Maxwell Charles Munakata
A short gut, a long road, a full life.
(Newest entries are at the bottom -- dates can be clicked on the left.)
Wed May 28, 2008
"First kids make you old, then they make you young." I picture
whoever made this observation being chased around by a child like Max,
a kid squealing at the unbelievable fun of it all.
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
- 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
many kids he thinks we should have.
- 4 P-A-R-Ks within walking distance where Max swings and slides his afternoons away.
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
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.
- 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.
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.
Thu May 29, 2008
We packed our suitcases for a 3-day
stay, just in case.
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
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
Come celebrate with us!
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
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
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
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
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
"Beat the Brogans." We heard that this was a mantra among parents on
the 8 West wing of Children's Boston -- parents who wanted their
children to do better than Ellie, and perhaps wanted themselves to do
better than her parents.
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
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
Max and I head down the street to hand out party invitations. It's a short
street. But half an hour later, we have delivered only one
invitation, to Ollie. Max
pulls me by the hand to Ollie's house, signs for me to knock, and
walks right in when the front door is opened. He and Ollie greet each
other by way of comparing and trading their trucks. Ollie brings Max
a truck book and shows him how to work his bubble blower. Max settles
in with Ollie's offerings, his dog, and his unusually obliging
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
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
Max falls to the ground in front of Ollie's house and won't budge.
I may need to deliver our other invitations without him.
Wed Jun 4, 2008
It doesn't snow when it's warm. That's what I've been telling Max for
weeks, because each time I open his shades to a cloudy morning, he
asks for snow. So I have some explaining to do when our yard gets
blanketed in white this evening. It's a dramatic storm, at least for
Randy and me. Max concentrates on his photo album from Nana
throughout the torrent, calmly turning pages while Randy and I exclaim
"Hail!" over the din. We venture out after the storm passes to
slip-slide on pebbles of
ice in June.
Thu Jun 5, 2008
Inviting people to a party has never been so exhausting. But Max is
now thrilled to do it.
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
Fri Jun 6, 2008
Maternity wear featuring vehicles doesn't seem to be in style this
season. If anyone else is struggling, rest assured that we will have
backup vehicular adornments available at the party!
Sat Jun 7, 2008
Randy brought home a cold from our 14 hours at the hospital. Then
he passed it on to Max (who passed it on to Nanny Kate). I'm hoping
they'll call it even and
declare a truce. At least everyone has recovered in time for
Sun Jun 8, 2008
I don't want to go to sleep tonight. I don't want to change out of my
shirt with vehicle buttons mounting my hill of a belly.
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
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
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
Now I really wish I were still savoring yesterday.
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
If you give a lot of advice, I guess some of it is bound to be
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
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
"Bo this, Miracle that." This is our latest catchphrase, from Bo's blog, in reference to how
repetitious our parental proclamations might sound, but how new the
miracles feel each day. We just can't get over how endlessly, freshly
cute Max is. "You just never know"
and "There are many factors" may win for the most universally
applicable mantras. But for us, "Max this, Adorable that" isn't far
Sat Jun 14, 2008
You can have too much of a good thing.
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
It's hard to put into words what a great dad Randy is. Maybe I should
leave it to him.
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
Tue Jun 17, 2008
We pause in the middle of singing "Happy Birthday" over the phone
tonight, so Max can fill in jiji's name. Max fills in his own name
instead. He had the same confusion at Kai's first birthday party last
We do celebrate Max every day. I suppose this might get a little
Wed Jun 18, 2008
Randy claims that Max couldn't possibly think a mouse is growing in my
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
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
I'm not prepared for fighting boys. At the park this afternoon, Randy
tries to take Max's plane from him. Max protests, gesturing for Dada
to play with one of his other planes instead. Randy explains that
he's tired of flying those, and really wants to fly Max's. I try not
to get involved, but Max eventually decides that he wants mama to fly
his plane. Both boys seem pretty happy with this resolution. I hope
this is good practice for something.
Sun Jun 22, 2008
One of my graduate advisors once lamented living in an area where
neighbors talk to each other. Back then, I could relate -- I had my
research and our Camelot circle of
friends, and no time for much else.
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
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
Max falls at the pedestrian mall this afternoon. He is crying in the
background when Nanny Kate calls to describe the goose-egg bump that
is forming behind his left ear.
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
Fri Jun 27, 2008
All work and no play makes me a dull host. But Max makes up for it.
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
"Remember your primary purpose." This is how jiji and baba would sign
off on our phone calls when my sisters and I were in college, and how
they would respond to our updates about non-academic activities. Our
ready response to their first-generation, parental reminders:
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
It was a sweet thought, the three of us being equally prepared for
what's to come.
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
Tue Ju1 1, 2008
Max may just be messing with Dada. I can't blame him.
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
Randy drew Max's blood a week ago. We are now officially
responsible for his regular labs.
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
Fri Ju1 4, 2008
Max sleeps through fireworks, spirited debates about the merits of key
lime pie, and ping-pong and foosball rivalries played out below his
bedroom until after midnight. The party we host for our labs reminds
us of old times. The trick was probably taking Max to an earlier
party, between Randy's wake-up and Max's nap -- like threading the eye
of a needle. The host is the doctor who delivered Max. He is
impressed with one dramatic flight of "Max's" remote-control plane, as
it circles higher and higher, hundreds of yards into the air, and then
out of sight. Randy and Max comb the neighborhood for it. When they
return much later, the group cheers at the sight of Max holding a
plane. But it's his other plane, not the one that was lost. We end
up with no plane found, and no real nap taken -- but no problems
celebrating the 4th.
Mon Ju1 7, 2008
A colleague in the Business School was astonished to learn that Randy
and I are a couple. "He's so BIG!" was how she explained her
shock. "And LOUD!" was her follow-up.
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 good news is that the on-call surgeon today is Dr. Partrick. He
has performed 6 of Max's 7 surgeries. Make that 7 of 8.
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
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
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
There's more good news. Not just the silver linings that Randy and I
convinced ourselves of while driving to the hospital yesterday. We
came up with three things then. First, Max might have eventually
needed a new broviac anyway, one with a longer line to his heart to
accommodate his growth, and a longer line out from the site to
accommodate repairs. Second, we haven't had much luck treating
irritation of his skin around the broviac site over the last few
months -- we might be better off starting fresh. (In fact, the
irritation might have contributed to the broviac coming out. Randy
lifted the fortress of protective dressings to apply antibiotic to the
site a couple times in the days preceding the incident. We normally
apply antibiotic only between dressings. This new procedure might
have weakened the fortress, allowing something (or Max) to yank the
line.) Third, a potential chest placement could have advantages over
a femoral line, like being out of the way for potty training.
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
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
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
When Randy and I were taken to see Max after his broviac surgery, the nurse by
his side announced,"See, here's your Dada!" I felt a little
irrelevant. She explained that Max had been calling for Dada from the
time he woke. That didn't really help.
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
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
Awake or asleep, there's still nothing quite like hearing Max call for
Sun Ju1 13, 2008
Grandpa has never flown a helicopter. Otherwise, Max is pretty
impressed with him and the fantasy weekend he brings during a layover
in Denver. We fly planes at the park, then watch the real things at
the Boulder airport. We tell Max about how Grandpa once flew his
plane into this airport to visit us, and has flown gliders like the
ones we see towed up and returning solo. I find it surprisingly
entertaining to watch planes taking off and landing, but my pleasure
might reflect the company of 3 generations of fascinated
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
does a great job creating a kid-friendly environment. Max points
excitedly as soon as he sees the building this afternoon, and commands
us to GO during a pause for traffic. But we're not in any rush today
-- just Max's routine checkup.
He continues to grow well, staying beautifully on track at the 50th
percentile for weight, despite decreases in his TPN
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
Yesterday, Nurse Fidanza suggested that the irritation of Max's skin
around the old broviac might have expelled the line from the site.
This is at once reassuring (this would explain why we had no idea how it happened) and
concerning (that the body could expel the line from within, no matter
how strong the fortress to the outside). Hopefully we can keep the
skin happier around this site. All looks good tonight during Max's
first bath and second dressing change since the surgery.
Thu Ju1 17, 2008
An allergist told us last spring that Max could have an anaphylactic reaction to milk, one
where he might stop breathing.
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
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
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
Someone thinks our yard is already kid-friendly. She has been
dropping off her two babies there in the morning, then coming back for
them in the afternoon. Max climbs on the couch to watch the tiniest
deer we've ever seen sitting in the shade of a tree.
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 haven't found our creek
threshold. Max and Dada bike there this morning, with Sophie. She's the recipient of
Max's Burley bike trailer (a hand-me-down from Toshio), since Max has
moved on to a Chariot that will also fit baby brother. Sophie seems
mostly happy to receive the hand-me-down, once her Daddy gets
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
Sun Ju1 20, 2008
Max is a bad liar.
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
My finger gets slammed between a swinging door and Randy's back this
afternoon. Nothing serious, but I double over and whimper during the
few seconds of surprisingly intense pain, like with a toe stub. When
I stand back up, Max's lip is quivering. His eyes show grave concern.
I've thought to shield him from anger and sadness, but pain hasn't
come up before. He hangs in this precarious state as I tell him that
mama is fine, dada kisses my finger to make it better, and we review
how the accident happened -- a technique that reassures Max after his
tumbles. He doesn't seem convinced, but he calms instead of
Not that he needed to, but Max has made clear that he can skip his
baby brother's delivery.
Sat Ju1 26, 2008
We're on course to get flagged for monitoring by social services. At
least, that's what we've heard happens if you bring your newborn baby home
unnamed, since this apparently signals potential parenting
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
What a difference 19 days make.
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
Wed Ju1 30, 2008
Our kids' lives are
in our hands.
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
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
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 don't think it's the pregnancy hormones, or Max's 1 in 5 million
condition. I'm guessing that sorting through old baby things is a
weepy affair under most circumstances. Max's newborn onesies still
seem implausibly small to fit anyone, but implausibly big to fit
something that will emerge from me. Max signs "mouse" while I sort through
them this morning. When I reply by signing "baby," he gives a firm
"No" and sticks to his story.
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
snap-up footed pajamas he wore during his Learjet flights to and
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
Expertise is hard to teach -- it just doesn't translate into verbal
instructions. So after our years of ostomy bag changes and
competitive development of new techniques, Randy and I are surprised
to see who's holding the record for long-lasting bags. Nanny Kate has
only been at this a few short months, as part of our preparation for
the chaos of a new baby. But her bag is in its fourth day when she
changes it out today -- a typical window for her, a dream for us. We
wish she could pass down her expertise.
Sat Aug 2, 2008
We've been hearing a lot about
Talulah Does The Hula From Hawaii. She's the 9-year-old girl
whose parents lost custody after a judge decided that her name was
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
Max is gradually saying more, but can still get by with surprisingly
little. One word is enough during this week's visit from our friend
Michael and his girlfriend
Mascha. Each time Max sees Michael sitting at his laptop, he walks
over, holds out his hand for Michael's, and says "ball" -- to request
the game Michael introduced the day he arrived. Michael obliges by
trying to drop ping pong balls into a tiny hole at the top of a tall
toy with a spiral ramp. Max giggles hysterically at every miss.
Successes evoke no reaction at all, or an occasional "yay." Just
enough to keep the game going.
Mon Aug 4, 2008
Michael asks why Max cries during today's lab draw. Randy is drawing his blood from
the chest broviac for the first time. But all goes smoothly -- Max
cries only when Woody gets
relegated to a shelf, during a scene in the video that helps to keep
Max still for the procedure.
Tue Aug 5, 2008
We feel like we can almost take our pick -- improved hematocrit and
worse liver enzymes, or improved liver enzymes and worse hematocrit.
Today's lab report brings the latter, like the last labs. But Max's hematocrit
is still in the normal range, and his liver enzymes are still
elevated. No immediate plans to change anything -- just the longterm
goal of continuing to increase feeds and decrease TPN.
Wed Aug 6, 2008
We're used to rejection. Revising and resubmitting papers and
proposals is an integral part of academic life. But facing Max's
rejections is a different matter.
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
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
Thu Aug 7, 2008
The parents of one of my students panicked at the last moment. As a
result, her last name is Snyder-Schneider.
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
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
I haven't needed to wear my vehicles shirt from
Max's birthday party lately. My secret pleasure has been pulling it
out whenever I'd like a little extra attention. Like after grocery
store outings. Inevitably, Randy leaves the check-out line to grab a
forgotten item. The cashier watches Max call for Dada through the
entire separation, and comments about how this kid sure loves his Dad.
I'll put on my birthday shirt soon after, and revel in how much Max
wants to hang out with me.
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
Mon Aug 11, 2008
Christian's mom has a way of
reassuring me. Our major
landscaping project finally gets underway this morning. It feels
like our baby could arrive any day now. Across the country, the
dry-wallers start working on the nursery for Christian's sibling.
Christian's mom is due 10 days before me.
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
Max thinks Dada made the
right call on proceeding with the landscaping project.
Wed Aug 13, 2008
I haven't felt this nervous doing Max's cares in a long time. But
today it's in front of an audience: Nurse Whitney, Nurse Jeannie, and
NP Kristin. They're not here
to judge, and in fact are very appreciative of our track record and
all the work we've put into the care
Max's procedures. They'll use it as a reference in helping us out
around the arrival of Max's brother. Max seems to appreciate all
their attention as much as we do.
Thu Aug 14, 2008
If you want clear-cut answers, don't talk to an allergist.
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
We've been wondering how we'd deal with a difficult kid.
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
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
One year has passed since Max last spent a night in the
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
Plenty more weekends for them to work that out.
Tue Aug 19, 2008
When I bare my soul to Randy tonight, he suggests, "You should write
down these thoughts so you can laugh at them later."
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
Wed Aug 20, 2008
I'm 110% pregnant. That was the assessment of one of Randy's
students last week.
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
Each day has been a little better than the one before. Max seems to
be back to sleeping easily through the night and through his naps. We
have no idea what the grueling week of crying in his crib was about.
Fri Aug 22, 2008
Talk about gray areas. When the allergist called with Max's blood
results this Tuesday, we got the green light on 5 more foods. We
started with green beans two days ago. No problems. Tonight we try
hummus. Max's recent skin
test was negative, which means a
95% chance that he is not allergic to it.
Randy dabs some into Max's mouth. Max pulls it out and spreads it
around his cheek and eyes. He cries as his face turns red and puffy,
and welts pop out on his skin. A Benadryl strip gradually brings
things under control.
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
People seem inclined to divulge things to women who are 110% pregnant.
While we're out at dinner with Toshio and family tonight, a woman at a
nearby table informs us that her baby was in a breech position (head
up). By the time she got to the hospital, the baby's foot was
sticking out of her.
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
Our house days before Max
was born. And now.
Mon Aug 25, 2008
I wasn't expecting to show up for my "final" OB appointment today.
But not only do I waddle in for it uneventfully, I'm asked to schedule
another appointment for next week.
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
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
Max lined up two cars on the couch last evening, and said "Doh." He
added another car to the pair, and said "Dee." I'm amazed. It's not
surprising that he can count at this age -- "wan, doh, dee, foh." But
are supposed to take months longer to map these count terms onto
actual quantities. They'll count high but be stymied by a simple
request to "Give me two" from a set of items, or to "Point to three"
when given the choice of a card with three items on it and another
card with four items on it.
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
Wed Aug 27, 2008
Randy has been wondering how much cognitive control women have over
when they go into labor.
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
Despite my apprehensions, I
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
Kids aren't the hard part of doing developmental research -- meddling
parents are. That's what I was told when I got started in this
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,
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..."
Fri Aug 29, 2008
I can just picture it. Max's latest twist in swinging is to shut his
eyes through several arcs. He flies back and forth, his face soaking
in the sun that his eyes shut out, his smile broadening with the
heightened vestibular sensations.
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
Every morning, when Max holds up his arms to be lifted from his crib,
I ask if he would like to touch my belly. Every morning, he recoils,
says "No," then lifts his arms higher to clarify his intent.
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
If you can't beat 'em, join
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
Baba and Naoko have been preparing feast after feast. The least I
could do is produce a baby while they're here. But we have pretty
much given up on Max's brother arriving before baba departs this week.
Luckily, this means that she has scheduled another trip here later
Tue Sep 2, 2008
I hate being late. So I'm gradually warming to the idea that the
Munakata (Max) arrived early, while the O'Reilly (X) may arrive late. Randy and I
always point fingers when we show up well past start time. (For the
record, when our schedules are independent, generally Randy is late
and I'm on time. He doesn't contest the data -- he just claims they
are somehow misleading.)
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
Max's hematocrit has been in the
normal range all year. It's up with today's lab report. This improvement normally comes along
with worsening of liver enzymes. And that's what I see in the
report - two out of three liver enzyme measures have worsened. Of
course, Randy sees improvement - the one liver enzyme measure that has
improved shows the most dramatic change.
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
We haven't picked a name for Max's brother, but we've picked a
birthdate: September 13th. Possibly the 14th. At least, that's the
latest X will be born. In yet another "final" OB
appointment yesterday, we agreed that I would be induced on the
13th if X hasn't come by then.
Fri Sep 5, 2008
At least everyone else is ready.
When my contractions start tonight, Randy seems excited and, perhaps
more than anything, relieved. Naoko calmly reviews the delivery
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
Max is becoming a better
liar. And he's doing it using count terms. Best of all, he's
doing it to get more food.
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
Before traveling, I often dream that the trip has already happened,
and wonder why I can't remember much about it.
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
I almost fall asleep listening to X's heartbeat this afternoon.
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
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
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
I handle a breakage at the start of the day much better than one at
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
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
In retrospect, I'm glad we had no idea that:
We knew none of this, so the day unfolded like this:
- 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"
- 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
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
Fri Sep 12, 2008
Plenty of time wasn't what we
needed to come up with a name
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
Randy keeps reminding me that we are supposed to be more relaxed with
the second kid. Still, I can't help but flinch this afternoon when
the home visit nurse determines that Kai is losing weight and his
bilirubin is rising. These were life-threatening issues for Max. The
nurse reminds us that these trends are normal for typically-developing
kids and should continue for another day or two, until the milk supply
comes in fully.
Sun Sep 14, 2008
Max didn't exactly welcome Kai home with open arms. He seemed far
more interested in his ice drink. Further encouragement to check out
his baby brother only led to the slap-petting he usually reserves for
the kitties. Randy thought his reaction was shaped by guilt, from
having had just a bit too much fun during our 34 hours apart, with
Nanny Kate, Nurse Gail, and a
last-minute fill-in from our friend Jan.
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
Seems like being a big brother might help Max appreciate having a
Mon Sep 15, 2008
I'm back to cutely pregnant. I
look like I'm around 6 months.
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
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
We didn't realize that we needed to heal.
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
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
While Kate is holding Max this afternoon, he reaches for me. I take
him in my arms, but need to lower him to the ground immediately. I
explain to him that I am getting stronger and stronger each day
(feasting on baba's iron-rich lunches and dinners), and soon will be
strong enough to carry him again. He ponders this idea, then locks me
in a sweet embrace, which he follows up with a kiss.
Fri Sep 19, 2008
We can still take care of Max.
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
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)
Sat Sep 20, 2008
Friends tell us that things just keep getting better.
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
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,
I believe our friends. Too bad about their "until adolescence"
Sun Sep 21, 2008
We're getting great sleep. We just have a new sense of what counts as
great sleep: chunks of several hours between midnight to 8:00 am, with
a couple wake-ups for me to nurse Kai, and one wake-up for Randy to do
Max's cares. This schedule feels luxurious compared to when Kai was
nursing through the night, with Randy getting him in and out of his
bassinet each time since I was too weak.
We're also getting in great showers, thanks to our newfound sense of
what counts for that too.
Tue Sep 23, 2008
The future feels manageable.
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
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
We need to cut off Max's interactions with Kai two seconds earlier.
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
Randy and I take Kai for his "take-home-baby" follow-up appointment
this morning. Dr. Zerin
notes right away how different he looks from Max and how much he looks
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
I'm feeling used.
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
We aren't trying to keep Kai from meeting family and friends. But our
focus on just getting through the days means that we aren't scheduling
our social calendar.
A colleague reassures me this
morning that it may take 6 weeks to get there.
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 sneezes, Max giggles and exclaims BAYEEbee!
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
There are people out there who might find Kai's poops and spit-ups
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
We're returning to Camelot.
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:
Even some of their nursing idiosyncrasies are similar.
- at 8 lbs, 15 ounces
- at 21" long
- in the rare posterior position
- 6 days late
- 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
Expecting our next really lovely day sometime in the New Year sounds
Sat Oct 4, 2008
The way our moms tell it, Randy was a crybaby and I was an angel. Kai
seems to be taking after Dad. We break out the pacifier tonight. The
generally-recommended start time is at one month of age, because
pacifiers are associated with a decreased risk
but they can interfere with breastfeeding if introduced too early.
We're a week early. It feels none too soon.
Mon Oct 6, 2008
Everything is Camelot
relative to the hospital. At least for Randy and me. When Randy
asked Max yesterday if he wanted
to go to the hospital, he gave an eager yes. We should have
listened to him. We should have listened to the doctor.
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
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
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
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
The plan was to keep Kai out of the hospital. There's no place for
him to stay, we don't want to expose him to hospital-grade germs, and
he would only interrupt Max and Randy's precious snatches of sleep.
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
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
The circle of uncooperative sleepers is expanding.
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
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
Most of the time, I think our lives with Max feel easier than people
imagine. Not so with his unexpected "stays at the inn" - with all of
their uncertainty and fear, the feeling of helplessness that comes
with the loss of control, the futile attempts to establish a sense of
normalcy within the confines of a hospital room. When Kate and Kai
and I arrive today, Randy is sad to see us. We provide too much of a
reminder of how good life can be out there, and how demoralizing it
can be in here.
Fri Oct 10, 2008
Things look good in the morning.
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 good news is that we've avoided surgery to create a new opening into
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
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
And the great news is that we are still home.
Tue Oct 14, 2008
Our understanding of Max's infection continues to evolve.
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
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
While we're clearing up the kitchen this afternoon, I say to Randy,
"That was a nice set of visits." "Really?" he asks. His tone is not
skeptical - just curious. He wants to know what happened.
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
Max receives a spectacular
congratulations-big-brother card this afternoon - so spectacular
that he keeps his distance from it. I'm sure the card will be fully
appreciated someday, just like the other gifts from my lab group
(crammed in with us here in their equally spectacular
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
The best gem from the sleep
bible has nothing to do with sleep. (Kai doesn't give me much of
it for my birthday, since he seems to have hit his 6-week growth spurt early and
nurses at least every couple hours.) The book implores new moms to
get out of the house. Upon reading this advice last Friday, I
realized it had been several days. I wasn't sure I could pull it
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
Mon Oct 20, 2008
Kai cries several times today. But instead of working himself up into
an inconsolable frenzy, he calms - to my soothing, and a couple times
on his own. He also smiles. He has been smiling for a while
in response to Randy's antics, but now he smiles at Max and me,
without us even sacrificing our dignity.
Did I really imagine that this darling boy would ever use me?
Tue Oct 21, 2008
I can't seem to forgive myself.
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
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
When I burp baby Kai, I sometimes worry about putting too much
pressure on his g-tube. When I switch him from one of my arms to the
other, I occasionally sense a trail of tubes and wires swinging around
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
It doesn't matter that it's a bike and not a horse.
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
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
I haven't felt as fiercely protective of Kai as I did with Max. I
have assumed this is because we haven't been handing Kai over to
surgeons, commuting to see him, and learning from nurses how his night
went. But tonight Randy and I spend our first three waking hours away
from Kai, out at dinner with a visiting speaker. We
come home to learn that he cried almost the entire time we were away.
I hold and nurse and soothe and love him, as if it's my last chance
before a stranger comes to take him from my arms.
Maybe any kind of absence makes the heart grow mama bear.
Tue Oct 28, 2008
Time flies, especially in Kai clothing-months. Kate clears out his
0-3 month wardrobe today, and fills his drawers with Max's 3-6 month
Wed Oct 29, 2008
Kai is bored by what we do. It's a good thing. Two weeks ago, he
slept through an hour-long talk by Max and Henry's dad, on
electrophysiological studies of reading. Last week, he slept through
a panel discussion of neuroimaging methods - I had to wake him to eat.
He slept through the visiting
speaker's talk on cognitive control Monday.
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
Thu Oct 30, 2008
I can't imagine wanting anything for Max and Kai other than their
happiness, wherever they may find it. They won't be pressured to go
to Caltech or MIT to become engineers, like I was - the only daughter
to not fulfill this parental dream. (Oh wait, I've forgiven baba and
jiji for all that.)
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
We've come up with one good Halloween costume in our adult lives -
over a decade ago, during the tabloid era of Tonya Harding, Lorena
Bobbitt, and Amy Fisher, aka Long Island Lolita. I wore a pair of
pants with the rear end cut out, and Randy attached the cut-out to the
rear end of his pants. He sported a gold chain around his neck. I
went blond, with a bullet wound in my face. As Joey and Mary Jo, we
won prizes for punniest costumes.
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
Max doesn't see us watching much tv. I explain tonight that we are
tracking an historic election. He goes to bed before any major
results are in. So I'll tell him in the morning.
Someday, he could be President.
Wed Nov 5, 2008
I wish I spoke Dutch. Then I could follow the stories of Robin and Emily (after being contacted by
their parents this week, in English). Robin is a 2-year-old in the
Netherlands. He may start on Omegaven,
after being directed to Max's page by the family of Emily, a
3-month-old in Belgium. I think "moeder met een zoontje dat het Short
Bowel Syndroom heeft" is me, and "de amerikaanse professor
Dr. O'Reilly" is Randy. "Omegaven" is Omegaven, a lifesaver in any
Fri Nov 7, 2008
A glimpse of manageable is all it takes.
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
Max has been walking around the house saying, "Baby, die." And he
often instructs me to throw the baby. But after I teach him the word
"put" this morning, he sweetly asks me to "Put baby in swing, please."
I'll believe that's what he meant all along. And he still can't
pronounce the "k" sound - this requires a closing at the back of the
mouth that gets practiced with regular eating. People's surprised
reactions remind us to explain that "die" means "Kai."
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
Max makes chirping sounds at tuck-in. Randy is doing his cares with
Max in his lap. I'm drying Kai off from his bath. We wonder what
these high-pitched sing-song sounds are all about. As Randy says
something to Kai, it dawns on him. He queries Max. "Are you
imitating Daddy talking to baby?" Max gives a satisfied yes.
As far as he's concerned, imitation is the highest form of teasing.
Tue Nov 11, 2008
We didn't think Max could get a flu shot. The vaccine is cultured in
eggs, which he is allergic
to. (We also didn't know that drive-thru flu shots existed, but
that's how Randy and I got ours last month.) It turns out that an
allergist can do a skin test with the vaccine. If it's positive, they
give a 10% dose of the vaccine, and if the patient
handles that, they give the remaining 90%. If the skin test is
negative, as it was for Max at the hospital yesterday, they go
straight to the
100% shot. He handled it just fine then, but seems cranky and
uncomfortable today. Struggling through three bag changes, beginning
at 2 am, probably isn't helping - him or us. But hopefully our
unexpected shots will help us all stay healthy.
Wed Nov 12, 2008
Max's pants aren't falling
down any more. His weight isn't back up to where he was
pre-infection, but he seems to be gradually gaining. We'll make two
changes to help him further, as decided during his appointment with GI
Jason on Monday. One is a small increase to his TPN. He had dropped
from a 12% dextrose
9% just before the infection, increased back to 12% after
the infection, dropped back to 9% when it appeared that he was back on
track with his feeds and growth, and now will go to
10%. He will also start
taking a daily dose of fat (medium-chain triglycerides, or MCT)
through his g-tube, to increase his enteral calories.
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
All should mean a sooner need for bigger pants.
Thu Nov 13, 2008
I wonder if all of Kai's medical appointments will seem weird.
Today's two-month check-up confirms that he is big (weight, length,
and head circumference are all in the 90+ percentile) and unhappy but
not unreasonable about shots (crying real tears after the three
immunizations are injected into his chubby thighs, but calming after a
few minutes in our arms). We discuss more take-home baby stuff with the
pediatrician. We will start giving Kai vitamin D drops, recommended
at this age because babies have started to show deficiencies in recent
years, as parents increasingly protect their tender skin from the sun.
I will consider pumping milk to give to Kai from a bottle
occasionally, recommended to establish these skills before he gets too
attached to me as the sole source of his food.
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
Fri Nov 14, 2008
Our colleagues think we are liars. We've realized they are right.
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
De Quervain's tenosynovitis. Music to my ears.
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
Tue Nov 18, 2008
Feel useless in splint
from doc who confirms de Quervain's.
Next 6-8 weeks.
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
Progress on stem cell transplants.
Fri Nov 21, 2008
Kai might have been protecting me from Max. More specifically, from
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
Aunt Katie visits! Spends her days calming Kai, entertaining Max, and
getting us out of the house. We are grateful for the weekend respite
and company far beyond what I can type.
VRS should arrive soon.
Mon Nov 24, 2008
Part of me rejoices when Kai
rejects Randy's attempt to feed him from his first bottle
this afternoon. I'm not sure whether it's the same part that gets
choked up watching Kai
happily sucking down my milk in Randy's arms 20 minutes later.
Tue Nov 25, 2008
I can't blame Max for throwing a temper tantrum this afternoon. Our
semiannual meeting with his home therapy team -- to assess how Max is
doing and what our goals are -- is grueling. Their checklists give a
sense of Max as a kid who doesn't reliably organizes toys into
systematic groups, form five word sentences, approach unfamiliar kids
at the playground, or chew and swallow his food. The barrage of
questions is enough to make anyone feel like pounding and kicking the
floor and not listening to what anyone has to say.
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
(With help from MacSpeech)
Wed Nov 26, 2008
We're dealing with the Rashomon of
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
I think of King Kong tonight -- specifically, the scene where the
giant beast is captured and taken from the island, and the natives
breathe a collective sigh of relief. That's what I imagine Toshio's
family and friends doing after we leave their Thanksgiving dinner.
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
I have resumed mixing the TPN. Randy loosens the needle caps so that I
can remove them without straining my wrists. I take off my splint
so that I can use my thumb for grasping syringes, but I fix my wrist
in position as if it's still in the splint. The resulting procedure is
tedious but pain-free.
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
Mon Dec 1, 2008
So many families have said that when the labs look great but your
parental instinct tells you something is wrong, trust your instinct.
We hope that advice can also work in the opposite situation.
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
We didn't expect to be revisiting our Boston days so soon. But Kai,
who will turn 3-months old in one week, moves on today to his 6-9 month wardrobe, and the
snap-up sleepers that Max wore as we watched Omegaven
save his life and waited to return home. These outfits are
intricately linked with healing in our minds. But our big tubaloo may
need to outgrow them and start walking before my wrist can heal.
Sun Dec 7, 2008
The Golden Rule isn't working so well for Max. After all, if he were
in an infant swing, he would want others to push him as if they were
trying to send him flying out of it. We've been giving him stern
"No!"s, and explaining that he needs to be gentle with baby. But this
is incomprehensible to him. His only recourse has been to sweetly
sign and say "please," as if he'll surely be allowed to do unto baby
if he only asks nicely enough.
Mon Dec 8, 2008
speaker manages to keep Kai's attention for a record half hour.
It IS the most relevant talk he has attended - on advantages that
children might have over adults in learning, creativity, and
intelligence - thanks to their immature brains, in particular,
immature prefrontal cortex. And the talk includes the most
fascinating video Kai has ever seen - of me, 12 years ago, testing an
infant's cognitive control. He falls asleep soon after, right through
the part about the role of sleep (when the prefrontal cortex is
inactive) in consolidating what has just been learned.
Tue Dec 9, 2008
A little googling can be a dangerous thing.
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
I restrain myself from waking Kai this morning to see if he is okay.
I do confirm that he is breathing. Again and again. And I spend
considerable time convincing myself that his right leg, which is stuck
between two slats of the crib, could not cause a problem so serious as
to render him comatose. He sleeps on, for an unprecedented 9 hours
straight - several hours more than his longest stint to-date. I drool
over all the uninterrupted sleep I could have had. What I got is 6
hours, waking to Max screaming at 6:30. He is fine, maybe just out of
sorts from yesterday's flu shot booster. A 6-hour chunk of sleep is
still a long one for me these days, so I'll take it, along with the
thrill of Kai's promise of even better.
Thu Dec 11, 2008
Kai goes a whopping 9.5 hours before waking this morning, but I'm
still only fantasizing about all the sleep I might get one day on his
new schedule. I wake at 6:30 again instead, to a SQUEAK THUMP, SQUEAK
THUMP, SQUEAK THUMP coming from Max's room. I check the video monitor
that we use to watch him. It shows an empty bed.
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
You don't realize what you have until it's gone. We're doing it backwards again,
not missing what we don't have until it's here.
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'
Her visit is too short. I'm looking forward to missing her more often.
Tue Dec 16, 2008
Something tells me that putting the kids in daycare this morning so we
can hit the slopes is a mistake.
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
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
Max gets to choose how he and Kai spend their last day of our mountain
getaway. So back to daycare they go.
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 wakes at 4:00 am calling for "day" and "home." It's adorable
despite the hour, just like it's adorable despite the cacophony that
when one kid cries in our hotel room in the middle of the night, the
other kid wakes and joins in.
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
The Velcro on my splint keeps catching on things. I've been thinking
I should lend it to Kai. When 3-month-old infants wear "sticky mittens" (covered in Velcro),
which allow them to obtain Velcro-covered toys just by swiping at
them, they not only develop more advanced skills in exploring objects,
they better understand the goals and intentions behind other people's
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
Randy wants me to call the plumber. Our garbage disposal has been
broken for weeks. Randy would normally be the one to take care of it,
but I suggest that for Christmas, we might help each other out with
things that we can't seem to get around to doing. So a working
garbage disposal will be my gift to Randy. I hope that someday -
before the kids move out of the house - we'll laugh about how great of
a present this seems to be right now.
Mon Dec 22, 2008
Auntie Naoko (who arrived with Uncle Mike last Friday) notes that Max
seems to be on his way to becoming a nonstop talker like Toshio. For
the first time, we are in a position to believe her.
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
Snowmass daycare may be Max's
Tue Dec 23, 2008
I've been feeling sad about the inevitability of Kai's eyes changing
color. Not in a green-is-better-than-brown kind of way, but in a
reluctant-to-say-goodbye to babyhood kind of way. Just like I mourned
the disappearance of each tiny white bump from Max's newborn nose.
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
Wed Dec 24, 2008
Kai and I lie in bed this morning, eyes locked. The intensity of
emotion is almost too much to bear. Then Kai delivers a cavernous
fart. As our eyes reconnect, I push aside the thought that I might
have mistaken gas for love. Then Kai lets loose with another
full-body rumble. He relaxes and moves on to staring at the light
fixture above us, and I join him.
Thu Dec 25, 2008
With one exception, Kai's first Christmas upholds the idea that experiences
make people happier than material goods.
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
Kai is happy in everyone's arms. Everyone is happy with rib roast in
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
Max has been sneezing at Kai.
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
When I tell Max early this morning that Toshio will be coming over, he
runs to the front door. When baba explains that it won't be until
this afternoon, after Max's nap, he runs to lie on his bed - as if
getting the nap out of the way will bring Toshio over sooner.
Mon Dec 29, 2008
Andrew's family returns from
their dream trip to see loved ones in the Czech Republic. Their
only regret is that it went too fast. His mom says that we inspired
them with Paris. I remember how we
felt, hearing about Andrew's first time skiing earlier this year - one
of their happiest days since he was born. And I think about taking the boys to Snowmass.
The inspiration is mutual.
Tue Dec 30, 2008
Randy gets to have his cake and eat it too, and to get out of giving
me any. He buys a garbage disposal this afternoon and replaces our
broken one himself - a surprisingly smooth and satisfying process that
garners him both a possession and
an experience. When I ask what alternative gift he would like for
Christmas, he suggests that I arrange a long-intended photo shoot for
the kids - the errand that he was
supposed to gift to me. Not exactly the stuff of watch chains
and tortoise-shell combs, but we'll call it just a little more
romantic now that the plumber's out of the picture.
Wed Dec 31, 2008
I enjoy an hour of silence nursing Kai this afternoon while Randy and
Max run errands, followed by two hours of nonstop talking from the time
Max returns until he goes to sleep.
Thu Jan 1, 2009
A 3-bag-change Christmas
turns out to be a gift, at least in the context of a 4-bag-change New
Year's Eve Day. The g-tube mic-key is holding a good seal now, so the
problem must be something else, like a retracting stoma.
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
And a 4-bag-change New Year's Eve Day turns out to be a gift, compared
to checking Max into the hospital.
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
We may have appreciated the gift of today under false pretenses.
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
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
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
So we can wait to see what tomorrow brings - or at least what it
appears to bring.
Sun Jan 4, 2009
The numbers: Sodium and BUN are now normal. Chloride is still
high but continuing to decrease, and potassium is almost back up to
normal. The lab couldn't measure ALT/AST values due to the presence
of lipids (presumably Omegaven) in the blood sample, though we used
the same procedure as yesterday to draw it. Weight is up. Ostomy
output is 30% higher than normal.
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
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
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
Maybe the reason we can't come up with a satisfying story is that
there isn't one. At least not just one.
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
No one has an explanation for the roller coaster of Max's liver
enzymes. This might be yet another story.
Tue Jan 6, 2009
We didn't think we could be worse hosts. Since Kai's arrival, we have
"treated" our many welcome visitors to our lives of never-ending kid
cares - regular and medical - and desperate attempts to squeeze in
sleep and work wherever we can fit it. Meals are haphazard. Getting
out of the house is far from guaranteed. Showers even less so.
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
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
I'm too drunk to trust my assessment of today.
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
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
Thu Jan 8, 2009
No "aside from"s tonight.
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
Ellie is front
Sat Jan 10, 2009
There's one problem with Max's desire to run everywhere - at least
while he is tethered to his TPN pump.
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
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
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
Randy expects me to stay calm in the face of projectile vomit. After
scares (and even just threats of scares) like yesterday's over the
last 2.5 years, six vomits across the window of 5 am to 11 pm
shouldn't be a big deal. Even if they soak our clothes and furniture
and floor and Randy's laptop. Even if they make Saturday Night Live
depictions of fire-hose emesis seem tame. Even if their reassuring
milky white color turns yellow as the day goes on. Googling reveals
that yellow vomit is no cause for concern, but yellow-green indicates
an emergency. Was it definitely yellow and not yellow-green?
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
Mon Jan 12, 2009
Kai is getting used to being placed quickly on the floor. This
morning, Max does what I had hoped was not possible, rocking the rocking chair so
hard that it falls over backward. He kneels motionless with his
face pressed into the chair back, which is now nearly horizontal. He
is fine, just stunned. His tubes, which I check after throwing Kai
down and rotating Max and the chair back upright, were long enough to
accommodate his new orientation.
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
Tue Jan 13, 2009
Aunt Katie mentions that she is sending a sticker book from her recent
travels in New Zealand. Perfect timing. Up until a week ago, Max
hadn't shown any signs of the sticker obsession we'd heard about in
other kids. Now he is adorning his toys with bear stickers that come
with his ostomy supplies, and the surest way to lure him anywhere is
by promising that he'll get to play with tape.
Wed Jan 14, 2009
A watch seems like such an easy thing to lose. But Max always knows
where his is.
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,
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
Ferberizing, or letting your
baby cry endlessly in an attempt to teach good sleeping and soothing
skills, reminds me of childbirth. More painful than the worst pain
imaginable, with no idea when it will end. But when it does, the pain
was unquestionably worth it, and quickly starts to seem like it wasn't
such a big deal after all.
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
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
In my time travels, I would
definitely go back to when Max
was gagging at the sight of food, or of anyone else eating. To
the time when his feeding
therapist gave up on us, and the time we were rejected from the peer
feeding therapy group in Denver. And I would show myself a video
from last weekend. In the video, Max is unhappy. We've taken him
grocery shopping, and he is complaining. He whines about all the food
surrounding him. All the food he wants us to give to him to eat.
Finally, Randy reaches into our cart for a loaf of bread, pulls off a
piece, and hands it to him. Max cheers and bites into it. He runs
around the store, munching, happily pulling out more foods for us to
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
We didn't actually manage to record a video last weekend. Time
travel can take care of that too.
Sun Jan 18, 2009
We're lucky that Max came first.
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
Mon Jan 19, 2009
Being so in love with someone I barely know feels weird. Randy
doesn't get what I mean. Well, I ask, what do we really know about
Kai? He enumerates the facts:
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
Tue Jan 20, 2009
Max watches Ellie's Boston Globe
video tonight. I want him to see her jumping on the trampoline,
since this activity might just become relevant for him later this
month. He has little reaction to that - it seems as unremarkable to
him as footage of this historic inauguration day. But when Ellie
strains against her g-tube, he gives me a look between a smile and a
laugh. He does the same thing when he sees her Omegaven
bottle, and when she points out her mic-key and her ostomy bag. His
reaction suggests an eager recognition and appreciation - the kind we
hope all these kids can provide for one another as they get older.
Thu Jan 22, 2009
We've made a lot of graphs to determine when parents are ready to face
the world - or at least, ready to face my research lab. Letters get
sent to new parents inviting them to sign their babies up, and my lab
tracks how many people reply. Parents of 4.5 month-olds are the most
responsive, so that's when our letters go out. Kai received his last
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
Sat Jan 24, 2009
The best measure of how our holiday getaway went is Max's
reaction to heading into the mountains again. This trip is shorter -
just a couple days to catch up with colleagues at the local Winter
Brain ski conference. But we promise Max all the enticements - he'll
see Toshio (during a quick stop on our drive up), we'll go through
tunnels, and he'll attend daycare. We can't finish our packing and
loading fast enough this morning. Max alternately trails behind us or
stands by the pile of luggage, announcing: "I'm weddy. I'm weddy.
Sun Jan 25, 2009
I don't get to see how Max reacts to Copper daycare. Randy and Nanny
Kate drop him off this morning while Kai and I stay back at the condo.
Apparently, all I need to imagine is how Max ran off
to Snowmass daycare. The kid
Mon Jan 26, 2009
Part of me is happy when the daycare calls us to pick Max up a couple
hours early. He enjoyed himself all day yesterday (even during nap
time, which all the kids played through), but after running off for
more fun this morning, he then kept asking for Mommy Daddy, Mommy
Daddy, Mommy Daddy.
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
We'll take any sign of progress.
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
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
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
Nanny Kate calls in sick. Randy stays home with the kids, since my
meetings today are harder to reschedule than his. We'll switch roles
tomorrow if necessary. The
trampoline has arrived just in time.
Fri Jan 30, 2009
Feed Kai, starve Max, or starve Kai, feed Max? Max is sneezing
double-barrelled strands of snot that dangle like pulled taffy while
we race for tissues. Kai's temperature is elevated, mildly, probably
from the 4-month immunizations he received yesterday. Both boys seem
to be feeling fine, with no interest in starving. So
we feed both our fever and our cold.
Sun Feb 1, 2009
I change an ostomy bag while nursing this morning - a first. The boys
have never been this needy at the same time with no one around to
help. After Kai is sated, he plays with Max's feet from my lap while
I finish my work. It seems like an ingenious solution, until Randy
wakes a couple hours later and discovers that the bag is already off.
Mon Feb 2, 2009
Nobody can say the right thing today. Another TPN parent recently
pointed out that some days are just like this.
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
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
We've never been so happy for Max to fail.
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
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
Thu Feb 5, 2009
Fish oil continues to do its thing, around the world.
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
Just sitting still has never been so endearing.
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
We're back to just the usual mysteries. With yesterday's lab draw,
electroytes are all fine, and BUN has returned to the high side of
normal. Max seems to be stably past the New Year's fluctuations. The mysterious correlation continues
between hematocrit (now on the low side of normal) and liver enzymes
(now on the low side of their still-mysteriously elevated levels).
We'll keep his TPN formulation the same, including the higher
(13%) dextrose for growth.
Hopefully we can work our way back down as Max's g-tube issues resolve
so that his food doesn't leak out. The 1.2 length mic-key turned out to
leak even more, so we're back to the 1.0 - and trying to appreciate
the luxury of familiar mysteries.
Wed Feb 11, 2009
When Max was ready for us to get him in the mornings, he used to cry
out, usually for Daddy (even though I've been on morning duty for all
but a few weeks after Kai's birth). He is much sweeter now - and not
just because he calls for me. He uses his powers of persuasion,
announcing, "Mommy, nice day! Wake up! See nice day!"
Thu Feb 12, 2009
It's a little less sweet when Max yells to me about the nice day at
5:30 this morning. But he almost makes up for it when I go in, lift
the shade to show him that it is still dark out, and ask him if he
knows how early it is. His latest time-telling strategy seems to be
to say the highest number he can think of. It was 24 over the
weekend, and 35 yesterday. Does he realize what an ungodly hour it
is? He looks at the clock, and declares that it is 49.
Sun Feb 15, 2009
Are hippos fast or slow? I can't wait to find out.
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
As much as Randy and I can't wait for our weekend family adventures,
Max seems just as excited this morning for "Monnnn day," when Gee "hum 9" (comes at 9:00) and
"go home 4."
Tue Feb 17, 2009
This morning, I ask Max if he knows what day it is. He guesses
Saturday. I explain that Saturday was last weekend, the day that we
never made it out of the house because of offset nap schedules and
refusals to nap. Yesterday was Monday, the first weekday of the week.
Today is Tuesday. Max jumps in to count off the days: Monday, Tueday,
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
Measure twice, cut once, they say. Or in our case, cut once, measure
twice a few years later.
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
Daddy is super. When Max wants something really big, like a huge sip
of formula, he asks for "Daddy-size!"
Fri Feb 20, 2009
"Love mama." That's what Max tells me when I kneel down next to him
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
Sat Feb 21, 2009
I didn't think things could get any cuter, but Max is now pointing out
what HE thinks is "tyoot," namely, Kai and baby hippos.
Sun Feb 22, 2009
Kai is second-born. Kai is healthy. I wonder which is the bigger
factor in why his milestones seem less momentous than Max's. Yes,
Randy and I are amazed by his very existence. But we're not running
to get one another at the sight of him playing with his feet. We
don't call family members this afternoon to announce his first try of
solid food - a spritzing of rice cereal mixed in with breast milk.
Luckily Kai has Max to cheer his every roll and drool and squawk. And
even his baths, which Max now congratulates him after, saying "Great
Mon Feb 23, 2009
We should have known it wouldn't be long before Max talked of love unprompted. Pure and
genuine. He carries his Pixar hand-me-down from cousin Toshio around
with him before tuck-in tonight, squeezing the toy's legs together to
send colorful lights whirring around the head. And he says it. "Max
Tue Feb 24, 2009
At least the kids are mine in name.
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
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
As of this morning, Max has a newly consistent story. Who does Kai
look like? Max. Who does Max look like? Kai.
Sun Mar 1, 2009
Randy's birthday should have been on Wednesday or Thursday.
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
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
We've been too grounded in reality.
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
We don't get to celebrate a complete failure, it turns
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
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
Max doesn't want me to leave his room this morning. He gives his
cutest pleading look. I purse my lips to convey that it won't work -
I've got to leave to get his meds. He turns his cupped palms upright,
taking care not to spill, and offers to wash my hair.
Sun Mar 8, 2009
Randy and I rushed back from a work event last night to deal with
another popped Nutriport
balloon. This brand is still our favorite of the three options in
terms of fit, but this one lasted only 2 days instead of the expected
2 months. Still no insights into what is causing the problem or how
to fix it.
Tue Mar 10, 2009
Nana is surprised at the sight of Randy and me. She arrives this
evening to kick off a couple weeks of family visitors. She can't
believe I'm still in my splint. The healing process has
been as slow as people warned it could be, but I'm happy for every
small sign of progress, like now being able to peel a banana without
pain. Randy will be happy when he's able to eat a banana
without pain, after getting his wisdom teeth pulled yesterday. His
puffy cheeks, Nana notes, make him look more like Max.
Wed Mar 11, 2009
I see the former student I've been dreading seeing. Amanda worked in
my lab for all four of her years as an undergraduate, and now is in
med school. She did a rotation in the ER at Children's Hospital last
month, and we hoped we wouldn't see each other then. Today she shows
up for the honors thesis defense of one of my current students, who
happens to be Amanda's sister-in-law. We'll go back to dreading her
next month, during her rotation in the inpatient unit at
Fri Mar 13, 2009
Aunt Katie's visits are always far too short. If Max's g-tube were
working properly, the chances of it needing to be replaced during her
current 2-day stay would be vanishingly small. Instead, it's
practically guaranteed. Max's latest Nutriport pops this morning,
after a record-short 1.5 days.
Sat Mar 14, 2009
It gets even better than not
flinching. Randy and I walk home from brunch with Aunt Katie,
Grandma, and Grandpa. Max and Kai hold hands in the stroller.
Sun Mar 15, 2009
I have shared Randy with Chloe from the beginning. I have never known
him without her, or her without him. She had been with him for six
months when we met, after spending her first months on the streets of
Pittsburgh. She was the "wrong kind" of kitty, Randy first declared,
when he saw that she wasn't the tabby that his friend had claimed.
She climbed up on him and batted at and chewed on the buttons on his
shirts. Randy gave her the wrong kind of name. She quickly started
to go by Fuzzy instead. Only the vets called her Chloe.
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
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
Randy and I are used to being asked to tell the same stories again and
again. We make up stories for Max that involve family members,
friends, video characters, and vehicles - a combination that is pretty
guaranteed to require encores. But tonight, I'm the one asking Randy
to tell his story again, the one about what Max did upon arriving at
the park this afternoon. Max announced that he wanted to race down
the slide. Randy explained that he needed to find someone to race
against. Max looked around, saw two older girls nearby, and walked
over. He stood there, looking at them. One of them said "hi," and
asked what his name was. Max pointed over to the slide, and said
"race." And so they did, and then ran around playing together until
it was time to go home. At least that's what I understand from the
two times that Randy was willing to tell the story.
Tue Mar 17, 2009
I have been expecting Max's lab numbers to be off today. When we
place limits on his behavior, he often throws himself down on the
floor in protest. I associate this kind of behavior with the last time his labs were off.
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
Max names everyone in our family tonight: Max, Mommy, Daddy, baby
Kai. Then I quiz him.
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
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
Jiji wants more evidence.
He and baba arrived on Thursday. I have been telling them about my student's recent discovery
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
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
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
Mon Mar 23, 2009
"You would just never guess." That's the reaction Max gets at the
hospital this afternoon.
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
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
Max hears dishes clinking while I do his cares this morning. He
freezes and looks at me, wide-eyed. It's a few hours before Daddy's
wake-up time. And it has been a few days since Max has happily
announced "full house!" -- since baba and jiji left last weekend, and
Aunt Katie, Nana, Grandma and Grandpa the week before that. Max
decides the clinking must be Nana, and calls for her over the next 5
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
Kai's back has never been so clean. I normally struggle to get to it,
when he's wet and slippery and lying on it in the baby bathtub. But
today he proudly sits up in the tub during the entire bath. With all
the fun new things Max is doing each day, Randy and I have been
amused to think that sitting is the most exciting milestone on
Kai's horizon. But sitting IS exciting -- it means Kai is suddenly
reaching out for what he wants and acting more willful and in control
of his world. It does make cleaning under his belly folds trickier
Fri Mar 27, 2009
The immunization shots aren't the worst part of Kai's 6-month checkup
this afternoon. First there is the woman in the waiting area who
tries to get friendly with him. Then there is the nurse who takes us
back to an exam room. Then there is Dr. Zerin. All of them bring
Kai to tears, big fat drops streaming down his cheeks.
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
Wednesday was our only real
celebration of spring break. But this week, our whole family is
packing up and heading off for three days and two nights in... Denver!
That's the only way we've figured I can nurse Kai, mix Max's TPN, and attend the SRCD conference. If you'll be
attending, please feel free to come by my students' posters (and meet
Max and Kai!). And keep an eye out for Chris Chatham, who won't be
presenting on "Why
toddlers don't do what they're told" since we didn't know if the
conference timing would work with the publication timing.
A Synergy Between Task Switching and Abstraction in 3-Year-olds. Maria Kharitonova, Joedy Hulings,
Yuko Munakata. Thursday 10:20 am - 12:00 pm, Convention Center:
Exhibit Hall B, Poster 10.
Is Saying "That Was Wrong" Enough? Factors Influencing Children's Use
of Negative Feedback to Overcome Perseveration. Katharine A. Blackwell, Yuko
Munakata. Thursday 4:20 pm - 6:00 pm, Convention Center: Exhibit Hall
B, Poster 64.
Becoming Self-Directed: Abstract Representations Support
Endogenously-Cued Switching in Children. Hannah R. Snyder, Yuko Munakata.
Thursday 4:20 pm - 6:00 pm, Convention Center: Exhibit Hall B, Poster
Why Do Children Perseverate? Contributions From Working Memory and
Directed Inhibition to Flexible Behavior. Katharine A. Blackwell, Nicholas
J. Cepeda, Yuko Munakata. Saturday 4:20 pm - 6:00 pm, Convention
Center: Exhibit Hall B, Poster 15.
Thu April 2, 2009
I've never realized the perks of working in child development.
It means a family-friendly conference, made manageable thanks to a
25th floor suite reserved for nursing moms during the meeting.
It means a chance to hear a colleague speak about why you would
be unwilling to replace your childhood teddy bear with an exact
replica, just in time to remind Nanny Kate to send Kai's security
blanket with Randy and the boys on their drive from Boulder this
It means appreciating how magical Max's development is, even to
experts, when a colleague who
hasn't seen Max since Boston exclaims that he is talking. This
colleague studies language development.
The best surprise is that the conference means getting to meet the dad
baby whose parents are both in academia (and have also been known to
run statistical analyses of their
kid's numbers). We make plans to meet up again after Max arrives.
I can't wait for Blaise's dad to see how well Max is doing, to get a
sense of hope for things like the family trip they want to take to see
friends in Paris. But when the moment arrives, Max falls to the floor
in protest of the boredom of standing in front of my students'
posters. He insists on ditching us to play on the escalators. Not
the Omegaven fan club meeting I had envisioned, but the brief glimpses
we get of Max running off through the crowd, with Randy trying to keep
up, provide a pretty good sense of possibilities.
Fri April 3, 2009
You don't go into academia to make friends. Our former department chair
likes to say this, as a commentary on the constant rejection we face in
You also don't have a special-needs kid to make friends.
But we have found it to be a pretty amazing combination. Many
colleagues have indicated over the years (and now at this conference)
that they are following Max's story. Even colleagues I thought didn't
like me. Well, maybe they didn't like me, or even still don't. But
they are rooting for Max. Blaise's mom learned about Max from a
professor at Brown who we don't know all that well. Max watches
curiously as strangers greet him exuberantly around the convention
He can't get enough of the big city. He wakes in our hotel room this
morning, saying "Nice city! See street train, taxis, and tall
And I can't get enough of this big conference, with too many
interesting parallel sessions to choose among. I find that even using
"friend of Max" as a criterion for the speakers does not help to
narrow the options.
It's a nice violation of what we went in for, as parents and as
Sat April 4, 2009
We come home to 8 Belgians living in our basement.
Just before we left the
conference, Liz Spelke asked
whether I thought language development might support
the reactive to proactive
shift we have observed in children. Randy and I have certainly
been using words to try to prepare Max for the future that has
arrived: Sarah, the 17-year-old
Belgian who helped convince us to go
to Paris, her family (Randy and I
went to grad school
with Axel, her
dad), and another family of four they are traveling with for a
two-week tour of the southwest.
I don't think there is any way to truly prepare for being welcomed
home by this festive group. Max seems stunned when we first enter the
house, but eventually starts offering trucks to the tweens/teens,
and soaking in the attention of the four girls.
We use words again to try to prepare him for the fact that they will
all be departing tomorrow. But we worry again that there's just no
way to truly prepare him. He spends the afternoon trailing after the
youngest, who is 12, calling Mimi, Mimi, Mimi.
Sun April 5, 2009
Sasha, Sasha, Sasha.
Max is predictably sad to send off Mimi and company at 8:00 this
morning. But he transitions easily to welcome toddler Sasha
and her parents a couple
hours later, visiting for the day after speaking at
the SRCD conference. Max
shows Sasha how to jump on his trampoline. Sasha shows Max how to eat
rice cereal with gusto.
Tue April 7, 2009
breakthrough in transplantation immunity. We continue to
appreciate the luxury of time that Omegaven
has given Max, as we watch the latest transplant
developments come in.
Wed April 8, 2009
Kai gets his passport photo.
Pittsburgh convinced us to
try Paris. Denver has convinced us to try
Amsterdam. A couple years ago, Randy accepted an invitation to give a
plenary talk there at the Cognitive Science conference this summer.
We hoped Max would be well enough to travel. We had no inkling of
Before we head out for Kai's photo shoot, I see a friend's facebook
status update: sweating it out in the passport office less than three
hours before his flight to Geneva. My first thought is to wonder how
so many people can discover at the last minute that their passports
have expired. My second thought is to check our passports. My third
thought is to thank my delinquent friend.
Randy gets his passport photo too.
Fri April 10, 2009
Max and Kai are gearing up to make certain family members very
Max plays with his Buzz
Lightyear while we change his broviac dressing tonight. In Toy
Story, Buzz's boot has "Andy" written on the bottom of it. But this
Buzz is marked for the cousin who handed it down to Max. Toshio has
never understood why Max insists on calling him Dato, even though we've
explained that it's for the same reason that Toshio calls us mumu and dodo. Toshio is just
too hard to say. But tonight, Max looks at the bottom of Buzz's
boots, and starts reading out letters: O, S, I, O. He has been
picking out letters like this for months. This time, he seems to put
them together, exclaiming, "Tosio!" We can't believe our ears. Max
just moves on to the other boot: M, A, R, R.
Meanwhile, Kai has been perfecting his "bwuh" sound. We think
"baba" can't be far off.
Sat April 11, 2009
Max feeds Kai pureed carrots for lunch and dinner -- one tiny bite for
baby, one huge bite for Max, another tiny bite for baby, another huge
bite for Max. Of the four of us at the table, it's too close to call
for who is the most thrilled with this sweet and promising turn of
Sun April 12, 2009
My cleaning frenzy this weekend means throwing away milk dating back
to August and September 2007 -- the milk I pumped just before weaning. I donated gallons to a
milk bank in Denver, at first because Max couldn't keep up and then
because of his allergies. I had saved this last bin just in case he
needed help re-establishing good gut bacteria after taking
antibiotics, for treating a line infection (or even a false alarm) or
bacterial overgrowth. But he experienced none of those things during
the year that the milk was good in our deep freeze. And we were a
little busy around the time it
expired last fall.
I've asked Randy a few times since then to toss the milk for me,
because I didn't feel like I could bring myself to -- to take this
product of so much emotion and effort and dump it in the trash. But
it feels easy today. I replenish the supply with what I've pumped for
Kai. And Max chows down on pasta with Randy and some expert coaching.
Randy tells Max to not worry about swallowing, to just keep chewing
and chewing and the pasta will turn into baby food. Max swallows bite
after fascinated bite. We are all moving on.
Mon April 13, 2009
Our yard might be kid-friendly just in time for another family to
Our nesting-instinct plan
last summer was to create a back yard that's safe and fun to run
around in. By the time Kai was born a couple months later, a large
trench had been dug around the yard, and all the dirt had been piled
up in it. That's basically how it sat all fall and
Progress on our move to
Berkeley has proceeded at the same pace. I told my students at
the start of the year that I would let them know as soon as Randy and
I had any updates to our plans. I have yet to get back to them.
After months of daily phone calls to bug the low-bid guy who skipped
town on us (and eventually returned to Boulder, but wouldn't return
calls), we get our first real sense of possibilities today. A wall is
going up in the trenches. The mounds of dirt get taken away by a busy
skid steer. We can imagine an alternative to Max's afternoons playing
soccer in the driveway.
We're hoping a parallel day will arrive after our months of daily
phone calls trying to coordinate Max's health insurance for our
sabbaticals. We're pursuing a second breakthrough for how it might
work. We don't count it as news, given that the first breakthrough
But maybe, just maybe, we'll end up trying to rent our home with its
kid-friendly yard for next year.
Wed April 15, 2009
I have been talking about myself shamelessly. It seems to have
I tried the same thing with Max, but he ignored my "mama mama" monologues and made
"nystatin" his first word. Then he went on about dada for months before expanding
his vocabulary to suggest an awareness of having another parent.
Kai says "baba" several times this morning -- his first crystal-clear
babbling. I run for the video camera, but by the time I turn it on,
he has switched over to "mama." Mama mama mama mama, all throughout
the day. It never gets old. I think I am teaching him that it means
squeal and kiss and hug me.
Thu April 16, 2009
If you want to know how things are going with Max, you might watch his
interchanges with his Bobo
monkey. Tonight, Max tells Bobo to just "chew chew chew, and turns into baby
food!" Max continues to thrill us with his progress on chewing
and swallowing -- pasta, bread, tortillas.
Bobo also gets subjected to the more mundane. A few nights ago, Max
tucked him in for the night. "Get PN ready," was the first step he
announced, as he pretended to cradle a bag of IV nutrition in his
hands. "Hook Bobo up." Just like we do with Max every night. "Take
old boop out, put new boop
in." "Boop" is Max's word
for the port that goes into his stomach. It should only need to be
replaced every few months, but we are still dealing with leaky messes
and mysteriously-popping balloons. Max mostly sleeps through the
night nonetheless. "Bobo sleeping, wake at 8:45 in morning."
Fri April 17, 2009
Kai gets two rounds of Tylenol
across the night. His third tooth seems to be roaring in, after his
first two came in with little fanfare.
Sat April 18, 2009
Max is a confident skeptic.
He has been napping beautifully during the week, when Kate is here.
But he is refusing to nap when it's with us on the weekends. We try
to convince him to lie down quietly for 5 minutes. We know that he
will fall asleep if he does. Yesterday (when Kate was off), Max kept
crying and getting up after only a minute of trying. This afternoon,
Randy explains the idea again: 5 minutes of just lying quietly. Max
is skeptical. ("It not work.") But he agrees to try. He ends up
napping for over an hour. He wakes, opens the door, and calls out,
"It didn't work!"
Mon April 20, 2009
Max is also a confident conjugator.
Back in February, his assessment
team noted that he wasn't producing many -ing forms of verbs. He
was producing more -ed (past tense) verbs then, but in recent weeks,
he has started talking in earnest about eatING, chewING, sittING,
Today, I think he is just showing off. As I change Kai's diaper this
morning, Max announces, "I go." Then he corrects himself: "I WILL
go." I follow him into his room. As he strides into his closet, he
continues his narration: "I'm GOING in." We can no longer see each
other, but I suspect his smile is as big as mine as he concludes: "I
Wed April 22, 2009
Max labs look
fabulous, again. Liver
enzymes are still roughly in their best-ever zone, just slightly
elevated relative to last month. Hematocrit continues to track the
enzymes, and is now back in the normal range.
Fri April 24, 2009
Max wakes at 4 am screaming:
"Baby Dai!" Baby Dai, Baby
Dai, Baby Dai!"
We often ask Max in the mornings who he dreamed about. Usually the
answer is Daddy or me or Kate, and we Awww and clasp our hands to our
hearts. Well, Kate and I do. But last weekend, when Max and I woke
from our naps and I was telling him about my weird dream, Randy asked
if he knew what we meant by dreaming. Max said no.
When Randy goes in at 4 am this morning, Max cries and cries,
protesting that "Baby's sad." Randy explains it's just a bad dream,
and Kai is fine. Max seems to understand enough about dreaming to
feel reassured, and quickly falls back asleep.
Sat April 25, 2009
Maya, Maya, Maya. Max sits
with his cousin and her big friends, at her 6th birthday party. They
are eating lunch. Max has a little of everything on his plate: rice,
beans, tortilla, grapes. He starts to gag on a grape. I hold back
from jumping in, even as I recognize that this level of gagging is one
that requires intervention, with Randy or me coaching Max to chew or
spit the grape out, then reassuring him. But in the midst of all
these girls, celebrating around the dining room table, Max somehow
settles himself. He chews the grape until he can swallow it.
Meanwhile, the party is all
about Carse Carse Carse and Paula
Paula Paula, as far as Kai is concerned. He spends much of the
afternoon content in the arms of his great-aunts.
Sun April 26, 2009
See no evil. This appears to be Max's take on morality.
He has been getting sweeter and more reliably gentle with Kai. We
still need to watch him though. This morning, Kai is sitting
peacefully on the floor in Max's room when Max bear-hugs him, knocking
him backward onto a pillow. He later tries to do the same thing when
Kai is sitting in a boppy in the great room. I warn, "NO Max! You
know better." He shuts his eyes. He squeezes them tight, and keeps
them shut as he moves in to knock Kai backward again. He looks
genuinely surprised when I seem to think that he should still be held
accountable for his actions.
Tue April 28, 2009
The little things still catch
me off guard.
Randy and I can't wait to see what new things Max will do and say each
day -- like taking the heated rice sock that I use for my daily
wrist therapy, draping it
over his wrist, and explaining that he is getting "stronger and
stronger and stronger." Like insisting on playing Candy Land, but
then moving his piece backward after winning the game because he
doesn't want to stop playing. Randy and I are also struggling to pull
ourselves away from Kai, with his adorable fascination with
everything, and his ever-clearer preference for us over strangers.
When a colleague told me last
week that it just keeps getting better, I found it hard to imagine. I
have been wanting to freeze time.
So I'm unprepared for the weariness and longing that hits me tonight,
with the simple act of updating my electronic calendar. Our weekly
orders for Max's IV supplies got pushed back from Thursdays to
Tuesdays three months ago, and I'm finally getting around to setting
an alarm to remind myself. I set it for Monday evening.
Repeat? Every week. End? Never.
Wed April 29, 2009
NP Kristin drops off an early
birthday present for Max. She asks how old he is going to be. "Fwee,
in May," he answers. She exclaims what a big boy he is. "I'm gwowing
up," he explains. Then, upon seeing the stylish rips in her jeans, he
suggests that she buy new ones.
Sat May 2, 2009
Max announces this morning, "I'm happy. Mommy's happy too!" These
are major statements after the misery of yesterday.
I came down with a cold on Monday. Randy had one for 3 weeks before
that. Mine turned into a 102 fever yesterday afternoon, with aches,
chills, and throbbing head (and a call to the doctor for reassurance
that this is not the H1N1/swine flu). Max seemed to have caught my
cold, but his took the form of dumping and dehydration. We're still
holding back on his feeds today to control the dumping, and I'm still
medicating to keep my temperature down. But yes, we're happy.
Sun May 3, 2009
The standard version of Candy Land features Queen Frostine, Lord
Licorice, and Plumpy Troll. Our version also includes the Ravenous
Monster. Max and Daddy try to get through cards quickly enough to
race their pieces past the monster, whose territory covers the left
edge of the board. They are too slow. Kai plucks each piece that
comes near him and coats it in drool.
Mon May 4, 2009
What a difference 500 cc makes.
Max has been looking like the stuff of
gold angel pins again, ever since he
fell and hit his head a couple weeks ago. Not while skateboarding or
climbing rocks -- he just spun out of his chair too quickly one
evening and fell flat on his forehead. The bruising started as a lump
there, then spread downward to give him two black eyes.
Now his black eyes are sunken from dehydration, after days of dumping
fluids despite us cutting back on feeds. He could pass for the
and Helena Bonham Carter in Sweeney Todd. He is cranky and
We draw labs this morning to confirm that his BUN (an indicator of
dehydration) is sky-high. Electrolytes all look fine. Dr. Soden has
three 500 cc bags of saline couriered to us. Randy start the first one
pumping through Max's broviac this afternoon. This is the only way to
get him fluids when a cold has shut down his gut, leading it to dump
fluid rather than absorb it. Max will get one bag over each of the
next three days.
We should have started this process earlier. But we first thought Max
was dumping from having eaten a lot of bread, and would recover
quickly. Then the weekend came, when it is more difficult to
coordinate with our regular doctors, medical suppliers, and couriers.
I was also transitioning from sleeping-off-fever to
sleepless-from-hacking-cough, and was not particularly useful.
But Max makes a strong case to catch and treat this problem more
quickly next time. He eagerly welcomes his three hours on the pump.
He still wants to drink afterward, but is good-natured about his sips
("I love Daddy-sized!"). He
narrates through dinner: Daddy's done eating! No, Daddy's getting
more dinner! Mommy's getting more juice! Daddy burped! Instead of
lying listlessly in the mosh pit while Randy sets up his TPN and I
nurse Kai, Max zooms around his train set. He does eventually lie on
the futon, but only after ordering me to nap until
45 in the morning, then lying
next to me briefly before running back to his train set, grabbing a
complex crane piece, and announcing that this is what he is going to
dream about. He is back to
Max -- our kid, not Sweeney Todd's.
Wed May 6, 2009
This morning's labs confirm: the 500 cc bags of saline have brought
Max's BUN down to the high end of normal. But he is still dumping
fluids, despite taking in very little food. So we will keep giving
him saline in the afternoons. It's easy for Randy and me to be here
for the sterile hookup and disconnnect, since we're working from home
all week as a precaution against the H1N1/swine flu. We will also
increase Max's calories from TPN until his digestive system can handle
Thu May 7, 2009
We don't know what we're doing for Max's birthday later this month,
but I'm already fantasizing about Kai's later this year. I'm thinking
we'll wait for the weekend (September 12/13), and then celebrate
In Tilden Park. Or
maybe Golden Gate Park.
The health insurance situation
for Berkeley actually seems
to be coming together. Enough for us to commit to renting a house in
the hills there. Enough for Nanny Kate to start letting herself get
really excited for the move, which she signed on for ages ago.
Progress on our yard has been slower. Randy thinks that my idea is
too risky, to postpone the celebration of Max turning three until the
yard is done. Max might end up celebrating his birthday in Tilden or
Golden Gate Park too.
Fri May 8, 2009
Kai cranes his neck as I carry him around the house this morning.
Wherever we go, he stretches to look toward Max's room. He seems
ready to follow up on last night's giggle-fest. Kai sat in Randy's
lap and Max stood in front of him, with both boys squealing as Max
leaned back so Kai could grab his hair and clothes. But Max is
sleeping in late this morning, after staying up past 10:00 playing in
his room, making up for lost time as he turns the corner on his
Sat May 9, 2009
Day. That's what my parents told me, back when I was writing a
heritage report for a 4th grade assignment, when I asked why we didn't
celebrate the Japanese holiday.
We celebrate it this morning at the home
of Nanny Kate's cousin Kai
(or "big Kai", as we've called him since our Kai was born). Randy and
I break out
(carp-shaped flags) for the occasion. Max runs around with three
other kids. Baby Kai and another baby check each other out. All of
the kids, Randy points out to me later, are half-Japanese,
We feel brave enough to set up our koinobori on our back deck upon
returning home. (The flags that we added to big Kai's set-up are
simple enough, but the pole contraption has seemed too intimidating
until today.) Given that we took down our Christmas stockings just a
couple weeks ago, I think every day will be Children's Day around here
for a while too.
Sun May 10, 2009
Every day is Mother's Day, too.
I eat a Wahoo fish taco lunch. Leftovers. By myself. While
standing, in between tasks. Even with Kai taking a whopping 3-hour
nap, the day ends up being too crazy to shower or even get dressed
(though this is in part because I prioritize clearing out closets, in
preparation for our move and for showing the house to potential
renters). Max refuses to nap, and works himself into a frenzy,
flailing with Randy and straining with me until he snaps his g-tube
extension -- a messy break, but not a dangerous one.
So this isn't a particularly special day.
But the craziness of it makes me appreciate all that Randy does day in
and day out -- the late nights, the hookup, the cooking, the garbage
-- everything that lets me feel like I can manage being a mom.
And as I eat my solo lunch, I see a friend's facebook status: She is
thinking of all the mums with children in heaven.
Every day is Mother's Day for me, and I am grateful beyond words.
Mon May 11, 2009
Rotavirus. It's not often that we get definitive answers to Max's ups
and downs in output. But we learn this morning that the stool sample
we sent in with last week's lab draws tested positive for this virus.
Almost all kids get infected with it by the age of five. It's
everywhere. In typical kids, it causes severe diarrhea, which can
lead to dehydration and death if untreated. In Max, it led
to dumping out his ostomy,
and was treatable with a few IV bags of saline for hydration. He is
strong. And he will be even stronger, with his immunity developing as
a result of this exposure. The dumping also may have cleared things
out in a good way -- he now seems to be digesting better than ever.
Tue May 12, 2009
Randy and I dread grocery shopping. But today's trip is productive
and fun. I walk to the store with an empty stroller, and come home
with a baby! Randy bikes around town with the boys. After snacking
at a lake, they make their way to the grocery store. I hand over bags
of milk, juice, apples, lettuce, salad dressing, soup, cherries, and
Max's vegan blueberry muffins. Randy hands over Kai. We head home
together. My stroller load is noticeably heavier now. Randy reports
that his feels about the same.
Wed May 13, 2009
I was thinking that we might need to start inviting girls over for
meals. A couple weeks after Max stopped himself
from gagging on a grape at
cousin Maya's birthday party, he started to gag on a piece of
lettuce at Wahoo Fish Taco (our Mother's Day Eve dinner). A cute girl
in the booth behind him was standing up, watching him. Max looked at
the girl, then managed to chew and swallow. He turned back to the
table, grabbed a chip, turned back to the girl, took a bite from the
chip, and chewed and swallowed it. At least Randy and I were suitably
Tonight, Randy and I engage in actual conversation out at dinner with
Toshio's family, thanks to Kai playing happily in his high chair (a
regular event), while Max is busy eating flatbread pizza (a continuing
Thu May 14, 2009
Sometimes the naive theory is the right one.
Before Kai was born, Randy and I thought the new baby might clear up
some mysteries about Max. How much of his behavior comes from his
condition and all of his associated experiences (or lack of
experiences), and how much is just Max, how he would have acted
At some point, we realized the idea was naive -- that each kid is
totally different from the next, and Kai couldn't possibly help us
interpret Max. And in many ways, our experiences with the kids do
feel like they couldn't be more different. Randy likes to joke that
we spend 10 minutes a day caring for Kai. (I think he forgets that I
still nurse and pump up to two hours a day. But it is
unbelievably easy time in the context of all of Max's medical
There are parallels though, both big and small. A month ago, Kai
played peek-a-boo using the quilt from Auntie Junko, just 5 days of
age earlier than when Max did the
same thing. It didn't seem to matter that Max was headed to the
hospital for a 10-day stay to treat an infection in his blood, then
moving to Boston
to save his liver and his life. The day after peek-a-boo, Kai started
biting while nursing -- at the same point in infancy as not only Max,
but apparently Randy too. It didn't seem to matter that Max was
getting the majority of his nutrition through a permanent IV line, and
permitted only highly-restricted nursings. Luckily, Kai and Max could
be convinced to stop biting. Kai remains perfectly happy to sit and
lie still, and not say much. He seems right on track to follow Max's
late-talking trajectory, and Max's late crawling and walking
trajectory, which followed that of Nana. Even without multiple
abdominal surgeries, projectile neon vomit, and a resulting oral
These parallels could be meaningless. But the naive theory, that they
demonstrate that Max is Max and not his condition, feels reassuringly
Sat May 16, 2009
I am a deer in the headlights when I see that Randy is calling my cell
phone this morning. I'm talking with baba on our land line, after
enjoying breakfast with Max and Kai, then putting Kai down for his
nap. I cannot fathom why Randy would be unable to get out of bed for
whatever he needs to tell me. It's 11:00, a perfectly decent hour for
him to wake after staying up until 4 am for Max's cares. Then I see
that Randy's phone is in Max's hands. Baba and I get a good laugh
over this. I don't answer the call. But the caller is persistent. A
few minutes later, a text message pops up on my screen. Randy
O'Reilly: Ssefgkopogvhbv giop.
Sun May 17, 2009
Someday, Max and Kai will probably fight in the back seat over who
crossed into the other one's space. I'll probably remind them, every
time, of how cute they were back there today. We drive up the canyon,
to the spot where Max waded in
water for the first time, and I waddled along looking ready to
deliver his baby brother. Max falls asleep just before we arrive.
Kai squawks at him to try to wake him up. He wants to play with his
big brother. Then on the way home, Kai falls asleep briefly, and
wakes crying. Max giggles at him to get him to stop. Then he leans
into his carseat around the hairpin turns, whooping at the thrill of
it. Kai giggles at him. The two boys laugh conspiratorially all the
way down the curvy roads back to town.
Mon May 18, 2009
I have a bad feeling about Randy biking off to Boulder Creek with the
boys. I'm the one who hovers to make sure Max and Kai don't fall in,
while Randy acts like they could fend for themselves if they did. He
calls when they get there. I confirm that I can't join them because
He calls back a few minutes later. I pick up, and hear the sound of
rushing water. "Hello? Rand? Hello? Can you hear me? Are you
there?" Then I hear him, muffled, talking to the boys. He must have
dialed me accidentally, phone still in his pocket.
I listen in. At first it is terrifying. "NO Max, you can't go in
that fast water! NO Max, you need to stay close to Daddy! NO Max,
Daddy needs to be able to stay near Kai! Come back, Max!" Then, it
turns reassuring. The tone softens, the reprimands cease. And now I
know: Randy isn't nearly as crazy without me.
Tue May 19, 2009
Randy and I have heard about the dangers of giving
too much praise,
or the wrong kind of praise. But we can't help ourselves from
complimenting Max's smarts and his efforts -- and enjoying the
Max commands me to read Japanese books to him again and again. His
current favorite is an alphabet book, which features scenes like a
duck thanking an ant, because those words all start with the same
Japanese character. Max brings these books to Randy with gentle
encouragement. And whatever Randy tries to read, Max enthusiastically
replies with a high-pitched "Uh huh! Yeah, Daddy!" Randy emerges from
Max's room tonight, concluding that he's actually pretty good at
reading Japanese. It reminds me of a trip to Japan, where Randy
declared that his Japanese was better than mine. When we returned
home and tried to talk with one of my aunts by phone, he realized how
much his Japanese relies on gestures.
Max is more grounded in his appraisal. He calls for me. He is
giddy. "That Japanese book, Mommy! Daddy tried to read it! Daddy
tried to read it all the way across!" Max knows the words are
written vertically. But he acknowledges Randy's efforts. "It's really
Thu May 21, 2009
Max gently unsnaps Kai's pajamas this afternoon, then carries over a
handful of allen wrenches. He announces, "I'm working on baby."
Fri May 22, 2009
Max picks a good fight today.
A new colleague
drops by with his family. The daughter, Ayla, is 2 months older than
Max, and the son is 2 months older than Kai. The daughter has a box
Max recently expanded his
repertoire to include these cookies. He eats one after another,
even as Ayla begins to protest. We should teach him better manners.
But we are thrilled. Max is
fighting to eat cookies! Finally, Ayla says "That's enough. If you
eat too many, you won't feel good and will have to go to the
I'm just as excited about how they resolve the tension. The kids
collaborate on making new, pretend cookies, then savor those
Sat May 23, 2009
Yesterday, Max climbed into the driver's seat of our car, opened the
garage door, and declared, "I'm ready to drive!" Perfect timing.
We head down to the Boulder Creek Festival this evening. Kai's
bedtime is approaching, but Randy and I figure we can at least check
out the scene and gently introduce Max to the idea of going on fair
rides, so he might be ready to try them later in the long weekend.
Max runs over to a car ride. He wants to do it, all by himself. He
is just tall enough to, thanks to a recent growth spurt. Randy straps
him in and leaves. When the ride starts up around the track, Max
jumps to attention, and steers with great seriousness of purpose.
Then he runs over to a neighboring car ride. After devoting equal
care to steering that one, he's ready for the roller coaster. Randy
goes on with him, thinking he needs to provide reassurance. Then they
ride a high-swinging fire engine. Randy is surprised by how thrilling
the rides are. Max only wants more. He refuses to get off the fire
engine. Fortunately, Randy has invested in ride passes by this point,
so they can just stay on to ride again and again. Randy convinces Max
to get off the fire engine only by saying that he can ride the roller
coaster with me next. I coax Max off the roller coaster afterward
only by explaining that I don't have a pass and am out of tokens. He
rides it again with Daddy. Then he goes back for several more rounds
of focused driving, while Randy and I down carnival cuisine.
Kai is a sack of potatoes in my arms, ready for bed. Max is ready for
whatever he says he's ready for.
Sun May 24, 2009
I ask Max what he wants to do today. Nuffing. This is one of
his favorite words recently (as in, What are you thinking
about? Nuffing.), right up there with somefing (as
in, I'm so busy. I'm making somefing.) and my
favorite, cozy (as in, when we're watching a storm come
down, It's nice and cozy inside!).
"Really?" I ask. "Nuffing? I thought you were going to say you
wanted to ride rides all day." A light goes on. Yes! Ride rides
But the day turns too stormy for us to go back to the festival. We
spend it nice and cozy inside.
Mon May 25, 2009
Well, there are always the rides that Max was too small to go on this
When I meet up with him and Kate at the festival today, Max has
already made the rounds, again and again. He's waiting for the car
ride to start. When it does, he doesn't jump to attention, or steer
with seriousness of purpose. He doesn't even touch the wheel. He
lounges, while the cars complete their inevitable laps around the
track. He and Kate move on to the roller coaster. Max seems ready
for new thrills here, too. He doesn't touch the safety bar, holding
his hands high in the air through the whole ride.
At least I think he is seeking thrills. Either that, or he has tuned
into why I lathered him with hand sanitizer Saturday night.
Tue May 26, 2009
Max is helping me feel less guilty.
I've never been interested enough in robotics, given my related
interests in simulating how we think, and Randy's obsession with his
robotics projects. (When I was pregnant with Max, Randy declared a
race between his simulated robot and our baby to learn to walk and
talk and think like a 2-year-old.) He is in D.C. for a couple days,
presenting his work to a funding agency. Nanny Kate
and Nurse Gail are making it
possible. (I have been out of
my wrist splint most of this
month, but still can't pull caps off needles or spike the TPN bag.)
Max is making up for my lack of interest. He can't get enough of
Randy's simulated robot, Emer. "See spinny guy!" is in his top 5
favorite requests of all time, up there with Play Candy Land!" and Read that Japanese book!" Max
sits at Randy's laptop, mesmerized by the sight of Emer learning to
reach for objects that appear in front of him. (Emer doesn't actually
spin, but the viewer's perspective on him can rotate -- a
bells-and-whistles software feature that I've also never been
sufficiently interested in.)
Max won the race against Emer. But last week, he paid Emer (and
Randy) the ultimate compliment. Kai was sitting sideways on Randy's
lap, trying to reach behind himself for something. He rotated his arm
at the shoulder with his elbow locked. Seeing this, Max marveled,
"Kai is like spinny guy! Kai looks just like spinny guy!"
I hope the funding agency is equally impressed.
Max's First Year,
Max's Second Year,
Top of Page,
Max's Fourth Year,
Max's Fifth Year,
Max's Sixth Year
Website copyright 2007 Yuko Munakata (munakata AT colorado.edu).