Tuesday, June 30, 2009

Max's latest tricks

Carolyn mentioned to me that I hadn't trumpeted Max's latest achievements. Indeed, I came home for a little while this afternoon and got to play with Max; I can confirm that he does have a lot of new tricks. While I was there he rolled over from his back to his front. Actually, I missed the exact moment of triumph because I was playing with my new phone: one minute Max was on his stomach grunting away and then next minute he was on his back. Carolyn was there and saw the whole thing.

Max has, over the past few weeks, really increased his ability to prop himself up on his forearms and control his head while doing so. He still can't hold the position for more than a few seconds, but that's a lot better than even a few weeks ago. Here are a couple of pictures of Max doing a half push-up:

Physical therapy
Carolyn likes this one because it looks like he's riding a bucking bronco

Here Max is pushing himself up:
Working without a nose tube

And here is a picture of Max collapsed on his face after the exertion.
Working without a nose tube
Resting up for the next struggle

In these cycles of pushing up and collapsing, Max never gives up. He'll lie on his face and gather strength for another attempt, even if he needs more and more time to rest.

Max's fine motor skills have also improved. Here he's holding a bottle. He won't do anything useful with it, like sucking it dry, but he can handle it pretty well.
With lion and a bottle
This is a fun toy--what am I supposed to do with it again?

Even though he's only taking 130 to 150 ccs by mouth per day (against a total daily intake of 800 ccs), his oral competence remains good. He doesn't drool. Well, not more than most babies, I suppose. And he's fearless about putting things into his mouth. He's taken to sucking on his thumb:
Sucking thumb
It's like a pacifier that I always have with me

And when he encounters something new, his first instinct is to gnaw on it:
Biting (or gumming)

Speaking of toys Max always has with him, he's always been fascinated by his own feet. He can now grab them, and gets endless pleasure in catching them. The mystery still hasn't worn off:
Grabbing feet
Max started on his back, grabbed his feet and slowly toppled over

Unlike his older brother, Max enjoys pressure against his legs and feet. Where Felix treated the floor like it was hot lava, Max doesn't jerk his legs up when he's lowered onto the ground. He wants to stand:
Standing (aided)

All of this physical therapy and exertion mean that Max's arms and legs are much stronger than Felix's were at the same age. But Felix had much better control of his body, especially his head. This, in a nutshell, is the problem of "tone". That is, the problem Max's brain has in communicating with his muscles. His brain is shouting at his floppy neck and chest to support his head; Max's arms and legs are getting the message loud clear, but can't help much with controlling his head. But with all the demands for action from the brain, the arms and legs have to see some action.

On the crucial issue of Max's head control, we have seen some improvement. As we expected, it's a gradual process with only incremental progress. And, again, as we expected, there have been plenty of setbacks. What didn't I expect? I have been completely surprised by Max's tenacity combined with his unfailing good humor. Max will spend as long as it takes for him to push himself up enough to get a short glimpse over his crib bumpers. When his arms give out he lies on his stomach; he doesn't cry during any of this. He just gathers his strength for the next time he will push himself enough to see the wider world without anyone's help.

Monday, June 29, 2009

A visit to the GI clinic

Carolyn took Max the GI clinic at Children's today, where they claimed to have no record of his appointment. It was just a gentle reminder of what a vortex of chaos Children's can be. No harm came of this little mix-up; Carolyn and Max spent an extra hour or so waiting to be seen. They got in a vigorous physical therapy session during the wait, and Carolyn started a feed through Max's ng tube. V., the GI specialist who has been following Max since his days at the HSC, came in just in time to see Max vomit up the first few ccs of his lunch.

The GI clinic weighed and measured Max. He weighs just over 16 pounds; he's gained about 11 grams/day since he left the HSC. This is a little lower than optimal, but it does include a ten day stretch where Max didn't gain any weight at all. Compared against all 8 month old boys, Max is in the second percentile for weight and the third percentile for length; compared against boys born at the beginning of January (his original due date), Max is in the 25th percentile for weight and the 50th for length.

Carolyn had emailed ahead that Children's neurosurgery service had ruled out an immediate shunt to control Max's hydrocephalus. The GI service, like the pulmonary, developmental and other hospital groups that are following Max, had seemed to be waiting for Max to get a shunt before committing to a treatment plan. My fear had been that, when waiting around for the neurosurgeons to place a shunt wasn't an option, the GI team would recommend a Nissen fundoplication. The less said about this surgical procedure the better. However, the GI service has no love for the Nissen.

At any rate, V. seemed pleased with Max's weight gain and overall shape. She pointed to his legs and said "those are great legs! They are not the legs of a malnourished child."

Standing (aided)

(Max obviously isn't standing, but his legs have lots of muscle on them and he enjoys kicking enthusiastically or, as shown in the picture, putting weight on them.)

Indeed, the GI service seemed content to let Max meander along with an ng tube. According to V., most patients tolerate the ng tube fairly well for prolonged periods. V. says that, in the end, it's the parents and caregivers who finally throw up their hands and give up on the ng tube. The kid sneezes it out in the dead of night when four other things are going wrong and the frazzled parents call Children's demanding surgery the next morning.

The surgery Children's have in mind is a simple tube through the abdominal wall. It's a replacement for the ng tube, but not the radical alteration required in a Nissen. These tubes come in different flavors; V. proposed using a PEG tube, which seems quite noninvasive. Carolyn and I have made an appointment to see a GI doctor who specializes in placing these for the end of July.

Max is getting only a fraction of his nutrition by mouth. V predicts that we are "at least months" away from graduating to mouth-only feeding. However, Max hasn't developed an oral aversion and will take fairly significant volumes from a bottle. He also enjoys gnawing on the furniture, a sovereign right of babies dating from our days living in caves:

Biting (or gumming)

(In this picture, Max is shown enthusiastically gumming one of the foam supports of his play pen.)

Friday, June 26, 2009


The first few days after we brought Max home he was, I can now recognize, completely freaked out. At the time, I thought he was being a little demanding, as was his right. Max insisted on being held as much as possible; and he clearly preferred that the adult holding him be standing upright. Deep in the night, though, he would let me sit in the glider while holding him. The back-and-forth rocking motion soothed him, and of course it was like a narcotic for me. As I rocked him, I slipped into microsleep; that is, I would sleep for just a flash, often much less than a second.

The combination of rocking and brief periods of unconsciousness gave rise to a very curious sensation. Let's say that the glider took one second to complete a single cycle. If I went from spending the whole cycle awake, to sleeping for a tenth of that second, I perceived that the glider was rocking faster. As the sleep microbursts increased in duration, the glider seemed to rock faster and faster. I vividly remember the sensation of frenzied rocking as the glider felt like it had accelerated to 10 or 20 times the normal pace.

Something like that is happening now with my perception of Max. His schedule and mine don't really intersect except on the weekends. I leave before he's awake and I often don't get home until after he's asleep. But on the weekends I spend quite a bit of time with him. It feels like no time since the previous weekend, but of course a whole week has gone by. That's why I'm surprised by the changes I see in Max from weekend to weekend.

When I see Max, he's usually fast asleep on his wedge:


Or he's really ready for bed, with his eyes fluttering at half-mast:

Ready for bed

So I don't know when Max started to suck his thumb, but he's been doing it a lot lately, and getting sort of good at it. I don't know if I'm supposed to discourage this--don't I remember some kids' parents painting their thumbs with a caustic substance to break them of the habit? But I love the fine motor control and lack of oral aversion this demonstrates. For now, I'm encouraging it:

Sucking thumb

Max is showing some other signs of motor control too. He was gumming one of my water bottles enthusiastically:

A big bottle

(Cool toy courtesy of our friends Alex and Maria.) The other morning he pulled his nose tube out, which got the day off to an unusually early start. I stuck around to see what I normally miss in the mornings, and to take some pictures of Max without a nose tube. Here is what I saw:

Smiling at Carolyn

This sight made me realize what I'm missing. It also reminded me of the old days:

Max and Cj's finger (closeup)

So my father's day resolution was to wake up and stop the weeks from flickering by.

Baby bjorn

Sunday, June 14, 2009

Feeding baby birds

Feeding baby birds
Originally uploaded by andreas.lehnert
Carolyn and I spent the weekend playing with Max and Felix. We took Felix to the park both days, but Max is plenty of fun around the house. However, I have noticed that as Max's feeding skills improve he ... demands to be fed! Often! When Max cries we check a list of potential causes: (1) Tired, asking to be put to bed. (2) Has poop in his diaper. To this exhaustive list we must now add another element: (3) Wants bottle. No-one warned us about this when we started speech therapy with him. What's next? Talking?

Friday, June 12, 2009

Progress bar

Max has been having an incredible run of PO feeds (recall that "PO" is jargon for "by mouth"). The old plan had been to make him a little hungry to motivate him to eat. This led to a prolonged period where Max didn't gain weight. Although he was getting enough nutrition each day, his bottle feedings were so exhausting that he burned more calories than he took in.

The revised plan had us offering Max the bottle three times a day for no more than 20 or 30 minutes. (In contrast to the 120 minute Wagnerian dramas that had prevailed.) Anything he didn't take by bottle we'd make up by pumping more, either during the day or at night. The new thinking was that Max needed to gain weight first, while maintaining bottle feeding as an interesting hobby.

Of course, now we're obsessively tracking Max's daily performance because we have to. The new plan requires us to add up his total intake during the day, subtract this figure from 788 ccs (his totaly required daily intake) and divide by 13.5 hours, the amount of time he's on the continuous nighttime feeds. Here's page from the journal:

Feeding journal

Here is a graph showing how much he's taking by bottle (in blue) and how much we have to pump into him (in red) since the new plan went into effect. Note the weekend effect--our friend D. ("the baby whisperer") has an uncanny ability to get Max to take bottles.

I look at this picture and I see an insurmountable mountain of red. (Sort of like my personal finances.) And the GI team and speech therapists are saying that we're coming to the end of the period when we can reasonably keep Max on an ng tube. They're warming us up for a straight g-tube, i.e. a tube through his abdominal wall. Some GI specialists also think that such surgery, because it deranges the normal geometry of the stomach (including the infamous Angle of Hiss), must be accompanied by a Nissen fundoplication. And that is a kind of surgery I consider one step removed from mutilation. I'd like to avoid it if at all possible.

But there's another way of looking at Max's progress in bottle feeding. Is this an exercise in lying to myself with statistics? Or am I being a canny value investor? Hard to say right now, but I look at this picture and I think that Max, who has cheated so many other surgeons, is on track to pull off another flabbergasting performance.

Tuesday, June 9, 2009

Television and children

Last Thursday Carolyn took Max to see PG, a developmental specialist. She was extremely relaxed and easy-going. Interestingly, she and Carolyn spent almost as much time discussing Felix as they did Max. PG had some fascinating insights into the thinking of regular kids. That's a topic for another day.

As far as I can tell, PG made only one hard and fast prohibition: Max can watch no television.

Felix, however, is allowed to watch a little TV. Normally when someone pulls out a camera Felix (and Max) goes extremely solemn. But in this video, he's watching Tom & Jerry and cannot stop laughing. Watching the video I realized that there is no dialogue in Tom & Jerry. This is a strategy I commend to the writers of other shows aimed at children, not to mention several aimed at adults too.

Without a nose tube

Without a nose tube
Originally uploaded by andreas.lehnert
Max pulled out his nose tube early today. Carolyn and D. ("the baby whisperer") gave him all day to be free before they reinserted the tube. It was just as traumatic as you could imagine, with the tube emerging out of his mouth several times.

This picture is also a nice illustration of a phenomenon that occupational therapist C. pointed out to Carolyn today. Notice that Max is hunching his shoulders. He is using shoulder and back muscles to control his head. Of course, he should be trying to use his neck muscles, and C. showed Carolyn a few techniques to get him to relax his shoulders. Max didn't much care for the new way of doing business. But if Max is controlling his head pretty well using the wrong muscles, I hope he can take the next step and figure out how to use the right muscles.

Monday, June 8, 2009

Visit to the phrenologist

Carolyn took Max to Children's hospital today for another CT scan and evaluation by the ebullient neurosurgeon B. At our last visit, a month ago, B noted that Max's ventricles (the brain's internal reservoirs of fluid) had swollen since his first visit. B, whose motto is "let's bet on Max", seesawed about whether to recommend a shunt; in fact, he has a disconcerting habit of debating himself, giving the impression that one is speaking to two doctors: Optimist B ("His ventricles aren't that much bigger") and Pessimist B ("But some younger docs would say, why wait? He's headed in the wrong direction, let's tap him now"). Optimist B: "I say, let's use the best gauge of intracranial pressure, the fontanel". Pessimist B: "But that's not very scientific", etc. Optimist B has always won out so far in our visits.

Indeed, at our last visit, B gave Max four weeks to get his act together. Just two weeks after that, we had a scare when Max's fontanel filled up and he showed a few signs of increased intracranial pressure (ICP). His head circumference had also clearly grown. So Carolyn and I fully expected B to recommend a shunt today, ending Max's long flirtation with hydrocephalus.

As part of Max's evaluation today he had another CT scan. This allows B to compare pictures of Max's brain across time, tracking the swelling of his ventricles. Today, Pessimist B said that maybe, if one squinted, one could make the case that Max's ventricles had grown slightly since his last appointment. This was a pretty weak argument and Optimist B won the day, saying that Max's ventricles were essentially unchanged.

So it was that B again decided that Max was still not (yet) a candidate for a shunt. B plotted Max's head circumference and, although Max is far above the 97.5th percentile, the trajectory looks concave. (Of course, with only three points, the only other two possibilities were linear or convex up.) Today, B gave Max two months before his next evaluation and, at his next appointment, Max won't have to get a CT scan unless he's showing symptoms of ICP. B likes to spare kids the radiation of a CT if possible.

B's decision was based in part on the fact that Max's head circumference growth appeared to be moderating but also simply by Max's clinical presentation. Max's appointment was scheduled on top of his normal morning nap time, so was asleep and kind of groggy when B examined him, but then he perked up and put on his usual display of charm. As B said, "I've seen kids with ICP and this isn't ICP". Even Pessimist B didn't contradict this.

Carolyn asked about the ICP scare we had a couple of weeks ago. B said that everyone's pressure normally fluctuates. He then speculated that Max might have a...and here he stopped talking and made kind of an up-and-down motion with his hand, indicating, presumably, a kind of a cyclical pressure inside his head. In this case, Max might not need a shunt.

In response, Carolyn asked whether fluctuations in pressure might be related to stress or lack of sleep (it's possible that she wasn't thinking of Max here, although he's had his share of both). B paused and then said "that would make a really great research paper." This response leads me to wonder if Pessimist B isn't a kind of internal journal editor, always issuing cautions.

Although B's clinical assessment of Max was extremely sanguine, Carolyn pointed out that all other specialists like to "blame the head"; that is, ascribe Max's reflux/feeding problems/weakness/CP/choose one on his hydrocephalus. This has been an ongoing theme of Max's care, dating all the way back to a now-hilarious episode in November. Indeed, during Carolyn's recent visit to the GI clinic, the GI team said that they'd seen infant eating improve after getting a shunt.

This question caused B to become extremely animated and to issue an almost categorical denial that Max is suffering from increased or abnormal ICP.

In the end, Max again managed to elude the grasp of the neurosurgeons. From what I've been able to dig up, this kind of prolonged uncertainty is unusual. Either kids' heads expand dramatically, or their growth slows sharply, often allowing the rest of the body to catch up. When I saw Max's old friends from the Georgetown NICU yesterday, the only clinical issue they brought up was Max's head. Long after he's over his reflux and eating problems, the resolution of his hydrocephalus will be with him. Ever since we brought Max home his physical presence has been so all-consuming that I haven't had the time or energy to obsess over his hydrocephalus.

Sunday, June 7, 2009

Max is better

Max, Felix and I all seemed to more or less get over the family cold last night (Carolyn may still be afflicted). I had sort of forgotten just what a fun and charming baby Max is because the cold had made him slightly grouchy. Last night I think I saw a look of profound gratitude in his face when he saw his bed. He waited patiently for me to tape his leads on and otherwise prepare him, but he was asleep on his wedge before I could get the velcro completely fastened. He slept peacefully through the whole night, something that, having taken the night shift, I truly appreciated. If Max is asleep, I can replenish the pump, give him his meds and so on in a restful fog, never fully waking up.

This morning, while Max was taking his nap, I was working downstairs and keeping an eye on Max with the video monitor. I heard some stirring and tuned in Max TV (as we call it). I saw Max doing a kind of half pushup: he was holding his head up and had his torso levered up on arms held stiff. This is a trick I've had described to me by Doris and Carolyn, but which I'd never seen. Max was looking around, trying to see someone to play with, no doubt.

Carolyn remarked to me that Max doesn't cry unless he has a reason. The rest of the time he's focused on playing with his feet, shaking his rattle, and trying to get a smile out of passersby. It's unusual behavior for a baby. I happened to see Dr. B., one of his last attendings from Georgetown, today and mentioned myNICU-as-Skinner-box theory: that Max was conditioned by his time in the NICU to please his caregivers. She didn't completely dismiss it; she did say that Max knew what to do to get Georgetown's NICU team to spend an extra few moments with him.

As a measure of how improved Max is from his cold, he let me take a picture of him while he was smiling:


I attended a memorial service at Georgetown Hospital's chapel today for the 30+ NICU patients, including Ada, who died over the past year. It was my first time driving to Georgetown since Max's rather abrupt departure in March. The drive from the office was exactly as I remember it, as was the hospital itself. I didn't venture up to the NICU, but several of the NICU staff were at the service. While chatting with our old friends from the NICU (nurse B!), I promised to bring Max back. However, given our appointment with the phrenologists tomorrow, there's an uncomfortably high chance that Max will be back, but as a patient. I promised to bring him back on his first birthday.

The wall of the NICU is covered with photos of their patients while in the NICU, the overwhelming majority of these pictures are paired with a more recent shot. I admit that it was a real solace to me to see a picture of a very sick-looking baby juxtaposed with a picture of the carefree toddler he became. Of course, a few of the pictures on the wall are singletons, patients who died in the NICU; the NICU team, I've learned, remembers these babies as much, or maybe more, than they remember the others.

I've already started considering which pictures of Max I'll pin to the NICU's wall.

Thursday, June 4, 2009

Another report card

Carolyn took Max back to Children's to visit yet another specialist; in this case, developmental pediatrician Dr. PG. She's in the same business as Georgetown's Dr. Kz, who gave Max his first report card back in December, but has a reputation for breaking bad news more gently and hence is widely beloved by area parents. Dr Kz, by contrast, is widely beloved by area early intervention programs who need straight checklists of abnormal characteristics.

But first, a digression on Max's weight. Specifically, the fact that he hasn't gained any in more than a week. What's more, he's clearly gaining weight in that big skull of his, so the non-head part of him is probably wasting away. At this point, Carolyn is trying to coordinate among the developmental peds, the regular peds, OT, speech, and Children's GI clinic, all of whom are giving slightly conflicting advice. In the end, Carolyn focused on the fact that a few weeks ago we changed Max's feeding to try to get him to take more food by mouth. He usually succeeds, but only after a mighty struggle that burns more calories than he takes in. He's had his chance to turn into a bottle fed baby and he didn't make it this time. The revised plan is for Max to get three or so bottle attempts per day; they will be limited to 20 minutes each. At the end of the day we record what we managed to take in, subtract from 788 ccs (his new daily target volume) and divide by 14 (the number of hours of his night feeding). At last we break free from the tyranny of dividing by 43! We'll reassess in a couple of weeks to see how he's doing. In the back of everyone's mind is the fact that by then Max will likely have, or be about to get, a shunt.

Dr PG lived up to her reputation. She didn't give Max a full physical assessment, so we don't have the same list of skills with pass/fail grades. She did note that Max was developmentally delayed (something one frankly doesn't need to go to medical school to conclude). PG did, however, rule out the most catastrophically bad outcomes. At this age, one can diagnose severe CP, and Max appears to be in the clear. Of course, as the neurosurgeons say, "you're never the same after the air hits your brain." Max is doing okay right now but the air has yet to his brain.

According to Dr. PG, preemies are addicted to exactly the wrong kind of stimulus. If it flashes light and beeps, preemies like it even though Dr. PG argued that this was precisely unhelpful. This explains the zero TV policy recommended for preemies. In addition, preemies can't say no stimulation: why focus on one toy when there are two nearby? And a jangly music box?

Instead, she has a set of guidelines that, as far as I can tell, boil down to the dictum of asking how something compares to watching television, and doing the opposite. So: no toys that emit electronic beeps or flash lights and, of course, only one toy at a time. The toys he has should be small and easy for him to grab and manipulate. It's good for him to see his hand wrapped around the toy while waving it in front of his face. Max loves watching ceiling fans, but, of course, that's just the preemie background at work. We've been advised to switch the fan off. Finally, it's great for Max to watch Felix, but he doesn't need a toy at the same time.

I think Dr PG advises us to encourage Max to watch his brother for two reasons. First, Felix is a real human being, a species hospital babies like Max may be unfamiliar with. Second, Felix is moving around unpredictably in three dimensional space. From experience I can say the NORAD would have difficulty tracking Felix accurately at certain times of day. It has to be great practice at recognizing spatial relationships.

Just as interesting as these guidelines were the things Dr. PG saw in Max that she thought were positive. One really struck me. Dr. PG noted that Max would smile before had been smiled at. In other words, he isn't aping what he sees other people doing--he's simply and honestly delighted at the world.

Tuesday, June 2, 2009

A trip to the apnea/pulmonary clinic

Carolyn took Max for a long-scheduled visit to the apnea/pulmonary care clinic at Children's today; this is one of the many specialists that Max is seeing. For the most part, Max put on his usual charm offensive. However, Max has a disconcerting habit of crying if he sees another child crying. For a long time we thought he was just copying his older brother, but having seen him around other babies, Carolyn confirms that he seems to pick up their distress via baby telegraph. Needless to say, there are plenty of unhappy children at Children's.

The monitor to which we attach Max every night has been recording his breathing and heart patterns, as well as any alarms, time between the alarm and its reset, and other indicators of parental diligence. We initially viewed the monitor with suspicion because we knew it would eventually disgorge all of our secrets to the pulmonary care team, but then we forgot about it.

I'm happy to say that the pulmonary care team read the monitor's memory and gave us high marks for consistent use. They also told us that the few times the alarm went off were false positives: Max's heart or breathing patterns may have tripped the alarm, but they weren't real episodes of bradycardia, tachycardia or apnea. As a hospital baby, Max has always slept peacefully through any manner of noises, including his monitor's alarm. Had Carolyn and I been hooked up to monitors over the past couple of months, however, they would have told a different story. There's nothing quite like being catapulted out of Lethe's sweet embrace by a klaxon announcing that your child needs emergency care.

The pulmonary/apnea team tried to talk us out of continued use of the monitor. After all, they said, Max has gone 43 days at home without an incident. We, however, aren't so sanguine. Max hasn't had an episode..yet. I was surprised to hear that we had been home for 43 days. I don't know if it feels like just a single day or an eternity, but there's something nice and concrete about the number: 43 days.

Max is suffering from what Carolyn calls the "family cold." We've all got it to some degree or another. Dark theories abound regarding who among us brought in the infection. For political reasons, we've decided to blame the only member of the family who can't talk, although we don't have a theory where Max might have gotten it. To some extent, Max's cold symptoms made his lung function appear temporarily worse. Nonetheless, the pulmonary team doubled his dose of diuretic in order to keep his lungs clear of fluid. We go back in a month for a further checkup.