on antibiotics, and guaranteed at least a 2-day hospital stay (until the blood cultures come back negative for 48 hours). Randy and I packed and debated over the next hour. One suitcase for Randy's things. This one was easy, when Randy discovered that his missing jeans and several days worth of other clothes were never unpacked from the suitcase we took for Max's liver biopsy. One suitcase for Max's clothes and medical supplies. Packing this one felt clumsy. 21 months have passed since we last did this for a real infection, and almost 14 months since our last false alarm.

Our debate concerned whether this is really a bacterial infection in Max's blood, or a false alarm (e.g., just a regular virus). The risks associated with such infections can be big, which is why the on-call doctor urged us on Sunday to bring Max in. Still, we couldn't help but try to weigh those risks against the risks of going to the hospital for a false alarm, compromising Max's system further and exposing him - and his central IV line - to hospital-grade germs.

Max has been showing signs associated with just a regular virus, such as low output from his stoma, and mucous out his fistula. By the time we were packed, his temperature had come down to 101 on its own. We decided to monitor it aggressively, since we are up every couple hours with Kai anyway. It continued to drop, down to 100 by 6:00 am Sunday, to 99 by 10 am (which was the temperature we reported to the on-call GI doctor), and all the way to normal after Max's nap, where it has pretty much remained since.

Max has been acting just fine. He grabs the thermometer from us and takes his own temperature, then proceeds to take the temperatures of his trains - once on each side of their faces, just like we do for him.

For the definitive test, we draw blood for a bacterial culture this morning, along with blood for the regular labs that were due today anyway. We tried to do this draw yesterday, but getting the supplies for the bacterial culture took hours of phone calls with staff at 4 different facilities, and the timing didn't work out.

We go on to enjoy a completely normal day - with a renewed sense that normal IS Camelot. We start the gradual process of recovering from how emotionally raw the last 43 hours of dread and uncertainty have left us.

At 10pm, the phone rings. The cultures are positive. Randy and Max leave for the hospital. I stay behind with Kai.

Tue Oct 7, 2008

This plan was based on the assumption that there would be sleep to interrupt. But Max chats excitedly with Randy throughout their night drive to the hospital. Perhaps Randy shouldn't have divulged their destination. Upon arrival, they face the usual wait in the ER for an inpatient room, followed by a wait in their room for a crib. With his schedule out of whack and in the unfamiliar (or all too familiar?) longer-term hospital setting, Max fusses most of the night, keeping Randy up with him.

The day isn't any better. Max is given an antibiotic that he has reacted poorly to before, and he reacts poorly to it again. (His chart should indicate that this drug needs to be delivered more slowly, which prevents the problem.) He gets itchy and agitated and refuses to sleep or even to settle.

In the afternoon, Randy finally concedes that he needs relief. I'm desperate to bring it. When Nana and Kai and I arrive, Max has fallen into a peaceful slumber for the first time in almost 24 hours. I can't take my eyes off him. I can't believe how big he looks. Randy can't wait to hold Kai. He can't get over how chunky he is.

There isn't much news. Identifying the specific bacterial strain(s) usually takes a while, and most of what Randy was told, he's too exhausted to remember or convey. He does hand me a printout of Max's regular lab results, with the exciting news that his liver enzymes are much improved, despite the fact that we would expect them to worsen with this infection. Predictably, at least according to the crazy correlations we're tracking, his hematocrit has dropped too, to around the low end of normal.

I don't want to pull away from hugging Randy at the end of the visit. It feels like our family has been separated for a long time. This is only the beginning.

Wed Oct 8, 2008

Max sleeps for 7 hours overnight. This is much better than his sleepless check-in night, but a far cry from his usual 12 hours. And he is still refusing to nap. Nana visits the frazzled boys on her way out of town.

Nanny Kate and I take Kai back to Good Sam, where he and Max were born, for his standard newborn hearing test. He needs to fall asleep for it, which is why we're here - he wouldn't comply when they tried to run it the day after he was born.

We receive our instructions. Kai should fall asleep. I should stay awake to prevent him from pulling at his earbuds or his electrodes. Kai settles into the crook of my arm, and I settle into a comfortable armchair. The lights are dimmed. I fall asleep, Kai pulls out an earbud, my instructions are repeated. We go through this cycle several times, with variations only in which earbud or electrode Kai pulls. Eventually, we fall asleep together. The test shows that Kai's hearing looks great.

If only the results from Max's tests could come back so quickly, positively, and restfully. But it takes a couple days in the hospital, with sleep deficits growing, to identify three bacterial strains in his IV line: strep, e coli, and enterococcus. E coli is the only gut bug, which means that Max got this infection through external contamination of his central line - most likely as a result of an overnight leak from his ostomy bag last Friday. Other families have devised ways to prevent such leaks from contaminating the line, so we will look into pursuing those.

Last night's blood draw still tests positive for bacteria, so we turn to hoping that tonight's draw will test negative for 48 hours - the requirement for Max and Randy to come home. I suspect that both of them will become compliant sleepers as soon as they do.

Thu Oct 9, 2008

Fri Oct 10, 2008

Max and Randy seem genuinely happy for the first time since they left for the hospital Monday. Randy throws a cloth over his laptop, covering the videoskype image of baba and jiji (who arrived in Boulder last night) and Kai and me. Each time Randy removes the cloth, we have jumped around to reveal a new combination of people in a different configuration. Max and Randy giggle deliriously.

They've managed to get their first full night of sleep. And, Max's cultures are reading negative at 24+ hours. If this continues through tonight, they come home tomorrow.

Things look even better in the afternoon.

Randy negotiates an early discharge. We can administer the meds at home, as families typically do to finish out the antibiotics course after cultures test negative. We can draw the blood for additional cultures over the next couple days.

We'll be on a tight leash. Randy will head straight back to the hospital if Max develops a fever or if any of the cultures test positive, including the one that has 8 hours left for Max to be considered clear. Cultures will be drawn again 5 days after Max finishes his antibiotics course - a typical window for "sticky" bugs to return in. If they're back, Max's central line will be deemed unsaveable and he will be re-admitted. His line would be removed, he would receive antibiotics through a temporary IV line until his cultures are clear, and he would then have surgery for a new line.

These scenarios get relegated to the background as our family reunites at home tonight.

Mon Oct 13, 2008

The bad news is that we're not sure this was the best decision. We've had phases where the g-tube that goes into Max's stomach isn't leaking, but they are phases.

The good news is that we can get useful consults when Max is in-patient, as Randy did on the g-tube issue last week. The opening into Max's stomach has grown too large, as a result of the g-tube moving around in it (like a stick in sand). If we can stabilize the g-tube, using paper tape to affix it to Max's abdomen, the skin should grow back in around the hole to prevent leaking.

The bad news is that this process may take a month or two. In the meantime, we will contend with messy leaks, and Max will have trouble retaining his full caloric input.

The good news is that with his newfound appetite, Max is ravenously demanding food for the first time - oatmeal, graham crackers, and chips on Saturday. Lots of rice out at happy hour with baba, jiji, Toshio, and Auntie Junko yesterday, followed by ramen upon returning home. Rice and veggies tonight from a drop-off by Great Aunt Jeanie. These sessions involve more chewing, swallowing, and caloric input than ever before, not to mention impressive use of forks, spoons, and chopsticks.

And the great news is that we are still home.

Tue Oct 14, 2008

We thought that he had 3 bugs in his IV line - one from the gut, two from outside. The outside bugs would indicate that Max got this infection through contamination of his line. Yesterday, we learned that he actually had only 2 bugs - both from the gut. This means that Max could have gotten this infection by bacteria crossing out of his compromised intestine into the bloodstream. But we still suspect contamination from an ostomy bag leak.

We thought that if the bugs came back after the antibiotics course, his line would automatically get pulled and eventually replaced. But yesterday we learned from Austin's mom that Pittsburgh takes an intermediate step to try to save the line - using an antibiotics lock, where they allow the antibiotics to dwell in the central line rather than pumping them through. Given how precious these lines (and the access routes they use) are, we will ask about this option if we face this scenario.

We thought that this scenario of the bugs coming back was a reasonably likely one. We were told that the strep bug can be sticky and hard to clear. But yesterday we learned that Max didn't have the strep bug. Instead, he had leuconostoc, a bug often misidentified as strep or enterococcus (or both, in Max's case). These bugs appear to be less sticky, so we should be more optimistic about clearing them.

At least that's our current understanding.

Thu Oct 16, 2008

Baba and jiji headed home early Monday. Grandpa and Grandma arrived late that night. We enjoyed an easy brunch out with sleeping Kai, much appreciation of his cuteness (despite the pizza face look he is currently sporting), lip-smacking calls from Max, a delicious treat of a home-cooked steak dinner, and bits of conversation.

Randy knows all this. It's just a blur. Even with naps, he hasn't caught up from the sleep deprivation of the hospital stay. Max's antibiotics regimen requires 6 sterile procedures spread across the course of an hour 4 times throughout the day and night, plus the sterile mixing and prepping of all the materials. I'm often nursing Kai, so Randy is usually the one nursing Max.

And Kai was at his fussiest yet on Tuesday, crying through most of the night. (Come to think of it, none of my memories with Grandpa and Grandma seem to involve Wednesday.)

Blurry, but yes, really a nice visit.

Sat Oct 18, 2008

When they threw a baby shower for Max, Randy and I didn't want any gifts. We were living in a temporary apartment, ready to move back home to our hand-me-downs. So they gave us the perfect gift of a certificate for photo sessions across Max's first year. But at 3 months, Max still hadn't come home from the hospital. At 9 months, we were living in Boston. At 6 months and 1 year, we were busy with celebrations and the process of getting settled (or re-settled) with Max at home.

For my birthday last year, they gave a certificate for snowboarding to help me get back on the slopes. We didn't know that I would be sitting out the season, thanks to Kai.

We eventually put the baby shower gift toward photographs of Max's second birthday party. And I'll use the snowboarding certificate someday, maybe when Max is ready to ride.

For my birthday tomorrow (yes, there is a spectacular birthday card in the mix too), they give a certificate for the Boulder Book Store.

I can read while Kai uses me. Max's card has a functional steering wheel. I don't think we'll be waiting years this time around.

Sun Oct 19, 2008

But get out of the house we did, and in a way that should increase the chances of achieving this feat in the future. We walked down toward the pedestrian mall as a family, and got a bike as my early birthday present, to replace the one I sold just before Max was born. Max and Kai not only get along fine in their stroller for two, they have never looked more adorable, and have never given us such an endearing sense of themselves as brothers, nestled in together.

We celebrate today with a bike ride through fall colors. Randy tows the boys (the stroller doubles as a bike carrier) and introduces Kai and me to the routes that he and Max explored all summer. We cap off our outing with a delicious sashimi dinner - well worth the struggles, though Kai's crying and Max's rice-throwing probably leave the staff wishing that new moms weren't implored to get out of the house quite so often.

Mon Oct 20, 2008

Did I really imagine that this darling boy would ever use me?

Tue Oct 21, 2008

We appear to be on track to move on from this infection. Randy drew Max's labs yesterday morning, to check whether the infection had returned after Max finished his antibiotics on Saturday. Cultures are negative so far. Max's hematocrit is back up into the normal range, and his liver enzymes are holding steady at their recently-improved levels.

But I'm stuck thinking about how the infection happened. The ostomy bag leak alone could have caused it, which is the scenario I've focused on so far. But Max has had many bag leaks that did not cause infections. Maybe this one just somehow managed to penetrate what should be a closed system of tubes and connectors to Max's broviac. More likely, it was the leak in combination with how I disconnected Max from his tubes. Usually, when we separate one sterile connection from another, we can assume that they remain sterile as long as they don't touch anything. This is what I did when I flushed Max's broviac with saline and heparin that morning. But given the bag leak, I should have disconnected everything all the way up to Max's broviac, assumed that things were not sterile, and started over with a good alcohol scrubbing. This is what I've done in the face of bag leaks before. But I wasn't thinking, and didn't do it. Two days later, Max spiked his fever, signaling his first infection in 21 months.

Now he is losing weight. The infection (or the antibiotics) might have interfered with his absorption of food. His frenetic activity and lack of sleep in the hospital probably didn't help. Or maybe this has nothing to do with his infection. We also decreased his TPN soon before the infection, and his enteral feeds have been effectively decreased since, as we wait for his skin to grow back in around his leaky g-tube.

We know that kids often lose weight when they hit bumps in the short gut road, and isolated incidents like this should not cause serious problems. But it is demoralizing to see Max's pants falling down after all our efforts to support his growth, and to witness his frenzied begging for milk that we can't give him. And to think that I might be responsible.

Fri Oct 24, 2008

Before I finish describing these illusions this afternoon, Randy immediately and reassuringly knows exactly what I'm talking about.

The illusions help us to appreciate Kai's health - no tubes or wires. But they also make it easier for us to fall into if-only's, wishing that everything had been just fine for Max, too.

We're still healing.

Sat Oct 25, 2008

Randy and I ride home with Max and Kai this afternoon, after brunch with friends Dick and Jan. As we huff and puff up a hill, the chain falls off my new bike. I'm still getting used to the pedals that my shoes clip into. Before I can free a shoe, my bike comes to a stop. I fall over with it, onto my left knee.

I haven't trusted myself with Max's full morning routine since his infection. But the timing of Kai's nursing works out for me to do Max's cares today, and I can do them on the floor to avoid the strain on my back caused by leaning over his crib. So I do everything - including re-sterilizing Max's broviac, just to be safe, while disconnecting him from his tubes.

This afternoon, I pick myself up off the ground - bruised, scraped, and a little embarrassed. I explain to Max that mama really does know how to ride a bike. And I show him how I can get back on it.

Mon Oct 27, 2008

Maybe any kind of absence makes the heart grow mama bear.

Tue Oct 28, 2008

Wed Oct 29, 2008

We confirm today that Kai couldn't be any more lulled by our research interests. He sleeps in the baby carrier on Randy's chest, while Randy gives a talk to his lab group.

If only we'd known this when Kai was so fussy. (Randy and I can calm him more reliably now.) We'll stock up on academic videos for the babysitters.

Thu Oct 30, 2008

Kai smiles and coos and giggles for a good twenty minutes lying between Randy and me in bed this morning. It's okay that he's directing all of it at the ceiling.

And Max is back, at last. The low point of the fallout from his infection was last weekend, with him pleading for milk for hours each evening, and erupting into tantrums and tears at our inability to provide enough. Randy ultimately decided that it was just terrible-two's, perhaps brought on by the realization that Kai is here to stay. When he sat down with Max to try to get to the root of the problem, Max responded only by saying that nothing was wrong. Maybe his mood has since improved because his feeds are back up with his g-tube site healing, and we've increased his TPN to see him through this rough patch. But he has also seemed more well-adjusted since that tender conversation. He and Ollie have run around giggling together the last couple evenings.

I savor their joy from the periphery. Does this really have to change, so that we'll end up wanting specific forms of happiness for our children? Randy suggests that these musings would also be good ones to document to laugh at later. I take it that's a yes. But we'll be so much more reasonable about it. Max and Kai can laugh at that one too.

Fri Oct 31, 2008

Now we have a new metric of good. Max is not that impressed with Randy's cowhide vest, cut from Joanne fabrics during Max's nap. He's a little more curious about my matching chaps. Kai as a pea pod seems no more or less interesting than usual. But Max gradually gets into the spirit on the pedestrian mall, in the mayhem of fairies, fellow dinosaurs, whiskered creatures, and a Thomas the tank engine. He seems increasingly entertained by what we have to say. "There's a snake in my boot!" "You're my favorite deputy." "The Prospector! He'll wanna meetcha!"

Max lasts a couple hours there, then makes it to a couple houses for trick-or-treating in our neighborhood with Cameron and Allison. He ends the night by trying to pull our bowl of candy away from pesky visitors.

We thought we could never top our Halloween as the butt-of-Yuko's. But as characters from one of Max's favorite movies, we find that our new metric of good brings more pleasure - and fewer groans.

Tue Nov 4, 2008

Someday, he could be President.

Wed Nov 5, 2008

Fri Nov 7, 2008

We get one tonight. Max, Kai, Randy, and I lounge in the mosh pit - no nursing or bouncing or academic talks required by Kai, no tantrums or medical needs in these moments for Max. We got a similar glimpse last night, relaxing as a family on our bed.

We've booked a place in the mountains for Christmas. Today we start looking into housing arrangements for Berkeley.

Sun Nov 9, 2008

We seem to be managing pretty well with translations.

A Dutch friend provides blog translations this morning: Robin is starting on Omegaven in the Netherlands, after an approval process of only a couple days rather than the usual weeks or months. Emily's doctors in Belgium are now looking at it as well.

Mon Nov 10, 2008

As far as he's concerned, imitation is the highest form of teasing.

Tue Nov 11, 2008

Wed Nov 12, 2008

Randy and I continue to tweak his Elecare formula. We have increased the concentration from 28 Calories/ounce to the recommended maximum of 30 Calories/ounce, and he seems to be absorbing that even better. (Too dense or too watery can cause dumping, and it seems to be a matter of trial and error to determine what works best for each kid.) We have also been able to start gradually increasing his feeding rate again.

All should mean a sooner need for bigger pants.

Thu Nov 13, 2008

The conversation is relaxed. Randy and I are not rushing to discuss pages of notes on our observations and potential medications and procedures. Dr. Zerin asks whether we have any questions. We don't.

Fri Nov 14, 2008

This week Kai mostly sleeps through Tim's promotion talk, student presentations on the development of executive function, and another visiting speaker. People just don't buy our talk about all his crying.

We said the same thing to Ben's dad when Ben slept through meetings. But these kids are just lulled by our colleagues. Kai fussed between Randy's meetings yesterday. Randy solved the problem by going to talk with one of his students, which put Kai right back to sleep. Ben was apparently genuinely colicky. I apologized to his dad yesterday for all our accusations. I figured someday our colleagues would come around to doing the same for us.

Kai proceeded to sleep in his crib straight through our 3 hour dinner out with the visiting speaker - and for the next 4 hours. Unprecedented. But then he wakes around 2am and cries much of the night. He can normally be soothed by nursing, but he mostly refuses to this morning - likely a side effect from yesterday's immunizations. We're wrecks today. Yes, Kai is generally crying less as he has gotten older and has trained us up on what he wants. We weren't completely making things up about the early days. But after last night, we realize that things have never been all that bad.

Sun Nov 16, 2008

My hematocrit normalized by my 6-week postpartum appointment. My back has been healing, thanks to glorious massage treatments from Nana during her visits.

But I woke to an intense pain in my wrist 5 days ago. I haven't had time to do much other than compensate, lifting and holding Kai in the nook of my arm to try to spare the wrist, and hoisting Max out of his crib in the same awkward way. Both boys feel like they're in the 90+ percentile for weight to me.

This afternoon, Kai finally gets to meet (and give big smiles to) Great Aunts Carse and Paula and Great Uncle Eric. We walk to meet them on the pedestrian mall instead of biking the trails as originally planned - because of my wrist, Randy explains. Their concern makes me realize I should get it checked out.

Googling "wrist tendon" reveals that de Quervain's tenosynovitis involves inflammation around the base of the thumb and the wrist, causes pain when the pinky is moved toward the wrist, and is common in new mothers due to the repetitive motion of picking up the baby. Check, check (though my pain is even greater when the pinky is moved away from the wrist), check. It may be treatable with a wrist splint, ibuprofen, and icing.

I'm thrilled to have a (tentative) diagnosis, which brings the sense that I can deal with the injury. I'll also take the diagnostic category of "new mother" over the "aging wreck" category that I had been assuming.

Tue Nov 18, 2008

Immobilized wrist
means no Max cares, even Kai's.
No blogging their lives.

Rand checks VRS*
reviewed by folks without hands.
We will get through this.

*voice recognition software

Thu Nov 20, 2008

Fri Nov 21, 2008

My doctor said de Quervain's results from twisting the wrists (like I did dozens of times a day with Max's syringes and tubing). A physical therapist says today that the ileosacral ligament strain that he identifies in my back is likely from leaning over for prolonged periods (like I did for Max's cares each morning, bending over his crib railing while he lay on his back).

This worked throughout my pregnancy. The doctor suggests, and the PT agrees, this may have been thanks to increased production of relaxin hormone, which loosens ligaments and tendons to help accommodate the baby, but also affects the entire body. Kai was protecting me while I carried him. Not any more.

Now the brothers could reverse protective roles, if only Max could help me lug this tanker around.

(with typing help from Randy)

Sun Nov 23, 2008

VRS should arrive soon.

Mon Nov 24, 2008

Tue Nov 25, 2008

I also can't blame Max for insisting on Randy as the one to eventually console him. He is rather reassuring. He reminds me that Max isn't the sum of these checklists.

Max is Max. Max is the kid who last night turned on our projection tv system (I can never remember how to do this) and asked to see the video of Grandpa flying in a helicopter. Who zipped around the house for a good hour before bedtime, whispering "fast." Who showed off his jumping on the couch during videoskype with Christian a couple weeks ago, while Christian played his xylophone and recorder. Who squeals BABY EAT!! when it's time for Kai to do so.

Max is Max, who like the rest of us, can be allowed the occasional meltdown and need for reassurance.

(With help from MacSpeech)

Wed Nov 26, 2008

It makes Max cranky -- Kate whisks him outside to cut off another temper tantrum this morning. It makes Kai sleep and settle himself unbelievably well, and smile delightfully in between nose wipes. It makes me go all woe-is-me -- no one understands my suffering, even if they have the same cold. It makes Randy drug up and feel pretty good, except as his medications wear off. At least we're not worrying about anybody passing it on to anybody else.

Then there's MacSpeech's version of the events:

we're dealing with the Rashomon of colds.

It makes Macs cranky -- Kate whisks him outside to cut off another temper tantrum this morning. It makes Chi sleep and settle himself unbelievably well, and smile delightfully in between no swipes. It makes me go all woe-is-me -- no one understands my suffering, even if they have the same cold. It makes Randy drug up and feel pretty good, except as his medications were off. Police were not worrying about anybody passing it on to anybody else.

Thu Nov 27, 2008

Kai nurses once in the middle of the festivities, and hangs out for the remaining hours, smiley and calm. Max has his happy moments with Toshio -- kicking a ball in the basement, playing chase and hide-and-seek through the bedrooms, and studying his video-game obsession all around the house. But Max is still cranky. This translates into whining through the delicious dinner, throwing things even when the cousin he worships tells him not to, and pounding and kicking the floor. Uncle Dave's mom asks him, "You weren't like this, were you?" We make a frenzied exit, spilling our leftovers onto the foyer floor while trying to round up the beast for the drive home.

As a kid, the scene from King Kong that made the biggest impression on me involved one of the captors proclaiming that they had done the natives a service. Another captor countered that the natives would actually miss the beast -- that he provided their challenge and meaning, and if the captors returned in a year they would find the natives aimless and unhappy. I suggest to Randy that Toshio and company might be wandering aimlessly, missing the beast. But really I'm thinking that for this Thanksgiving evening, he has deepened their appreciation for moments of peace.

Fri Nov 28, 2008

It seems important for morale that I contribute what I can. Last weekend, I tried to reassure Randy by reminding him that we are still in the early second-kid period that friends now say they can't remember a single thing about. He said he can't wait for that to happen.

Mon Dec 1, 2008

Max seems to be doing better than ever. His absorption has improved to the point where his daily inputs are often greater than his outputs, even as we have continued to increase the rate of his high-concentration feeds. He makes frequent demands to eat every day -- a major development and a dream for us. He downs his purees and puts in a good effort chewing more challenging foods. He is growing. He is happy, having moved on from King Kong and cold.

So we're stumped by his labs. His BUN - an indicator of dehydration, but also of kidney and liver problems - is off the charts. His liver enzymes have shot up (worsened). The crazy correlation continues, with his hematocrit now at the highest (best) it has ever been, near the top of the normal range. We have never seen anything like this.

Dehyration can potentially throw off the lab results (like the liver enzymes and hematocrit), because everything becomes more concentrated. If Max is dehydrated though, other measures should also be affected, but everything else is normal. And Max should be more hydrated than usual, if anything, given how well his intestine is absorbing. But if he's not dehydrated, why are these measures so weird?

Our plan is to redraw labs in a week, and discuss the results at his regular hospital appointment the day after. And to listen for anything more that other families can tell us.

Thu Dec 4, 2008

Sun Dec 7, 2008

Mon Dec 8, 2008

Tue Dec 9, 2008

Last week's labs were not a fluke. The results from yesterday's blood draw look similar. We receive the news this morning, just before Randy and Kate head to the hospital for Max's regular appointment. I nurse Kai while googling high BUN and bicarb, the latter being the latest development. I read about alkalosis, kidney failure, and mortality rates. I wonder why Max has not returned to his pre-infection weight from two months ago, how much his TPN will need to be increased to get him back on track, and whether this will be the least of our worries.

I'm so worked up by the time Randy calls from the hospital that I can barely make sense of his report. Max's team is happy. He checks in at the 25th percentile for weight and height -- a drop in weight but a gain in height, now nicely balanced. His TPN can stay at the relatively low concentration of 10% dextrose, and we can hopefully keep increasing feeds.

His abnormal BUN values could reflect problems with the kidneys or liver. (The test measures urea nitrogen in the blood, which is produced by the liver from protein and filtered by the kidneys and excreted in urine.) But we learn that high values could simply reflect too much protein in his TPN. We'll see what happens with his new prescription, with about half the protein.

High BUN values can also reflect dehydration. Max's absorption (as assessed by our tracking of his inputs and outputs) has been improving, so this explanation seems unlikely. A urine sample would provide a more definitive test, but Max doesn't feel the urge to provide one while everyone waits. We'll collect one at home.

Max's high bicarb level is only a bit above the normal range, so we can just keep an eye on that for now.

We'll draw his blood every two weeks instead of once a month while working through this. I'll try to be a less panicky googler.

Wed Dec 10, 2008

Thu Dec 11, 2008

It has been almost 3 weeks since we took the plunge. Switching from a crib to a bed seemed like an impossible transition. A crib keeps Max safely confined, within the length of his tubing from his pumps. A bed allows him to try to walk away from them, risking his lifeline. But he was getting too big for me to lift out of his crib. He will need to know how to sleep in a bed for our upcoming trip into the mountains. He said he wanted to sleep in a big boy bed. And other families found the transition surprisingly easy.

So we converted his crib to a bed during Aunt Katie's visit. He skipped his naps the next couple days, spending the time excitedly climbing into and out of bed, and playing with nearby toys. Then he slept on the floor one night. When I went in the next morning, he was proudly sitting in Daddy's rocking chair next to his bed. In all of his excursions, he stayed close to his pumps, exquisitely sensitive to his tubes. He stretched them only when I was nearby, ready to warn him or pull him back. The tubes are pinned to his clothes, so that any strain on them pulls on his clothing, rather than on their insertion points into his skin.

I eventually recognize the squeaking this morning as a sound that the rocking chair has started making. But I can't figure out what the thump is. I enter his room to discover that it is the sound the chair makes when rocked as hard as possible, thumping a big parking garage toy at the end of its back-swing. Max is sitting in the chair, giving me an empowered look that says, "If no one is willing to rock me as wildly as I want, I'll do it myself." SQUEAK THUMP SQUEAK THUMP. He smiles at me, shuts his eyes, and rocks on.

Fri Dec 12, 2008

We didn't feel like we were missing being part of a local network of short gut families until we moved to Boston. We eventually adjusted to life without it after returning to Boulder. But this afternoon, Ellie's mom comes to visit. She reminds me of just how good it is to get together with someone on the same long road.

She marvels at Max drinking his formula. It is one of the best sources of nutrition for these kids, but many refuse it. (We haven't tasted it, but trust other parents' assessment that it is pretty gross.) Max and Ellie are two of the few who demand it. Out at dinner afterward, Max waits for his cup of ice to melt, so that he can get his sips of water. Waiters are often confused by our request for a cup-of-ice-with-no-water. We're stuck with this restriction because drinking it too fast causes dumping. But Ellie's mom is jealous that Max can have water at all, since Ellie can't, for now, like many other kids. (Meanwhile, we're jealous that Ellie has been off TPN for almost two weeks, upholding the Beat-the-Brogans tradition. She's off "for now," her mom cautions. We've all danced the short gut cha-cha, and know not to get too attached to any particular state of affairs.) And Ellie's mom knows exactly what we mean when we say we've had a frenzied afternoon of packing for our mountain getaway -- 250 medical items are needed for just an overnight trip by the Brogans' count.

Her visit is too short. I'm looking forward to missing her more often.

Tue Dec 16, 2008

Maybe it's the medical information form that the nurse gave us when we visited the facility a couple days ago. The form comprises a single sheet of questions about the names of medications and what time to give them. The care notebook we've put together on Max's medical cares is 44 pages long.

Maybe it's the memories of Toshio's daycare drop-off during a family ski vacation when he was about Max's age.

Maybe it's the fact that I've been happy enough the last couple days just riding the free gondola between the base and hotel with the boys, with Randy and me trying to impress Max with our snowboarding on the kiddie stretch of slope underneath it.

But Randy talks me into it.

Max won't need any of those 44 page of cares during a half day of daycare. We'll be minutes away if anything happens. My wrist feels good in the snowboarding wrist guards, even better than in my splint. The day is gray, the powder is fresh, and more snow is coming down - my favorite conditions.

So we ride the gondola down to daycare. Uncle Dave comes in with us for moral support, since Randy was there for him when they left Toshio crying so hard that he barfed while protesting his drop-off years ago.

Kai smiles as he is whisked off in a teacher's arms. Max runs off into the play room, never looking back. Randy calls after him, "Max, aren't you even going to say goodbye?" I can't stop snapping photos. Dave ushers us out.

As we ride up the ski lift with my family, it gradually dawns on me that they are perfectly comfortable discussing topics other than what just happened with the daycare drop-off, what might be happening right now as the kids get settled, and what might happen over the remaining hours of the morning. I brace for the phone to ring with an emergency call from the daycare. The anxiety reminds me of waiting for the transplant call, and the urgent update call from the hospital in the wee hours of the morning.

The pickup time of 12:30 comes none too soon. We rush in to comfort the kids. Max confirms the teachers' reports that he is having a great time. He says he wants to stay for the rest of the day. So we sign the kids up for the afternoon. When we return at the end of the day, I go straight to nursing Kai in a private room. I hear Randy and a teacher chasing after Max: "Come on, Max. You have to leave now. Come on, Max. It's time to go home." I go limp with relief.

I was right that the first daycare experience would be traumatic. I was just wrong about for whom.

Wed Dec 17, 2008

Randy and I stop by during lunch, arriving just in time to see Max tugging on a cute blond girl's hand, coaxing her away from the lunch table, and leading her out of our sight. His teacher explains that Max is trying to introduce her to his favorite activity - playing with water in the sink.

We're sorry to intrude, but Max is eager to chat with us. He counts us off as I nurse Kai: "One, mommy. Two, daddy. Fwee, baby. Foah,... daddy!" He runs back to his friends as soon as his cares are done.

Max makes it easy for us to head out for our final surfs down powdery bumps. Randy has been right back in the groove after our nearly 4-year hiatus. (He sympathetically and heroically sat out the season when I was pregnant with Max.) I'm rustier, maybe needing to find a new groove with my post-pregnancy body and mama-bear mind.

Uncle Dave laughs at the sight of me at the base at the end of the day, lugging a snowboard under each arm, with Kai snuggled in the baby carrier on my chest. He later laments not grabbing a photo. It's not a pose I can hold for long, so I'm glad he grabs the boards instead. The uncaptured image - exhausted, elated, amazed - will be one of many moments to hold onto from another dream trip come true.

Thu Dec 18, 2008

Max has been waking around 6:00 every morning here at Snowmass, calling for "Dato" (Toshio) and "day." He just can't wait for the fun to start. His eagerness has gotten us out the door on time - for breakfast with baba and jiji and Dato's family, and more recently, for daycare and the slopes.

Today's early wake-up gives us the extra time we need to pack everything up. The 250 medical-items estimate doesn't scale up to 1250 items for a 5-night stay, since supplies like a vial of heparin for the TPN last the whole trip. But it feels pretty close.

We surf the edge of a storm closing in on us for much of the 5-hour drive, arriving home while there's still light. Max runs around getting reacquainted with his favorite hangouts, ultimately collapsing in a happy delirium in the mosh pit. Home. Day. Hooray.

Fri Dec 19, 2008

I learn today that I can actually just give my splint to Kai. It is apparently too soft and poorly fitted to do me much good. I had started to suspect as much when my wrist felt better after a couple days out of the splint and in a snowboarding wrist guard. Then a colleague recognized my splint this morning as the same kind he was given for a totally different injury - a broken thumb. This afternoon, a hand specialist drapes a piece of heated plastic over my wrist to create a hard splint that should do more good.

Randy doesn't understand why I find the news that I've been wearing the wrong splint for 4.5 weeks so demoralizing. Just like he couldn't relate to my reaction to a nurse at the Snowmass daycare. She also has de Quervain's, which started when her baby was 3 months old. He is now 14 months. She is still in pain, but shows signs of improvement. Randy was horrified to think that this problem could go as long as 11 months, while I was thrilled to receive some hope of healing.

I can't really explain my pain or my perspective. Maybe I should just lend Randy my sticky mitten.

Sun Dec 21, 2008

Mon Dec 22, 2008

In the beginning, we wondered whether Max would ever come home from the hospital. Then we wondered whether he would crawl. Walk. Talk. I mean really talk. When Speech Therapist Beth recently suggested that we keep quiet and let Max initiate the conversation, many silences ensued.

I tend not to talk much when we travel in Japan, since I know just enough Japanese to get myself in trouble. But when we met up with Akira on one of our trips, he was shocked by how chatty I had become after spending a couple days with my aunts in Fukushima. I didn't necessarily say all that much with them, or stay out of trouble with what I did say, but I came away emboldened.

Snowmass daycare may be Max's Fukushima-aunt experience.

Tue Dec 23, 2008

Kai didn't have those milia. And his babyhood is practically over from a size perspective, since he is now filling some 12-month outfits.

So I've been focusing on his eyes. Randy's are green, mine are brown. We have assumed that Kai's eyes will turn from his current green to brown, since brown genes are dominant and my contribution presumably comes from a brown-brown combination.

But we discover this afternoon that jiji's eyes are a gray-blue. We're not sure exactly what this means for Kai, given that the eye color story turns out to involve more than one gene - and even with the simplistic single-gene story, we wouldn't know whether Kai has inherited brown or gray-blue from me. We probably won't know for months to years, as Kai increases his production of melanin, the dark pigment that will determine the final color of his irises.

I can't believe we didn't know jiji's eye color until now. But our memories are apparently as fickle as a baby's eye color. Auntie Naoko can't believe that none of us remember making this same discovery 15 years ago. This time around, Kai's eyes might just serve as a reminder.

Wed Dec 24, 2008

Thu Dec 25, 2008

The experience of discussing Bob the Builder gift possibilities has provided hours of entertainment for Max over the last few weeks. The DVD that he found in his stocking last night played for less than 5 minutes before Max walked away.

We didn't manage to get a Christmas tree, but can chalk it up to our Snowmass experience being worth the sacrifice.

Max is decidedly more interested in the gifts he receives today - a tricycle hand-me-down from Toshio, construction-themed eating utensils from Auntie Naoko and Uncle Mike, and the longest book ever from baba and jiji. But it's the people he gets to play with who he can't stop talking about during the drive to Toshio's and back.

Kai is happy in everyone's arms. Everyone is happy with rib roast in their bellies.

Still, we would gladly trade the experience of a 3-bag-change Christmas for the possession of a reliable mic-key. This is the part of the g-tube system that goes directly into Max's stomach. When the mic-key wears down after about a month, stomach fluid starts leaking out around it. This wouldn't be a big deal if replacing the mic-key were straightforward, but new ones seem to take a while to break in. The first replacement we tried after returning from Snowmass broke that night - the balloon that gets filled with water to hold the mic-key in the stomach burst. The second replacement still doesn't fit snugly. Leaking stomach fluid means disintegrating ostomy bases and plenty of bag changes.

Otherwise, a very merry experience.

Fri Dec 26, 2008

My family has been playing with baby like he's the world's greatest Christmas present. Max is understandably jealous. He wants all the attention. Not the attention that Kai is getting, it seems, but the attention that Kai is giving.

So Max has started giving baby soft pushes in his swing, saying "'wing low," instead of the usual "'wing high." He gives baby gentle kisses. He shows him how to count to 5, ticking off each of his fingers while holding his hand up to baby's face.

And he sneezes. On Monday, Max's genuine sneeze made Kai giggle. So he followed up with a few fake achoos - each one eliciting more giggles. Kai hasn't found the same humor in sneezes since, but that hasn't stopped Max from trying.

We still need to watch for Max's wild swings and slaps, but his newfound tenderness for Kai feels like one of our greatest gifts this season - and yes, like nothing to sneeze at.

Sun Dec 28, 2008

Mon Dec 29, 2008

Tue Dec 30, 2008

Wed Dec 31, 2008

Thu Jan 1, 2009

We do get enough of a break to rent A Christmas Tale, a dark comedy that makes me realize how little we are thinking about transplant these days (and helps me to stay up with Randy to ring in the New Year). And enough of a break to enjoy freshly-pounded mochi on the pedestrian mall with Nana this afternoon. And to reflect on how good life is at this transition point.

Then Randy rushes home for another bag change.

Fri Jan 2, 2009

Results from the labs we drew Monday didn't get looked at until today, due to holiday lags at the hospital. This morning, we're asked to draw another set of labs to double-check the numbers.

Unfortunately, the labs are consistent. Max's sodium, bicarb, and BUN are all abnormal and continuing to rise. Other numbers are off too, numbers that have been rock solid until now -- chloride and calcium are high, potassium is trending low.

The normal course of action would be to take Max to the ER and check him in for an inpatient stay, adjust his IV inputs, and monitor his labs daily until they resolve. But as usual, we don't want to expose him and his IV line to hospital-grade germs unless absolutely necessary. It's always a hard call to make, and we've been wrong before.

Something seems to be going on with Max's liver and/or kidneys. The high BUN values do not seem to reflect dehydration, since the urine sample that we were finally able to collect, just before Snowmass, was normal. And a wide range of regular measures of liver function - including the enzymes we've been watching closely for over a year - look better than ever, as does Max's absorption of food and water.

Of course, Randy thinks that Max is just fine - that things are simply bouncing around as the liver dramatically heals itself. Max seems to agree on the just-fine part as far as we can tell.

Dr. Soden agrees that things are at least manageable enough for us to follow the normal course of action, but with Max at home. The first adjustment to his IV inputs starts tonight, with his TPN replaced by just a bag of D10 (10% dextrose), with no additives (except for potassium) to try to flush the system, running over 18 hours instead of 12 to maximize the chances of Max benefiting from the fluid instead of peeing out extra, just in case. We'll draw labs at 8 am each of the next three mornings, and the docs will determine how to adjust the IV inputs accordingly. We'll be ready to take Max to the hospital if things get worse instead of better. And we'll try to appreciate the gift that each day turns out to be.

Sat Jan 3, 2009

Max seems to be feeling even better than just-fine. The first sign is how exuberant he is while emptying all of his clothes drawers. Then he gets into a set of his medical supplies, and spills them open into a big pile next to his bed. He later finds a spool of dental floss, swinging it wildly from the unraveling thread. He carries a cereal box around with him and munches from it all afternoon. Just before bed, he seems determined to show off his strength, pushing a heavy chair from room to room to stand on and access more stuff (or "duff," his latest favorite word), and hoisting a large bin of supplies around the house with a proud smile on his face.

In the midst of all the mayhem, his lab results come back. His sodium, chloride, and BUN are still high, but decreasing. All of his other numbers look good, except for potassium, which is now officially low.

Only a couple of brief, odd-sounding crying spells break up the day. Max stays up playing in his room for over an hour after Randy tucks him in.

But at 10:30, Max calls out with the odd-sounding cry again. This time, it's not so brief, there's no obvious cause, and he refuses to calm with Randy - stopping only to plead for water and for his g-tube to be removed. Max never cries at night, unless he is rudely awakened for a bag change or by his baby brother in a hotel room.

We google low potassium while waiting for a call back from the on-call GI doc, since we are supposed to check in with any concerning behavioral changes. "Delirium" jumps out at us - not just for disturbances of sleep, but hyperactivity and disorganized thinking. It puts the giddy energy of Max's day into a new light.

Before we can get too worked up about when low potassium becomes life-threatening, the on-call doc informs us that Max's low levels are far from dangerous, and that the amount added to his D10 IV bag should cover him.

So we can wait to see what tomorrow brings - or at least what it appears to bring.

Sun Jan 4, 2009

The kid: Despite a rough start screaming at 5 am, Max goes on to another happy-bordering-on-manic day. He skips his nap. He chews and swallows more food (cereal, again) this morning than most other weeks combined. He drinks his regular servings of formula and water, but does not plead for them.

The interpretation: The main one seems to be that Max has been dehydrated for at least a few weeks, and now is rehydrated. He is receiving the same amount of IV fluid this weekend as before, but with less sodium and over 18 hours instead of 12. This balance makes him less thirsty, happier, heavier, and hungrier (which might contribute to higher ostomy outputs), and improves-to-normalizes his electrolytes and BUN.

The caveats: The urine sample from December 11 was normal (indicating no dehydration), even though the BUN was elevated across labs drawn on December 1 and 9. And, our tracking of his inputs and ostomy outputs suggests better absorption of fluids during the dehydration window.

The question: Why is this dehydration happening now? His TPN formulation has been stable. Increases to his g-tube feeds or water drinking? Neither type of increase has had any apparent effect on his output, and both inputs were pretty stable this weekend despite the big changes in numbers and kid. Some kind of change in his system, which affects how he processes the TPN? If so, this problem might be addressable by just tweaking the TPN - less sodium, more potassium, hopefully without increases to time on the pump.

The hope: The mysterious change in his system is the dramatic healing of his liver.

Mon Jan 5, 2009

Electrolytes, BUN, and kid all look great (normal) today. But liver enzymes have shot way up, after looking their best ever 2 days ago. Urine production is down, while ostomy output is now twice normal.

Dr. Soden wants to see him. So Randy and Kate take Max to the hospital, while I stay behind to struggle (and fail) in my attempts to not fall off the ferberizing bandwagon with Kai.

The high ostomy output is deemed unrelated to the other swings and symptoms. It might be caused by an otherwise symptomless virus. The treatment will be: 1) to try to control dumping by temporarily reducing enteral inputs (in both the rate and concentration of oral and g-tube formula) and replacing the water in his enteral inputs with a rehydration solution, and 2) to replace some fluid loss by increasing IV fluids from 800 to 1000 cc per day.

All the labs that worsened and then normalized are attributed to changes in how Max is processing his TPN, and resulting dehydration. The solution is to try new formulations of TPN - mostly replacing sodium with potassium. We'll get 3-day batches of supplies rather than 1-week, and will continue to draw daily labs to check whether further tweaks are needed.

We prefer unified stories. But Randy gets only shoulder shrugs when he tries to offer one - something about dramatic liver improvements leading the TPN to act as a diuretic, explaining high urine production, the normal urine sample, and why the recent D10 regimen has led to decreased urine production, which in turn leads to more fluid excretion through the ostomy.

An x-ray rules out an intestinal obstruction as the cause of any problems. Max is happy through the procedure and the whole afternoon at the hospital, which he kicks off by kissing a cute girl in the waiting area.

No one has an explanation for the roller coaster of Max's liver enzymes. This might be yet another story.

Tue Jan 6, 2009

Nana sees all that. This morning, she points out that I haven't left the house since she arrived on New Year's Day. The showering business goes left unsaid. We've also been obsessing over labs the whole time. Today's numbers look okay, we're told (hospital computers are down so we won't get the full report until tomorrow), but BUN is high again. We hope this increase just reflects the effects of heavy ostomy output and will improve as this situation resolves (which it seems to be starting to).

All of our family members have experienced this kind of hosting. But no one else has been subjected to hours upon hours of Kai crying while we try to ignore him, in an attempt to help him learn to soothe himself to sleep. Our bodies are too weary and his is too heavy for carrying and bouncing him to work much longer. Randy's memory is that ferberizing Max was quick and effective. The sleep bible we're following has yet to let us down. Once we started to ignore Kai's crying, we couldn't stop ignoring it without risk of undoing all the work (and tears) put in so far. We find some consolation in the fact that Kai screams for only 35 minutes tonight - the first clear sign of progress after 5 days of ferberizing agony. But we still hope that we really won't ever be worse hosts.

Wed Jan 7, 2009

Max's BUN is now normal, better than ever. We've been gradually increasing his feeds, and his ostomy output seems to be back on track. His chloride is just barely above the high end of normal, and all his other electrolytes are normal. No more lab draws are needed until Monday.

Max scoops heaping spoonfuls of oatmeal, so comically large that he can barely fit them into his mouth. He chews. He swallows. He can't stop talking about eating.

And I feel drunk, having slept for 8 hours straight for the first time since June. Kai cries for only 5 minutes before settling himself for the night tonight. Aside from the wildfires we can see from our foyer, everything seems unbelievably good. I'm ready to be drunk again.

Thu Jan 8, 2009

Kai sleeps 13 hours overnight, with just one interruption after 9 hours, to nurse. His daytime happiness gives the distinct impression of a kid who has not been scarred for life.

Max is also recovering well. Normally, he sits next to Kai in the stroller on our family walks, or insists on riding on Daddy's shoulders. Today, he runs. Down the sidewalk, chasing after leaves that he and Randy let loose in the gusty winds, and up and down anything that looks interesting - steep driveways, curving paths, a skateboarding platform. He rides on Daddy's shoulders for only 2 minutes, more for variety than rest, it seems. He climbs all the steps up Lover's Hill. We stop for milk at the viewpoint - at least Randy and Kai and I stop, while Max runs a lap around the arc of the bench after each of his sips. Then he runs on.

He has been skipping his naps. We're thinking that he's not getting enough exercise in the mornings to tire him out, because he has been hooked up to his pumps for 18 hours/day while we sort out his labs. So he has been doing more reading and painting, less romping. We get the go-ahead this afternoon to cut back to 14 hours, hopefully on our way back to 12.

Tonight, Kai takes an hour to settle himself, but cries hard for only 5 minutes of it again. Max falls asleep during tuck-in. The wildfires have been contained.

Fri Jan 9, 2009

Sat Jan 10, 2009

Kai cries out as I disconnect Max's g-tube this morning. So I finish up, remind Max that he is still connected to his TPN, and tell him that I'll be back with baby. We do some variant of this routine almost every morning.

As I lift Kai from the crib, I hear an odd snapping noise. Max is talking. He sounds very close. I carry Kai out and discover Max standing outside his room, TPN tubing dangling free from his pajamas. It has broken in two (at a fixed junction in the Y-splitter, a point that has never given us problems before) from the force of Max trying to follow me - the other end is pumping TPN onto the floor. I throw Kai onto a pillow, lift Max's tubing to try to stop it from dripping, and clamp the broviac lifeline to his heart. His blood has backed down only a few inches of tubing, so very little has been lost. I disconnect the tubing and flush his broviac with saline and heparin.

Max has generally been careful to not stretch the tubing that runs from his backpack into his body, but lately he has seemed less sensitive to this issue, maybe out of frustration with 18-hr tethered days.

Everything should be fine, this time. But we need to figure out a way to reign Max in (my reprimands that he cannot run when he is connected wake Randy) or to let him loose (if his labs look good Monday, hopefully we can continue to reduce his tethered window, from 14 hours back to 12).

Sun Jan 11, 2009

We should be expert at making these distinctions. But it turned out to be unnecessary. Randy pointed out that Kai - the one doing all the comically violent vomiting on Friday - was very unlikely to have suddenly developed an intestinal obstruction. It seems to have been just a stomach virus (maybe the same one Max had?), which resolved after a Saturday of small feedings every hour.

And so we've experienced regular kid vomit. I'm ready to stay calm now.

Mon Jan 12, 2009

Max's labs look good today - electrolytes and BUN normal, liver enzymes at their regular elevated level. The new TPN formulation seems to be doing the trick, so we will go back down to 12 hour tethers starting tomorrow. And maybe more gentle setting down of Kai.

Tue Jan 13, 2009

Wed Jan 14, 2009

Yesterday, I suggested that we check it when he thought it was time for his milk. He went straight to the dining room table to get it.

This was the reason we bought the watch in the first place. Max gets an ounce of milk each hour, followed by an ounce of water half an hour later. He needs to drink it in small amounts to absorb it. But when he was whining constantly for it (probably when he was dehydrated, we realize now), we felt like we couldn't help but reinforce his whining, since he would eventually always get something afterward. So we switched to checking the clock together as a way to try to show that his drinking schedule was not tied to whining. Max would sit in the kitchen under the clock, watching the big hand. Up, water. Down, milk.

Then Auntie Naoko discovered a vehicle watch - with cars and trucks on the band, and a car that drives around the face on the second hand. It arrived last week.

This evening, Daddy says he is going to take a 5-minute nap. When Max tries to immediately wake him ("Daddy, up, up!"), I tell him we need to wait 5 minutes. He pushes a chair over to the kitchen and retrieves his watch from the counter. So Daddy gets exactly a 5-minute nap, though I'm not sure how restful it was with us sitting next to him, counting down each minute.

Tonight, Max goes to sleep wearing his watch.

Now if only he could tell us what he did with Daddy's watch months ago.

Thu Jan 15, 2009

Until the pain returns.

Yes, I did manage a natural childbirth the second time around, but only because Kai came too quickly for anyone to indulge my pleading for an epidural.

And yes, I have been feeling completely at peace with all the crying that we let Kai do the first week of the new year. He has been settling fabulously since, both at night and for naps, and waking happy. But yesterday, he went back to crying for half an hour before falling asleep for the night. Tonight he cries for over an hour.

The pain is immediately and horribly familiar. What gets me through it is knowing that I'll forget again.

Fri Jan 16, 2009

We're not sure how Max got to this point. Cooking with Nanny Kate, meals with cousin Toshio, sessions with Speech Therapist Beth, wiki tips, less TPN, better hydration, turning 2.5 years old, watching Elmo - who knows? But I didn't believe he would get here until it happened.

We didn't actually manage to record a video last weekend. Time travel can take care of that too.

Sun Jan 18, 2009

Kai is 4 months, 1 week old today - the same age that Max was when we first brought him home. During all this time with Kai - in the mountains, on the bike trails, during seminars, over dinners with family, in bed - I couldn't help but think about Max lying in his hospital crib all that time. The thought still makes my throat seal up, even with the years that have passed and how well Max is doing. I think it would have been all the more unbearable had we known so concretely what we were missing.

And we're lucky that Kai came second.

Mon Jan 19, 2009

Kai smiles a lot.

He has a strong neck.

He is fat.

Just seems like a funny set of things to be able to say about the (second) love and light of our lives. No longer an intruder, but still a bit of a mystery.

Tue Jan 20, 2009

Thu Jan 22, 2009

This timing seems perfect to me now. I feel more on top of things than ever - participating in a productive group meeting this afternoon despite needing to leave twice to nurse Kai, then getting him to settle in his new crib in my office (since the sleeping he has learned to do in his crib at home means that he will no longer sleep on Randy through meetings), and finally turning to work on a low-pressure journal article with a student.

Then Nanny Kate calls to ask where we are. We are supposed to be home by now so that she can go to an appointment.

Before I revel in how on top of things I am, I should probably check my calendar. And get around to signing Kai up for our research studies.

Sat Jan 24, 2009

Sun Jan 25, 2009

Mon Jan 26, 2009

I'm happy after the fact, at least. Randy hides the initial call from me, worrying that it will send me racing down the mountain. Then Nanny Kate calls to coordinate the plan, while I'm in earshot. I race down the mountain.

I'm worried that something has happened to make Max unhappy, maybe something to do with how people reacted to his condition. But that doesn't seem to be the case. Apparently, a daycare kid wanting his parents doesn't require a 1 in 5 million explanation. As Max gets ready to go, the other kids gather around to see him off.

When we picked Max up from Snowmass daycare, he came running out squealing DaddyDaddyDaddyDaddyDaddy! The teachers mentioned that he had talked about Daddy a lot. I wanted to pretend that I was just a friend of Randy's, not the mom so irrelevant that the teachers must have figured Max didn't have one. So the part of me that's happy today is happy because the Copper teachers know better.

They tell Kate that Max was also asking for something they didn't understand: "Gee." Kate is a little happy too.

Tue Jan 27, 2009

As of today, I can start to lift my thumb, hitchhiker-style, while lightly resting a finger on top of it. This was the exercise the physical therapist showed me last week, but then forbade when it immediately caused pain. No pain today, so she gives me the go-ahead. The first real sign of progress after 2.5 months.

Meanwhile, at the hospital, Max gets contrast agent inserted into his g-tube, so that x-rays can be taken to determine the position of the mic-key. The images show that it is inserted high into his stomach. The tilt of the stomach means that this positioning allows for a short mic-key stem, while lower in the stomach is further from the skin and requires a longer mic-key stem. The doctor reading the scans suggests that the required length for Max is 1.0 cm. That's the size he has - the size he has had since his first mic-key was placed at 3 weeks of age.

It's good to hear we've been using the right size, but bad to have no sense of how to move past our struggles with this system.

Then we get a voice message tonight, saying that the doctor thinks a 1.2 length might be better. Who knows if it will work. But just having something new to try counts as progress.

Wed Jan 28, 2009

Fri Jan 30, 2009

Sun Feb 1, 2009

Mon Feb 2, 2009

After nursing Kai this morning, I come in to find Max's tubes stretched tightly around his big parking garage toy. The safety pin that secures his tubes to his clothing has come out, and the taut tubing holds the pin so that it points straight up toward Max. The first line of defense against his lifelines pulling out from his skin is gone.

I close the safety pin to prevent it from jabbing Max. I grab the tubes and try to provide as much slack as I can on Max's end, while loosening and untangling the other end from around his big toy. He must have circled the toy, become ensnared by it, and then pulled the lines tighter as he tried to break free. I check the insertion points of the lines into his skin. They are intact, with the critical broviac line to his heart still protected by its fortress of dressings and tape. I move the toy beyond the radius of Max's lines.

This is nothing like the time Max bled out from his broken line for hours overnight. But I feel the same odd calm in seeing him through the event, followed by falling apart as the day goes on and I confront thoughts about all the things that could happen with our kids' lives in our hands.

Randy doesn't say much to reassure me. Maybe it has something to do with my pronouncement that nobody can say the right thing today. When I call him on it, he says he's not bothering because he knows that everything will be fine tomorrow. It's not the right thing to say - it couldn't be. But I know it's true.

Tue Feb 3, 2009

All of his therapists - speech, occupational, and physical - come to our home for sessions. But when he turns 3 this May, any such support will come through the Boulder Valley school system. Five of their developmental specialists assess Max over the course of an hour and a half this afternoon.

I try not to be one of THOSE parents. But Max has missed his nap, and may not be focusing. When the group confers over whether Max reliably comprehended the words "big" and "small" on their test, I explain that he uses these terms with me many times a day. Whenever I pour Max's formula, I ask whether he wants a big sip or a small sip. He always says "bita, bita" (big). But then I ask whether he wants a big sip later, or a small sip now. He always goes with "mall, now" - refusing to delay gratification, like most preschoolers (and perhaps like one of his parents). The team nods, and continues with their tests. They conclude that Max does indeed know big and small.

And that he is remarkably good at pouring. He doles out his 5cc sips of formula from his bottle into his cup during a testing break. Then he goes back to playing game after game - sorting shapes, putting colorful bean bags into the same color rings, walking on a low beam, naming pictures. I am mostly successful at restraining myself from pointing out parallels to tasks we run in my research lab. Max stays remarkably on task, only occasionally reminding us that he wants to swing high on the playground that we passed on our way in and trying to break through the flimsy divider walls to a toy area.

We won't get their full assessment and recommendation for a few weeks. But their preliminary conclusion: Max looks great. They note delays in language production, and minor delays in gross motor skills. But both are expected, and these skills are taking off. Max ran around the zoo for hours Saturday. Last night, our friend Michael described him as sounding like intermediate NETtalk, the artificial intelligence system that learns to pronounce English text. Randy has been noting how Max's phonological loop has kicked in. Just geeky ways of capturing how fun it is to have conversations with him these days. So we are not worried.

The team thinks that Max will likely fail to qualify for any special preschool support for cognitive, motor, or social skills. A failure to celebrate.

Thu Feb 5, 2009

Robin's doctors in the Netherlands thought that it was too late for Omegaven, and his liver would need to be transplanted. But his mother informs me this morning that his lab results have shown dramatic improvement. The doctors say that liver transplant is not needed after all.

Sun Feb 8, 2009

Randy and I walk home from brunch this afternoon, with Max and Kai squeezed into the stroller. Kai lays his head down against Max's arm and falls asleep almost immediately. Max stays awake. He does not flinch or protest.

Tue Feb 10, 2009

Wed Feb 11, 2009

Thu Feb 12, 2009

Sun Feb 15, 2009

Max is getting us out of the house in a seriously fun way. Two weekends ago, I couldn't imagine anything better than watching his glee as we boarded the zoo train and chugged out of the station. Last weekend, Randy and I chased after him through the Museum of Nature and Science.

This week, he has been asking about hippos. They are missing from his Encyclopedia of Animals from Aunt Katie, and the only facts that Randy and I have mustered are that they are big and fat. And fast, Max claims. Randy and I think they are slow, but we're not sure. So we have been talking about going to the library to find out.

Randy and I sit against a window there this afternoon, thumbing through a collection of books, that are, as Max puts it, "all heepo." HE can apparently wait to learn more. Another boy announces that he knows where the dinosaur books are, and Max runs off with him. At his speed of considerably less than 30 miles per hour, not nearly as fast as a hippo, it turns out.

Mon Feb 16, 2009

Tue Feb 17, 2009

Then I ask him what William wants more than anything in the world. Max is flipping through the book, William's Doll, a gift from NP Kristin when he was still in the hospital. The title character is given sports equipment and vehicles, but what he really wants is a doll. The whole story revolves around this fact.

Max doesn't need to think long before declaring what William really wants: a choo-choo.

I can relate. I can't help but think that what Max really wants is conversations like this.

Wed Feb 18, 2009

When I called the mic-key manufacturer last month to describe the problems we were having with leaking from Max's stomach, the representative was shocked that Max has had the same sized, 1.0 cm mic-key from the start (at 3 weeks old), and has not been measured for a new one since. She said that measuring should be done a couple times a year.

This would normally happen in the surgery department. Someone deflates the balloon that holds the mic-key in place, removes the mic-key, inserts a special measuring mic-key with a long, marked stem into the hole in the stomach, inflates the balloon, and determines how long the stem of the mic-key should be.

On Max's last visit to the hospital, they took x-rays to determine the positioning of the mic-key in his stomach. Those images seemed like enough to confirm - even without the special measuring mic-key - that the 1.0 cm mic-key was the correct size. Until the doctor called back later to suggest that a 1.2 might work better.

The 1.2 turned out to be even more leaky, so we went back to the 1.0. Our next step is to try a new brand. The mic-key brand has worked off and on, and the AMT-mini didn't seem any better - next up is the Nutriport, which we have heard fits some kids well when nothing else does. But when we tried to order one, we couldn't get a 1.0 because Max's prescription had changed to a 1.2. No one was willing to change it back over the phone, because the doctor thought an even longer one might be needed to fix the leaking.

So Max goes to the hospital this afternoon for his second measurement, this time of the traditional marked-mic-key variety. The surgical assistant who does the measuring is the same one who gave us the stick-in-sand advice back in October. She is impressed with how much tighter the seal is around the mic-key, and encourages us to keep doing what we're doing to stabilize it. Max's skin and stomach lining should continue to grow in to improve the seal around it.

The measuring stick shows that the length of Max's mic-key, after all these years, should be: 1.0 cm. Still, we'll try not to violate maxims quite so egregiously in the future.

Thu Feb 19, 2009

Fri Feb 20, 2009

Tonight, Randy and I watch Nanny Kate steal the show in The Two Noble Kinsmen, Shakespeare's last (and least-produced) play. And we witness the tragic unraveling of idealized love, doomed to fail.

So maybe it's best if I come clean. Max's sweet profession this morning came only after Nanny Kate said, "Max, do you want to tell mama something? Remember that thing I told you that you could say?"

Sat Feb 21, 2009

Sun Feb 22, 2009

Mon Feb 23, 2009

Tue Feb 24, 2009

Max has my last name. We started with Max, and liked the rock-star/superhero sound of Max Munakata. Kai's middle name is derived from my mom's maiden name, though in a manner that is nonsensical to Japanese speakers and almost unrecognizable to my mom's sisters.

The kids are actually mine biologically too. But you wouldn't know it. A couple of friends have tried to reassure me that they see some resemblance. But Max's blunt assessment rings more true to me. He has stuck to his story since I first asked him a couple months ago: Kai looks like Daddy. Max looks like Nanny Kate.

Wed Feb 25, 2009

Sun Mar 1, 2009

After replacing Max's mic-key with a Nutriport Wednesday evening, we checked his dressings in disbelief over the next 24 hours. The wicking foam and IV gauze we place around the device, and the layers of tissues that we stuff in his shirt: all completely dry. Randy emailed Max's team to thank them for restoring our quality of life.

But since then, stomach acid has started leaking out around the device again, getting worse and worse, until today, less than 4 days in, the balloon holding the device in place bursts. Not dangerous, but wet and messy and decidedly un-celebratory during our attempt to enjoy a birthday brunch out.

We have no idea why these balloons, which used to last months, are now lasting only days. The Nutriport balloon is supposed to be the most durable.

We do get to enjoy nicer parts to the day: Max singing happy birthday to Randy this morning, happy hour with cousin Toshio's family. But I'd still like to give Randy one more gift, belatedly, of somehow getting this g-tube system to work.

Thu Mar 5, 2009

It's hard to avoid when dealing with day-to-day matters like leaking stomach contents. But one of the things that Max's assessment team really liked was how well he engages in rich pretend play. Hand him a pretend object, open a whole new world.

This morning, Max washes my hair. He takes care to not spill his overly full cups of water before pouring them on my head, both before and after pumping out some shampoo and giving a good scrub. All with just his empty hands.

Last weekend, we cooked a full pasta meal on his bed. Then Max took his curved hand, held it under the "faucet," and filled his "cup." He offered it to Curious George, who drank too quickly. The water was leaking, Max explained, out of George's g-tube. A little reality intruding into our fantastic new world of pretend.

Fri Mar 6, 2009

At our follow-up meeting with Max's assessment team last week, we learned that he did fail to qualify for any special preschool support for cognitive or social skills, as we expected. But his team decided to list him as a candidate for both speech and motor therapy. These would start up along with preschool in the fall.

The physical therapist indicated that she was on the fence about the motor recommendation. She suspects that a therapist might very well look at Max in the fall and ask, "Why did they send him here?" Max looks good overall, but shows somewhat limited use of his abdominal muscles -- in how he gets up to stand from sitting, for example. We've never known how much of this is just his way of working around all the equipment on his abdomen, but these habits may be contributing to relative weakness too. Still, he's getting stronger and stronger, and it's hard to know where his skills will be in 6 months.

His language production is also a quickly moving target. The speech therapist noted that their observations from just 3 weeks prior might no longer apply. At that time, they documented him saying "opme" for "open." Now he is proudly articulating "open." At that time, he was saying "choo choo" for train. The day after our follow-up meeting, he started saying "train set." He didn't know the word for "cookie" when they assessed him, instead saying "eat" when shown a picture of a kid with a cookie. Randy realized later that Max has never experienced cookies.

We think a speech therapist might also see Max in the fall and wonder why he was referred for services.

But overall, the assessment felt just right. Out of the apparent chaos of the evaluation session, and checklist after checklist of skills, each member of the team was able to construct a summary that seemed to really capture Max. Their bottom line: Max is an incredibly social kid who is right on track cognitively and will thrive with friends in a preschool setting.

We see him taking off in every possible way. But the services will be there if he needs them.

Sat Mar 7, 2009

Sun Mar 8, 2009

Tue Mar 10, 2009

Wed Mar 11, 2009

Fri Mar 13, 2009

Sat Mar 14, 2009

Sun Mar 15, 2009

Fuzzy wasn't sure about me entering their lives. She destroyed my first gift to Randy, a jade plant. But she came around over the years. She has had 19 good ones. Six of them were spent in Pittsburgh, first with Randy and a few different girlfriends in his Shadyside bachelor pad, then racing around our 4-bedroom Squirrel Hill apartment and prowling around the thickets behind it. She patrolled the dashboard of Randy's Mazda (and then our joint Saturn, which is still going strong), during our regular drives to Cleveland to see my mom and dad, long before they would become baba and jiji. She sat with us in the U-Haul as we headed to Boston, where she spent the year gurgling at pigeons from our tiny Beacon Hill apartment, and struggling against our well-intentioned attempts to take her on walks out on the cobblestone streets. She squeezed into the Saturn for our move to Colorado. All of her years since have been spent in Boulder - seven of them in our first house, which backed onto a park that we could never lure her out to, and five years where we are now.

Our friend Michael taunted us by saying that Fuzzy would never forgive us for the stress of that move. But after a few weeks of cowering upon entering the main room, she and Neko seemed to realize that they would not be attacked through its tall windows, and they settled in quite happily. I think she also forgave us for taking Neko in when he was abandoned on the streets of Pittsburgh. She was the smart one -- the one who after our "walks" would trot straight up the two flights of stairs to our Beacon Hill apartment. He was the one with good character -- the one who would go up one flight of stairs and sit meowing outside the apartment below ours. I don't know if she has ever forgiven us for having kids. Randy likes to think that she somehow understands.

Fuzzy has not been eating much for several months, even with Randy's heroic efforts to try every possible cat food and keep track of which ones seem most promising. She stopped eating altogether a couple weeks ago. Now she is struggling to walk. We know it is time. We say a long goodbye this afternoon, while she rests on a soft quilted pad made by baba. We watch her tail. When she starts to flick it, we back off from petting her, honoring her strict limits, to the end, on how much affection she is willing to give or receive. When she doled out or tolerated any, it meant something. The vet comes to our home. She knows that Chloe goes by Fuzzy. She injects her in the leg while Randy and I hold her. Fuzzy goes quickly and peacefully.

She was just the right kind of kitty.

Mon Mar 16, 2009

Tue Mar 17, 2009

Randy thinks that Max's latest favorite phrase is more relevant: "all by self." That's how he wants to hold baby, go up and down stairs, and pour his formula.

Today's numbers are spectacular. Electrolytes are normal, BUN is great, liver enzymes are still high but look their best ever. (We don't need to scroll down the email of results to know that this means his hematocrit will be low -- and it's just on the low side of normal.)

Randy may be right. Max is just being an almost-3-year-old.

Wed Mar 18, 2009

Who is the silliest? Max

Who is the cutest? baby Kai

Who is the dirtiest? Mommy (I'd like to think that his answer has to do with our hair-washing ritual.)

Who is the smartest? Max

Who is the biggest? Daddy

Who is the loudest? Max (AAAAAIIIIEE, he demonstrates. Daddy loud, he adds.)

Who is the quietest? mama, he whispers.

Who is the hungriest? baby Kai

Who is the nicest? Kate

Sat Mar 21, 2009

He and baba arrived on Thursday. I have been telling them about my student's recent discovery that kids are reactive rather than proactive. They fail to plan for the future, but they don't just live in the present -- they call up the past when they need it. At least that's what we've found in 3-year-olds, while 8-year-olds proactively plan for the future more like adults.

Max knows that his birthday and Toshio's are coming up in May, and that he will be 3. Toshio will be 8. Perfect subjects.

The cousins race up and down a ramp on the restaurant patio where we meet for dinner. Randy counts off the start the same way each time: 3, 2, 1, Go! Toshio takes off at the sound of Go, or sometimes false starts just before it, clearly anticipating. He tries to return to our table after each race, but Max eagerly pulls him out for another one. Despite his enthusiasm, across 20 or so races, Max never false starts. He never even starts at the sound of Go. Each time, he seems to need to hear the word to retrieve the fact that he should be going.

I don't think he's making any birthday plans. But we'd better, or when the day arrives, Max will let us know what we should have been doing.

Mon Mar 23, 2009

His stomach pH tests normal, but his stool (which we've brought in because we suspected) tests positive for blood. We'll treat him with sucralfate, in case he has an ulcer. This could explain why his Nutriport balloons have been popping. Perhaps his stomach pH is normal now only because he took his daily Omeprazole antacid relatively recently, and also drank milk soon before the test. We'll increase the Omeprazole dose and split it across the day to try to maximize its effectiveness.

On our way out, we run into Ayelet Talmi. She hasn't seen Max since Randy and I were trying to figure out how to make his hospital room -- the only environment he had ever really known -- as much like a home as possible. We talk about Boston and Omegaven, Max and Kai and Ayelet's kids, balancing family and work. When Max isn't running around the cafeteria, he entertains us by declaring that Mommy is now the cutest, then responding to my squeal of delight by changing his answer to Daddy. Ayelet's amazement in seeing Max after all this time, with no hint of where he was back then, reminds us of what a miracle he is.

Wed Mar 25, 2009

He's shocked to discover that it's Daddy in the kitchen. Randy has woken at the normal person's equivalent of 4:30 am (given that he stays up until 2am to do Max's cares). A rare event, but worth it for a day at Vail, and feasible with Randy falling asleep in the car to bright city sunshine and waking to a gray mountain blizzard. And with Kate putting in a long day at home with the boys.

It feels like old times out on the powdery slopes with grad students. Except for the pumping I do during the drive home, which hasn't been necessary since our exhausted drives back from visiting Max in the hospital. Today's is a much better kind of exhaustion. All the more so with how eagerly our boys welcome us home, to what always feels like a wonderfully full house to us.

Thu Mar 26, 2009

Fri Mar 27, 2009

I don't mean to take pleasure in Kai's pain. But I find it immensely rewarding how he snuggles into me and calms in my arms. And when I come home and tell Nanny Kate about Kai's precocious stranger anxiety, and about my reaction, she is relieved to hear that she is not alone in her schadenfreude. She's thrilled to know that Kai means it when he squeals and smiles at her every chance he gets.

Sun Mar 29, 2009