Sunday, November 30, 2008

Evening update (Sunday 11/30): Another day at the office

Summary: In reaction to his noon feeding, Max had a repeat of his earlier episodes where he spat up some of his feed, his belly got big and taut, his breathing became rapid and shallow and his oxygen sats strayed often into the 80s. The NICU team delayed his 3:00 PM feed until 5:00 PM, by which time his belly had softened and his breathing had slowed. They also gave him a glycerin suppository. On the northern front, they measured his head circumference at around 4:00 PM and found it had decreased 0.5 cm.

We need a term to describe the big freakout when a team of docs and nurses who haven't seen Max before observe him spitting up, having a taut belly and being constipated. It's always a slightly dimished rerun of the Great NEC Scare from a couple of weeks ago.

Carolyn has described a day at the NICU as "a day at the office". And today was a prime example of that phenomenon. I walked in to find Max in the midst of a classic digestive-tract blowup: taut belly, panting, associated desats, etc. The NICU team debated getting an x-ray. Then they kept bringing up an LP. After all, the main problem with Max is his hydrocephalus, so why not tap him? I left the NICU to make a phone call and returned to find everything laid out for an LP.

I sat down with the fellow (effectively, the on-site NICU team leader) and asked him to explain to me the thinking that would lead him to tap Max in response to really bad constipation. He explained that they had done some tests that had ruled out a neurological basis for his tachypnea (ie panting). This didn't strike me as an argument for tapping Max; in fact, quite the opposite. Eventually, he argued himself into the position that he shouldn't really tap Max. As we were talking, we learnt that Max's belly circumference had fallen, and that his tachypnia had stopped. I then had a terrible case of "seller's remorse"--what if the fellow's clinical judgment had been right all along and he was just bad at explaining it to a layman? I was somewhat reassured when they measured his head circ and found that it had decreased from yesterday. So, on balance, I at least think that I didn't do any harm by interfering with the NICU team's original plan of action.

As a general matter, though, I wonder how much management work parents are supposed to do? And whether it helps or hurts? Carolyn notices the occasional error (e.g. running his feed over 60 minutes and not the required 90 minuts), and of course today I affected the treatment course fairly significantly. Does this kind of clinical monitoring decrease errors by the NICU team ("Better double check anything you do to bed 16, those parents parents are detail fiends")? Or does it earn us reputations as problem parents, thus inhibiting the free flow of information from caregivers ("Don't tell the parents of bed 16 that we accidentally ran his last feed twice as fast as we were supposed to--they're total fiends for detail")? It's natural to try to curry favor with the people who are with your children around the clock, and it's disturbing to think that they would be making mistakes if you didn't monitor them.

Midday update (Sunday 11/30)

Carolyn and I spent the morning rearranging bedrooms. When Max comes home, he'll move into the bigger room, and we want Felix settled into the smaller room well before then.

Overnight, Max got a suppository at midnight, which allowed him to stool. His belly is soft. His head circumference has remained stable for the past two days.

We're going into the NICU now.

Saturday, November 29, 2008

The little astronauts

This picture of Max, taken through one of the openings for hands in his isolette that can be sealed, reminds me of pictures of Apollo astronauts on the acceleration couches in their capsule.

Max at GUH

As I've said before, there's a lot about the NICU that reminds me of the manned space program. The babies in their isolettes are little astronauts in their capsules.

The first rule of the NICU is not to talk, not to look, not to intrude. Don't talk to the other parents, don't look at the other babies, or talk above a whisper. But Carolyn and I see the groups of parents huddled around the isolettes, whispering to their children. We don't need to hear them to know what they're saying. Those parents are just saying what mission controllers have been whispering into their headsets forever: You're a long way away, you're travelling very fast, we're worried about you, come back to the Earth, come home, come home, come home.

Evening update (Saturday 11/29) - Holding Pattern

No news is good news so far today -- Max seemed to be holding steady for now. On the northern front: his head circumference either grew slightly or stayed stable (see ME discussion from yesterday). Depending on the measurements and "feel" of his fontanelle, he may have an LP tonight or tomorrow (or not if things stay o.k.). Apparently the neurosurgeons tend to drop by in the late night or very early morning hours. On the southern front: Max is still having problems getting any stools out, and will probably need some help from a suppository later on tonight if past experience is any guide. The dreaded "prune juice" was discussed in doctors' rounds today, but no action yet. Not sure why they are so hesitant to give that to him. Hirschsprung's disease is still being batted around as a possibility, but a definitive diagnosis would require a biopsy of his intestine which they/we want to avoid if possible. Max still shows some swelling/fluid retention but the docs don't seem too worried about that at this point. In less medical news, I got to hold Max for two separate 1.5 hour sessions today, while he was getting fed through his nose tube. He snoozed the whole time and seemed to really like it. Or so I imagine. He's very snuggly and it just feels great to hold him. He's still hooked up to monitors for heart rate, respiratory rate, and oxygen saturation so we have a good read if he is stressed out, mispositioned, etc. while we hold him. It's hard to put him back in the isolette and walk away, especially when his eyes are open and he's peering out. The nurses keep a close eye on him, though, and also hold him sometimes.

Friday, November 28, 2008

Max's head circumference, by the numbers

Last update: 22:34 03-Mar-2009 (data through this night's measurement: blanks indicate no measurements on indicated days)

The figure shows a time series of Max's head circumference, measured in cm. The neurosurgeons and NICU team use a lot of factors when deciding whether to tap a patient, or even whether to install a shunt. However, their decisions seem to depend ultimately on the level and change in head circumference.

For background, I'm told that "normal" growth is between 0.5 cm and 1.0 cm per week, with the maximum normal growth rate happening in the weeks immediately following birth. The curves then flatten out. Max is currently below the median for weight but in the 90th percentile for head circumference. The docs look for "curve jumping", when a patient moves from the 90th to 95th percentile, for example, especially if his weight remains at, e.g., the 40th percentile.

Note that changes on the order 0.5 cm are hard to distinguish from background noise or measurement error. These measurements are taken with measuring tape, by different nurses, at different times of the day, perhaps pre- or post-LP.

Man in Space

The NICU often reminds me of the manned space program, with the dense screens giving mission control detailed information about the status of the astronauts-cum-patients. It's nothing like a trading desk, because of the enforced darkness and quiet. (Well, maybe that's what trading desks look like now). The center of all the attention is the isolette, the enclosed crib that contains the astronaut. I think if you click on the picture below you'll get to see an annotated image of Max's isolette where I've tried to label every feature.

Most mysteriously, the isolette controls are in German. The word "feuchtigkeit" will never just mean "humidity" to me again--I'll always associated it with hours spent at mission control.

The Isolette

In the NICU fridge

In the NICU fridge
Originally uploaded by andreas.lehnert
The NICU has a special refrigerator for breast milk. It's full of triangular buckets that hold the "bullets" of milk. One bullet = one feeding (I think). As you can see from this picture, one of the nurses took some time to customize Max's bucket so it stands out.

Treat the patient, not the x-ray

Carolyn and I spoke with a pediatric neurosurgeon at Children's today who warned us that certain types of docs would scare the crap out of us when discussing Max's hydrocephalus. I've temporarily forgotten which of his fellow professionals he slandered, but I'm sure Cj will remind me. This guy said his maxim was "treat the patient, not the x-ray". He said that some kids just very obviously have problems from a very early age. Aside from terrifying constipation, Max appears to be a hardy young man. Indeed, he is extremely cute and engaging. On this basis, I choose not to worry too much.

Evening Update (Friday 11/28) -- Not a bad day at all

We spent the day at the NICU, and we also spoke with docs at Children's. In sum, not a terrible day at all. In fact, almost a good day.

On the northern front, we met with the attending for the day, who told us that he wasn't shocked by Max's head circumference growth. He also said it's not unusual to get a reduced volume of fluid via the LP, and that some of the CSF leaks out through the puncture anyway. He characterized the situation as a "holding pattern" while we wait to see if Max's body can learn to properly absorb CSF on its own. If Max's body doesn't, Max will need a shunt. But Max's doc doesn't expect any kind of emergent need to tap Max's ventricles in hurry. He's happy to wait a week or two to see what happens.

Max's attending also told us, and perhaps I misheard because I'm optimistic, that, at the moment, the hydrocephalus per se wasn't doing Max any damage. Any damage would have happened within a day or two of birth, but might not become visible until now as the body cleaned up waste, dead blood cells etc and the resulting holes in the white matter were uncovered. Is this bad news or good? It's a dilemma that has divided frequentists and Bayesians for a long time. But the midnight thought that somehow Max is suffering damage right now turns out to be wrong, and that's oddly comforting.

On the southern front, my personal diagnosis is that Max has scary constipation. His bowels don't move, gas builds up, his belly swells and the night staff freak out and quit feeding him. During the day today he got most of one feeding before spitting some of it back up and all of another while Carolyn held him. The high-tech medical team will convene again shortly to decide if it's appropriate to hit Max with the strongest medicine in their arsenal...prune juice. I'm not kidding. Well, he's too young to eat an unripe green apple, which always does the trick for me.

More on our conversations with docs at other hospitals later.

But on balance Carolyn and I feel much, much better this evening than we did this morning.

Morning update (Friday 11/28): A lot of bad news

We've gotten a lot of bad news over the past 12 hours. Max's head circumference grew sharply yesterday afternoon; they tapped him again last night but only got 4 ccs of CSF. This suggests that, perhaps, his CSF is no longer communicating between the ventricles and the spine. And in the ensuing 8 hours his head circ grew again. No word yet on what the plan is.

His belly expanded enough to alarm everyone. They stopped his milk feeding and returned him to IV nutrition. They took an x-ray, presumably looking for signs of infection. That great medical authority, Dr. Google, indicates that people with cerebral palsy often have problems with their digestive systems. Who knows what's going on?

Finally, Max continues to retain fluid and appear somewhat swollen, despite efforts to change his diet, reduce is sodium and increase the protein content of his feeds.

Thursday, November 27, 2008

Evening update (Thursday, 11/27)

Carolyn went into the NICU this morning and had some skin-to-skin time with Max. The nurses took several pictures of Max, and helped him make a card for us. The photos the nurses took are over on our flickr site.

Isn't this the cutest picture ever? (cjh here)
Max Thanksgiving

Max Turkey Foot Card

(But he might have had help from the NICU nurses.)

Max Turkey Foot Card

Max made this card for us

Early morning update (Thursday 11/27)

At this morning's 3:30 AM update, we heard that Max was sleeping pretty deeply after a long day. However, he objected strongly to his bath, as one might expect. In addition, the docs tapped Max and withdrew 14 ccs of CSF. Later today Carolyn will go in while I run Felix around and try to tire him out enough to enjoy an early nap. We're scheduled to attend Len's traditional annual Thanksgi ving Feast at 3:00 PM today.

Wednesday, November 26, 2008

Head bleeds, by the numbers

The docs measure head bleeds on quantitative scales. I'll try to update what we know about Max's head bleeds and associated hydrocephalus (aka the northern front). This may be disturbing, so feel free to skip the rest of this post. Max's head bleeds aren't the most important thing about him.

Our understanding is that Max had a grade 1 or 2 bleed on right side; this is not considered that serious and is generally thought to just be a risk factor for developmental delays. More seriously, Max also has a grade 3 bleed on the left side of his brain. This bleed is "periventricular", meaning that it is mostly inside the ventricle but that it had also involved the surrounding brain tissue. The MRI indicated that the extraventricular bleeding was, it seems, confined to the so-called "white matter" of the brain.

Learning about stressed-out preemies

Max had a big day today (barium study and a scheduled LP later today) so I didn't get him out of his crib. I did have a long conversation with one of his physical therapists about signs of stress in preemie infants. It turns out that there's a subtle but important distinction between preemies who are snuggling and those who are "shutting down" (a severe reaction to stress). Among the signs that your kid is shutting down: color change, grimacing, and As and Bs. All this time I thought he was just smiling at me!

We spoke to the doc who examined his barium study: no problems, and almost certainly not Hirschsprung's Disease. The slow bowel action was attributed, at worst, to his hydrocephalus. At best, it's just normal baby rhythm. The surgeon we spoke with asked about Max's head bleeds and hydrocephalus. He seemed really sad about them; I think we've made our peace with the likely consequences.

As for the incipient fluid-retention crisis, Max's sodium level was high and his protein level was low, so the kidneys were having trouble producing sufficient urine. One of Max's doctors kept talking about his BUN level. All I know about BUN I learnt from classic novel by Samuel Shem, The House of God, where Shem promulgates the nonsense law that BUN + Age = lasix dose. But I couldn't remember it and so missed my chance to impress his doctors. Oh well. Anyway, Max's age is like -0.2 years and they didn't give him lasix. The upshot is that they'll back off the supplemental sodium, increase his supplemental protein and expect his urine production to increase.

On the northern front, a head ultrasound showed a slight increase in ventricular volume, so his doctors will tap him later tonight. They will go for the standard 10 cc draw; earlier rumors of a bigger draw were simply baseless rumors.

The ABDs of the NICU

In the NICU, babies are said to have "A"s and "B"s. In addition, I think they should also be said to have "D"s.

A is for apnea, babies' disquieting habit of forgetting to breathe. Max, and many other preemies, are reminded to breathe by being giving IV caffeine and having air blown at their face (hence Max's continued use of a nasal canula). Many a nurse and doctor has taken us aside to explain that "caffeine is a stimulant". Seven years of grad school taught us that, thanks very much. But if the idea of giving your infant a big cup of coffee every morning strikes you as odd, welcome to the NICU.

B is for bradycardia; in infants, when the heart rate falls below 100 beats per minute. There doesn't seem to be a good explanation for why preemies have bradycardia episodes (or "bradies"), but it seems related to their underdeveloped brains; the episodes are correlated with apneas as well. Usually, Max comes out of apnea/bradycardia episodes on his own, or with gentle prompting.

D is for desaturation; NICU patients have a red light bulb taped to their feet. This measures (sort of) the oxygen saturation of the tissues near the surface of the skin as far as I can tell. This saturation can drop because the infant is experiencing an "A" or "B", or simply for no reason at all that I can divine. Interestingly, Ada's sats were pretty good until the end, but direct measurement of the oxygen content of her blood showed severe oxygen deprivation, so the sat monitor isn't perfect.

Midday update (Wednesday 11/26)

Let's start with news from the southern front. Max had his barium study this morning. Final results won't be in for a while, but Carolyn was able to get some early returns off the record. Broadly speaking, the results looked normal. In addition to testing for Hirschsprung's Disease, the study could also detect other abnormalities of the colon. Early indications are that, at worst, only a small part of Max's colon isn't working right. Interestingly, although the radiologists were able to see some stools in his colon, they didn't see a static mass blocking the system up. Perhaps his constipation is some combination of normal baby variation plus the fact that preemies have a hard time with their intestinal function? Could the southern front resolve on its own without growing into a major disaster requiring surgical intervention? Don't get your hopes up, but stay tuned.

On the northern front, disagreements rage about how much, exactly, Max's head circumference grew last night. The choices are: a lot, or much more than a lot. They'll measure again to break the deadlock. I'm assuming that the doctors have heard of the Law of Large Numbers and thus the underlying issue is too complicated to be fixed by some guy with a tape measure and the ability to average n readings. They may or may not tap Max again today. At his next tap, the neurologists are considering taking more than the standard 10 cc amount of CSF. The doctors don't want to take too much for reasons that are too terrifying to discuss here, but "too much" is usually thought of as being in the 50 cc range, so they could take some more without entering the danger zone.

Not to compound the bad news, but Max's doctors seem to think that he's retaining fluid. If this turns into a big deal, we'll name a new front, but for right now it's just something to watch. Max's eyelids and other sensitive tissues appear swollen. He's gained nearly 250 grams over the past two days. The medical team have brought in Max's dietitian to consult on the nature of the fortification he's getting in his milk. In addition, Max is getting supplemental sodium to make up from sodium loss from lumbar taps: perhaps he's retaining water. The good news is that his kidneys continue to make urine: his output has been, we're told, consistent and, perhaps, appropriate.

In addition to being a collection of symptoms and martial metaphors, Max is also a baby, and a darn cute one. Carolyn forwent skin-to-skin contact because Max had had a big day already. She held him from 9:45 to 11:15 and then again later; he snoozed the whole time. But when Carolyn got to the hospital, Max's eyes were wide open; he was checking out the situation in the radiology lab where his barium study was conducted. Max continues to tolerate his feeds well, and he isn't having apnea, brady, or desat episodes.

Also, Max gave us a Thanksgiving card today (we're told his nurses might have helped although he maintains that this is a base canard). It's too cute for words and we'll try to get some kind of picture asap. Nurse Kiera took his footprints and made a turkey out of them (the more common handprint turkey was ruled out because "Max wouldn't cooperate"). This inscription reads "To Mom, Dad and big brother Felix/From Max aka turkey toes."

Early morning update (11/26)

At the 3:30 AM phone call, we learnt that Max was having a quiet night. On the northern front, Becky reported that his head circumference had increased 0.5 cm, so Max will probably get a tap today. Stay tuned to find out whether the fibrous tissue scare will prompt Max's doctors to install a reservoir or whether they'll press on regardless. On the southern front, Max hadn't pooped by 3:30 AM. He has his barium study to help determine whether he has Hirschsprung's Disease scheduled for this morning.

In other news, the Thanksgiving-themed caps have been knotted and distributed. Pictures as they become available.

Tuesday, November 25, 2008

Midday update (Tuesday 11/25)

Carolyn met with Max's doctors this morning. On the northern front, they are in favor of continuing the lumbar taps until either (1) the hydrocephalus resolves on its own (only a 1 in 10 chance), (2) the taps stop draining fluid or (3) Max is ready for a shunt. Under current medical technology, indwelling shunts are permanent, and have associated risks of infection.

On the southern front, Max pooped this morning (a medium-sized load). The underlying issue remains unknown.

Early morning update (Tuesday, 11/25)

At this morning's 3:30 AM phone call to the NICU, Becky reported no action on either the southern or northern fronts. Max's head circumference was unchanged, as was his girth. He had not pooped.

Read more about the two-front war:
  1. The northern front: Max's head bleeds and first thoughts regarding his resulting hydrocephalus
  2. The southern front: Why we're obsessed with Max's intestinal function

Monday, November 24, 2008

Early thoughts on Max and his hydrocephalus

As described earlier, Max has a condition common to premature infants: hydrocephalus resulting from bleeding into his ventricles. He'll most likely have to have a shunt to control the pressure in his brain. If the Internet is to be believed, something like one million Americans have hydrocephalus and many of them have some form of shunt. In other words, casual empiricism suggests that hundreds of thousands of people are walking around this country with shunts in their brains.

Although we've only started investigating the condition, again, evidence from the Internet suggests that kids with hydrocephalus at birth have a variety of outcomes. Some have fairly significant cognitive and physical problems. Others appear unaffected. We don't yet know the frequency distribution across these outcomes.

As parents, we naturally want Max to have all the brainpower and physical abilities required for him to achieve his own hopes and dreams. We'll be gathering more information about the range of outcomes Max can expect, and how factors, such as physical and occupation therapy, that are under our control, can influence these outcomes.

We already know, however, the most important fact determining Max's future. He is our son.

Max and his head bleeds

Caution: This post gives background what we consider to be the most serious problem facing Max at the moment, and one that will likely stay with him the rest of his life. It can make for upsetting reading.

Around the time he was born, some of the blood vessels that feed into the ventricles of Max's brain ruptured. The ventricles are part of the system that produces and circulates cerebrospinal fluid (CSF). CSF bathes the brain and spine. The bleeding into Max's ventricles, and the associated clots, led to greater-than-normal pressure in the CSF system. Max's ventricles swelled and compressed some of the surrounding brain tissue. As we understand it, the part of the brain around the ventricles are mostly so-called "white matter", which transmit neural impulses to the rest of the body. The "grey matter" is associated with cognition, speech, and other higher-order thought processes.

As a result of the internal swelling, Max's head circumference grew. As an infant, his skull is designed to be subject to the extraordinary forces of birth, and so the kind of pressures that would have put an adult into a coma had no apparent effect on Max other than causing his head to grow.

Max has been treated with an aggressive course of lumbar punctures (aka LPs or taps). Each tap risks introducing bacteria to Max's menenges (the tissue surrounding the brain and spinal column). At first, the taps appeared to work: Max's head circumference fell. However, as I described in Monday's midday update, the taps are becoming harder because Max is developing fibrous tissue near his spine. Further, three or four taps a week isn't considered a long-term strategy. Finally, Max's head circumference grew again over the past few days.

The evidence, then, is that Max's head bleeds aren't resolving themselves. The next step, as described by his doctors, is, in the short term, to insert a tube through the skull into the reservoir directly. With this in place, the doctors won't need to use an LP to relieve increasing brain pressure. At some point soon, probably before he leaves the NICU, this will be replaced by a shunt, a medical appliance connecting his ventricles to (for example) his abdomen. Max will have the shunt for a long time, until medical science figures out how to control hydrocephalus medically.

Max Gets a Bath

Bath time at the NICU
Originally uploaded by andreas.lehnert
Video was taken a few weeks ago, but still gives the sense of his objections to the procedure.

Evening Update (Monday 11/24)

Max had a bath in his spa this evening. (Apparently not all kids in the NICU are lucky enough to have their baths personalized--we don't know which of Georgetown's excellent nurses to thank for this.) Based on past baths, however, Max may not have enjoyed it very much.

Aside from that, not much to report. On the southern front, Max hasn't pooped since last night, although his belly remains soft and and his girth controlled. He's tolerated his feeds well, with little to no residuals or vomiting. We'll wait to see whether his intestines are up to the task of digesting all the milk he's getting. Oh, and no barium enema study today because once we got down to radiology (only Max's second trip out of the NICU, the first being for an MRI and a CAT scan in a single day, a previously unheard of feat), the radiologist said that the study couldn't be done if he had had a suppository in the previous 48 hours. So the good news is that Max didn't have to go through an unnecessary procedure. The bad news is that the barium study is delayed until Wednesday morning, and Max gets not help pooping from suppositories between now and then. Let's hope he's able to do it on his own.

Max's cranial circumference remains unchanged, despite today's earlier tap. The neurosurgeons seem likely to install a reservoir, with a view to eventually installing a shunt.

Midday update (Monday 11/24)

Carolyn went in this morning to hold Max and to monitor medical developments. In addition, a nice man from Georgetown's building services retrieved her keys from the elevator well where they'd fallen last night. Also, Max has passed the 30 day mark, entitling Carolyn and me to free parking in the Georgetown garage. I'll report back on whether we get to use the card-only entrances and exits.

Max currently has two major medical issues: the head bleeds and the gut problems. We'll write more detailed descriptions of each problem, but you might find our earlier description of the Great NEC Scare useful background for Max's gut problems.

On the head bleed front, Max's head circumference grew over the weekend to just about where it was before Saturday's lumbar puncture (aka "tap"). Haifa tapped Max again around 11:30 AM and got about 10 ccs of CSF. The doctors report that Max's spinal area is becoming more fibrous and difficult to puncture. At today's tap, Haifa was able to get in with one stick, but had to move the needle around a little to get fluid. Rather than tap through an increasingly thick mass of fibers, Max's doctors are strongly considering installing a reservoir, which seems to be a kind of permanent tap through the skin of the head. More on this as it develops.

On the gut front (which we can't resist calling the "southern front"), Max pooped last night after Becky gave him a suppository. Max is scheduled for a barium enema study to help determine whether or not he has Hirschsprung's Disease (see The Great NEC Scare for more detail on Hirschsprung's). One of the surgeons dropped by Max's bedside and told Carolyn that he no longer thinks Max has Hirschsprung's, but this is based on, and I quote, "a hunch". The definitive test for Hirschsprung's involves a biopsy of the intestine, something we're eager to avoid. If the southern front problems aren't caused by Hirschsprung's or NEC, what are they caused by? What are the leading candidates? That's a great question, and I look forward to the answers.

In other news, physical therapist Anna dropped by Max's bedside. Max has a big day scheduled (LP plus barium enema) so he won't get physical therapy today. However, Anna did say that when she examined Max on Friday he was gestationally appropriate. Let me translate from medico-jargon: Max was bright-eyed, curious, looking around, waving his arms and legs around and doing all the other things that preemies of his age should be doing. This is good news, tempered only by the fact that, at this age, preemies shouldn't be doing a lot. Nonetheless, if there's one thing I can confidently say about Georgetown's NICU, it's that they never succumb to the soft bigotry of low expectations when it comes to their patients. It's hard work being a preemie in that place; they don't coddle those kids.

Sunday, November 23, 2008

Nightly roundup (Sunday, 11/23)

Carolyn and I each got to hold Max for a couple of hours today. We also got to take his temperature and change his diaper (this is a big deal in the NICU). Nurse Becky reported that Max was bright-eyed and attentive while being examined this evening. To give you an idea of what being a parent with a kid in the NICU is, the report that "you might have a night-owl" is nothing but good news.

Max hasn't stooled since 4:00 AM Saturday morning, something that a generous continued application of suppositories might cure. Of course, all babies have their own rhythms, but we'd like to see Max move his bowels more often. Nurse Becky is keeping an eye on Max's stomach circumference to see if he suddenly inflates again.

Max's head circumference increased again over the past day, and he may need another LP tonight or early tomorrow morning. These LPs drain the fluid that circulates around the brain and spinal column, and which collects in the ventricles of the brain. Max's ventricles are swollen, putting some pressure on the surrounding brain tissue. This isn't actually as dire as it might sound, and will be the subject of a longer post.

Becky may know Max better than any other medical professional at Georgetown. He's in great hands tonight.

Taking it one day at a time

Almost everyone involved in the NICU has advised us to take it "one day at a time". Life in the NICU, they say, is one long roller-coaster (and not the fun kind). Doctors and nurses talk about two steps forward, one step back. What does all this actually mean?

Useful fact: Children in the NICU have a variety of problems, each evolving at its own rate. One day, all indications will be that Problem A has been licked and quickly resolving, while Problem B at least didn't get worse. That's a good day. On another day, all the apparent progress on Problem A will be reversed and Problem B will show worrying signs of not being in any hurry to go away. That's a bad day. Meanwhile, of course, both Problem A and Problem B could have, in the worst case, very bad outcomes down the line for the kids years after they leave the NICU. And thinking about that really will drive you insane.

So taking it "one day at a time" seems to mean, in practical terms, not getting too excited by good days, nor too depressed by bad days and, above all, not to dwell on the potential long-term consequences of all the manifold problems afflicting kids in the NICU.

Further reading:
  1. The great NEC scare of last week: How a bunch of good days for Max came to an end, but also how things didn't turn out as horribly as they might have. Yet.
  2. One of many preemie support website: But this one does use the phrase "roller-coaster" quite often, and is written by NICU nurse and parent of a preemie. And it wins my gratitude for its list of NICU nurse/doctor "Do"s and "Don't"s, where the "Don't"s start with:
    Don't: Call me "Mom." Please ask me what I would prefer to be called.

The great NEC scare of last week

About a week ago, shortly after graduating to an open crib and having been fully weaned from respiratory support and IV nutrition, Max's belly began to swell, he quit stooling, and he showed other signs of sepsis such as an inability to maintain his temperature. It turns out that infants react to infections with falling temperatures, as well as the fevers exhibited by older children. Max's white blood cell counts were elevated, but not terribly so. Nothing was growing in the blood or spinal fluid cultures. So what could be causing his symptoms?

The NICU team ordered x-rays of his gut every 12 hours and started him on a couple of antibiotics rather than wait to see bacteria gain clear purchase in his intestines. They suspected NEC or necrotizing enterocolitis. This is an infection of the gut that is quite common in preemies. Treatments include lengthy bowel rest (i.e. a return to IV nutrition), heavy antibiotics and, in some cases, surgery. The NICU staff returned Max to an isolette, put him back on a nasal canula with a little bit of additional oxygen, and returned him to IV nutrition. After a few days of bowel rest, Max's belly shrank significantly and his blood cultures continued to show no infection.

(Math problem: If 10 percent of preemies get NEC, the test is negative with a 5 percent false negative rate, what is the probability that Max actually has NEC?)

So Max either had a mild case of NEC that was quickly stomped on by the aggressive NICU treatment protocol, or he has something else. The NICU has recently been reintroducing Max to milk, and today he was on 100 percent milk, without supplementary IV nutrition. We'll see how he tolerates it this time. Unlike the last time Max was weaned from IV nutrition, he is getting some respiratory support with a nasal canula blowing room air, and is in an enclosed isolette to keep his temperature regulated. The idea is to minimize both the stress on his system, and to change only one thing at a time.

So what caused Max's bowel problems if not NEC, and might they reappear? The leading candidates, as we understand them, are:
  1. Sodium deficiency caused by Max's fairly regular lumbar punctures (aka "spinal taps")
  2. Something called "Hirschsprung's Disease", a 1:5000 genetic disorder that limits the gut's ability to digest food and move it along the intestine.
  3. A low-grade case of NEC that was stomped on so quickly and thoroughly that the offending bacteria were extirpated before they grew enough to be detected by the doctors.
In the meantime, the NICU staff are watching Max's belly for renewed swelling and also keeping him on a canula. Next week they'll do some tests for Hirschsprung's Disease.

Some useful links (scary links marked for the faint of heart to avoid):
  1. Necrotizing enterocolitis at Wikipedia (warning: scary link)
  2. Hirschsprung's disease study website at Johns Hopkins
  3. Bayes Law at Wikipedia


Originally uploaded by andreas.lehnert
Nurses examine Max.

Max's Spa

Max's Spa
Originally uploaded by andreas.lehnert
This is a picture of the plastic basin the nurses bathe Max in.