Wednesday, December 31, 2008

Evening update (Wednesday 12/31)

(Another long and tense post: diligent readers will be rewarded with a video at the very end.)

Carolyn sat at Max's bedside this morning and observed physical therapist A. working with Max. The physical therapists are our current favorite NICU team members because they have seen him progress from a very low state of function to his present condition, and hence think that he might continue to get his act together so that in the future he might be able to eat and poop at the same time (the autonomic nervous system equivalent of walking and chewing gum). Carolyn is still pretty sick with what her doctor has now diagnosed as a viral infection and is trying not to infect Max or his father.

With the radiology machine fixed, Max got his barium swallowing study today. The NICU team fed Max some barium-laced milk while observing him through a fluoroscope (allowing them to take a kind of x-ray "movie" and observe the path of the milk through his body). They were looking for signs that Max was taking milk into his lungs; that is, "aspirating" his milk. They believe that his significant episode of respiratory distress yesterday, which followed some bottle feeding, was the result of Max aspirating his milk. They also think that Max's persistent desats are caused by him aspirating food that comes back up his esophagus ("reflux") after he's been fed. They're giving him various anti-reflux medications that are commonly advertised on TV, but Max is not the drug companies' target demographic.

The barium study didn't show that he aspirated very much (if any) of his feed, but the NICU team don't consider it conclusive evidence because he took a long time to suck down the 13 ccs that they finally convinced him to swallow. (This in itself was good news: this is the most Max has ever swallowed on his own.) They think that Max might be able to properly direct small amounts, given slowly, to his stomach and away from his lungs, but that he would aspirate larger amounts given over a shorter period. They intend to repeat the study in a few days, after a period of rest and strengthening. In that time, Max will not get food via bottle.

I spoke to Dr. K. about the outlook and plan for Max. He thinks that Max's brain is having trouble organizing proper swallowing. To get food down one's throat requires the correct sequence of contracting and relaxing muscles in the esophagus (I believe this is commonly called peristalsis but I'm too tired to look it up). Also, Max isn't properly closing the sphincter at the bottom of the esophagus to prevent food from coming back up the throat, where he then aspirates it. Persistently aspirating food is bad for the lung, leading to bouts of pneumonia and improper lung development. If Max doesn't get the hang of swallowing food, he may need a kind of surgery on his esophagus. Dr. K. emphasized that this was a long way off, but that he wanted to mention it so that it wouldn't come as a surprise to us if someone brought it up down the line.

Dr. K. said that some babies with this problem have no other issues, but that it's commonly seen in babies with other neurological deficits. And with Max's history of head bleeds and hydrocephalus, it would certainly make sense that his difficulty swallowing is one manifestation of a broader problem. Dr. K. said that he likes to think that babies differ in their potential and that parents should work to help their children achieve that potential. He also said that the best predictor of a baby's eventual success is the educational attainment of its parents. (Someone must have told Dr. K. that Max's mother just published a book and hence has attained about as much education as it's possible to get.)

Carolyn and I accept that Max may indeed have significant neurological problems to deal with. But we've also watched him to struggle to get the hang of very basic bodily functions, including pushing out stool and breathing successfully. However, he's gotten the hang of those two life skills (although I wouldn't yet give him great grades in either, he continues to make progress). To us, eating just seems like a harder class than pooping or breathing, and we expect that it will take him some time to pass it. At first, he'll get horrible grades and sometimes scare the dickens out of us, but over time he'll get the hang of it. Is this just denial? Of course it is. But without a robust sense of denial, we'd never sign up for insane projects such as writing textbooks or papers about the subprime crisis. Denial is what allows us to fantasize about the possibilities beyond our grasp but within our reach.

Spending Dec. 31st in hospitals is getting to be a habit. A year ago today, Felix had surgery to repair a ruptured bladder (see picture below). That turned out to have a happy ending, and we remain convinced that this will too.
At Children's

Although we can't rule out that Felix's hospital stay didn't do him permanent damage. Consider his pronunciation of "fork":

Tuesday, December 30, 2008

Evening update (Tuesday 12/30)

Just a quick update. After this morning's big success with oral feeding, we were disappointed to learn that, at the 8:00 PM feeding, Max had a fairly major desat (oxygen sats briefly into the 40s) that required what sounds like a little respiratory rodeo. They suctioned out a fairly big blob of mucus, suggesting that Max is indeed aspirating some of his oral feeds. The barium study that would have confirmed this had to be cancelled because a part broke on the machine. No word on when that's going to be rescheduled. Carolyn phoned the NICU back and asked them to stop trying to bottle feed Max for at least the rest of the night.

My own theory is that Max currently can't walk and chew gum at the same time, i.e. poop and suck-swallow-breathe. This morning's success might be because Max wasn't straining at stool. Tonight, however, it was a different story, as Max continues to push out small dirty diapers, turning red etc in the process. This is why I only give him a "C-" at pooping---it still takes him a lot longer, and greater effort, than it really should.

Head circumference updated too.

Morning update (Tuesday 12/30)

Carolyn phoned in a report with more details on Max's first report card (see below). But first, the quick update: When Carolyn arrived the nurses had started Max's feed a little early. He was clearly hungry and actively rooting. They gave him a bottle and he sucked down all 10 ccs on offer. He did desat a little during the feed--this is his usual pattern and has led the NICU team to suspect Max of silent aspiration. Thus, today's scheduled barium swallowing study (now scheduled for 2:00 PM). But I think this is the first time that Max managed to swallow all 10 ccs.

Carolyn pulled aside physical therapist A. for more information on Dr. Kz's assessment from yesterday. All kidding aside, Dr. Kz did paint a pretty grim picture. Physical therapist A. agreed that, given Max's head bleeds, hydrocephalus and generally difficult course, he would have to be closely watched. That said, her view was far less dire than the impression we'd taken away from Dr Kz's assessment. Indeed, A. went so far as to imply that most parents react to Dr Kz's analyses the way we did. In short, Dr Kz is a notoriously tough grader. (Some of my favorite teachers were tough graders: nothing wrong with that, but it's good to know what the curve is.) The assessment itself is physically tough on babies--they're woken up, unswaddled and the manipulated, forced to endure lights being shone in the eyes and so on.

To recap, Dr Kz identified two main areas of concern: Max's autonomous nervous system (ANS) and what she identified as an abnormal motor system. Dr Kz was concerned that Max could not seem to regulate his breathing following a feeding or being jostled. A agreed that Max does indeed desat often, but that he was improving over time. Max does manage to eventually calm himself these days, a trick he didn't know a month ago.

On Max's abnormal motor system, A agreed that she'd like to see Max move his arms, legs and head more. As she pointed out, though, Max is spending a lot of mental and physical energy just figuring out how to breathe. Moreover, he does sometimes bicycle his legs, wave his arms around and lift his head. Furthermore, as we know, he has a very big head, so it's to be expected that he'd have trouble moving it around. A really encouraged us to help Max gain control of his arms and legs, and to do some tummy time style neck exercises with him.

Perhaps the most reassuring thing that A told Carolyn was that she didn't see any of the big red flags that point towards cerebal palsy (CP). For example, if Max's legs were always stiff, or always floppy, A would be far more concerned. Further, A has watched Max make significant progress over time. A cautioned that the real test will be when Max is six months old. If, at that time, he hasn't managed to get his ANS organized or gain control of his arm, leg and neck muscles, his problems might be fairly severe.

Mainly, we're relieved that A., who has been watching Max almost as long as we have, had come to some of the same conclusions we had. Namely, Max has had a truly rough course in the NICU, that he got off to a slow start, but that he's headed in the right direction and just, somehow, doesn't seem like a baby with major problems.

Monday, December 29, 2008

Max's first report card (Monday 12/29)

(Note-this is a long post; I'm including a fun video at the end as a reward if you make it all the way through.)

Max got his first report card today, and it reminds me a lot of the report cards I used to get back in the 9th grade (not a high point). More on that below. Also, the NICU team are going to do a barium study tomorrow morning of Max's swallowing. He may be aspirating his milk, i.e. drawing it into his lungs, which would explain his trouble maintaining his oxygen saturation, especially at the end of his feedings. The attending, Dr. K., mentioned that if Max can't get the hang of swallowing he might need a tube directly into his stomach. However, Dr. K. is rapidly gaining ground for the title of Gloomiest NICU Doc, so Carolyn and I aren't obsessing over this too much.

Returning to the day's report card: Dr. Kz, a physician specializing in neonatal development, evaluated Max today. She graded him as "satisfactory" or "needs improvement" in at least four distinct areas.

First, the bad news. Max's weaknesses are autonomic nervous system instability and an abnormal motor system. The autonomic nervous system is the part of the brain that regulates things that don't usually require conscious thought, such digestion and breathing. Dr Kz. noted that Max's measured oxygen saturation would fall when he was picked up, jostled about, etc., suggesting that Max has trouble regulating his breathing. Carolyn and I understood, intellectually, that unlike most babies, Max was having trouble with his breathing and digestion, but we're a little depressed to see Max do poorly in this particular class. The good news is that he has many years to get it right. And, let's not forget, he outright flunked Pooping 101 the first time he took it, and now seems to be scraping by with a "C-". At this rate, he'll be a star pupil in a few more months.

Max also got a poor grade for an "abnormal motor system". We don't quite understand this yet, but it seems to have something to do with Max having relatively low muscle tone in his trunk and relatively higher tone in his arms. Interestingly, Dr. Kz. didn't note an asymmetric response--he reacted the same on both sides of his body. Max's head bleeds were asymmetric, so the fact that this isn't translating into an asymmetric physical response might be good news--I'm treating it that way.

Dr Kz gave us some suggested therapy for Max's abnormal motor system; as a side benefit, she settled a long-running parenting debate. The primary therapy appears to be tummy time, and other exercises designed to strength his neck muscles. Dr Kz suggested that we help Max get "organized" (a word she used quite often) by keeping his arms close to his chest when changing his diaper, soothing him etc. This effectively ended the debate we'd been having about whether it was better to coddle Max or to expose him to the rigors of life. It appears that coddling--defined as keeping Max happy when changing him or moving him--is better than trying to toughen him up by letting him try to withstand these stresses without help. That has always been our instinct anyway.

And now, the good news. Max got good grades for his alertness level and his hearing/reaction to noises. That Dr. Kz. found Max to be alert was a surprise, given his ability to play possum. She also said that Max reacted appropriately to sounds and would track voices. Dr Kz suggested that Max would react well to being soothed by being spoken or sung to. In her defense, Dr Kz had not heard me murder "Snake Baked A Hoecake" when she made this recommendation.

More good news: Max was clearly rooting today (an unforgettable sight) and, according to Carolyn, obviously very hungry when it was time for his 5:30 PM feeding. Nurse N. reports that at his 5:30 PM feeding Max was offered 10 ccs and managed to successfully swallow 5 ccs.

This has been a long and somewhat painful post. As a reward, a video of Max's older brother discussing how to pronounce "fire truck".

Sunday, December 28, 2008

Evening Update (Sunday 12/28)

I spent the evening at the NICU until the mandatory 7:00 PM break. Carolyn is keeping away while she fights off a nasty case of the epizootic. (So far, I've been spared.) When I walked into the step-down NICU, I noticed that the lights were turned up higher than in the critical care NICU, and that there was new age music playing softly. The step down NICU truly is a different world. On my way out, I looked through the windows into the critical care section. It was dim, and every baby seemed to be hooked up to a Christmas tree of drug pumps. Carolyn and I weren't looking forward to seeing Max graduate to the step down unit because we liked the higher nurse to patient ratio and the easy proximity to the doctors. But he's now much stronger than the patients in the critical care section.

The NICU team have cleared Max to try to take 5 to 10 ccs by mouth at each feeding (with the remaining 50+ ccs delivered via nasal tube as before). Nurse C. reported that Max got 5 ccs down on his own but then didn't seem to be interested in getting the remaining amount. She reported that Max coughed up a biggish blob of mucus all on his own--he didn't require suction.

I held Max vertically for about an hour, but then he seemed to start working hard to breathe and his sats dropped off slightly. I moved him to a horizontal position, which he seemed to enjoy much more. He was asleep most of the time, although he did open his eyes at me a couple of times. He kept on eyelid cracked for a while too. I'm not sure if he was playing possum or not. His hair is starting to grow in, including his eyebrows. To my eye, he seems set--like his brother--to inherit his mother's eyebrows.

Saturday, December 27, 2008

Playing Possum

Here's a video taken on Christmas day showing Max opening one eye to check out the scene before deciding whether to admit to wakefulness. His eyes are really swollen because of the eye exam he'd had earlier in the day (the same eye exam that cleared him of ROP). In the background you can hear the chaos of CCN1, the high-intensity NICU that Max recently graduated from. I particularly enjoy the x-ray technician's warning shout--you can hear a man yelling "x ray!" in the background.

Evening update (Saturday 12/27)

(Late night update: Head circumference at 36.0 cm, weight is 3175 grams, Nurse M. reports Max loved his bath tonight and no ill effects from the vaccines or any other problems.)

Carolyn spent the afternoon at the NICU and was almost giddy when she came home. This morning, speech therapist A. got Max to swallow all 5 ccs he was offered from a bottle. Carolyn (not a professional speech therapist) was able to get 3 ccs down him by mouth. She reports that Max seemed "strong"--his sats were stable in the mid 90s (albeit with support from the cannula), he sucked enthusiastically on his pacifier and he was bright-eyed and alert. Of course, we're not trained neurosurgeons, but Carolyn thought his fontanel felt quite soft today. Max got two immunizations today while she was holding him and, other than a few brief squawks of protest, Max took it well. Carolyn, on the other hand, has come down with a bit of a cold and had to wear a mask and gown while holding Max today.

Carolyn also reminded me of some very good news that I had forgotten about. A bi-weekly ritual at the NICU is the visit from the ophthalmologist, who is looking for retinopathy of prematurity (ROP) and other eye problems. At his visit last Thursday (Christmas Day!), the ophthalmologist declared Max free of ROP. This means his eyes don't need to be examined until his six-month appointment. (For a useful article on ROP, click here.)

Max continues to "play possum": that is, pretend to be asleep. He will crack open a single eyelid (a trick I've never seen anyone else manage) to survey his surroundings before deciding whether to open both eyes. It's a really endearing habit--nothing's cuter than a baby feigning sleep. I'm very curious to see whether this is a habit that will stay with him as he grows up or whether, once he's out of the relatively chaotic NICU environment and home with his parents and brother, he'll overcome his trepidation when approaching the world.

Friday, December 26, 2008

Max in the step-down NICU

(Late-night update: Max indeed is taking his time figuring out how to breathe without support--the NICU team put him back on a cannula this afternoon. Maybe next time!)

I stopped by the NICU today to see Max in the step-down NICU, aka "CCN2". It's a much cheerier place than his previous home: fewer babies, and none of them in serious trouble. As you can see from the picture, Max wasn't on a nasal cannula while I was there. His sats were quite good--averaging around 95---although by the time I left he'd had a few desats. It may take him a while to get the hang of breathing.

As always, pictures do't do him justice because he closes his eyes whenever I pull my camera out. At other times, he's alert and looking around. I like to think that Max was checking out his swank new address. It's a big change from the critical-care nursery. No doubt he misses some of his friends, but with luck they'll be along shortly to join him.

Late night update (Friday 12/26)

As a Christmas present, Max moved to "CCN2" aka the "step down NICU". Carolyn and I both held him for extended periods today. I got him to take 3 ccs of milk from a bottle (only 57 ccs to go!) without freaking out. He also sucked heartily on a pacifier for me. The head circ reading for tonight was stable.

On a light note, the NIC unit ran out of preemie diaper wipes. We, of course, have a huge stash of them at home. I brought in most of our supply, where they were distributed to babies in CCN1 and CNN2. Carolyn also bought artisinal chocolates for the nurses, who, as a rule, really are too skinny.

Cj and I have mixed emotions about seeing Max "graduate" to the less-intensive side of the NICU. When I was on the high intensity side today--Max's home since he was born---I noticed just how many very, very sick babies it has. Max isn't in an isolette anymore, nor does he have a Christmas tree of medications running into him. Shocking as it feels, it is time for Max to make way for the really sick babies.

Thursday, December 25, 2008

Video of Max at the NIC unit on Christmas Day

I like this video for a couple of reasons. Max opens one eye just a slit to check out the scene (a common habit of his). Also, you can hear the constant din of the NICU in the background. Listen closely and you can hear several different alarms going off and at least one upset baby. None of the alarms pertain to Max, although the crying baby is a friend of his.

Max in his NICU crib

This might be the last picture of Max in his crib at the Level One NICU. Word is that he was due to be transferred to the Level Two NIC unit today during the shift change between 7:00 PM and 8:00 PM. If so, he would join the short-timers who just need a little hand-holding before they're ready to go home with mom and dad. I hope he doesn't corrupt the other babies in the Level Two NICU with the habits he picked up in the "big house" of the Level One NIC unit.

Morning update (Thursday 12/25)

Just a quick update this morning. We're planning on going in to the NICU in shifts today. The big news is that the nurses have been trying to bottle-feed Max when possible (sometimes he's too sleepy to try to eat). So far the results have been pretty encouraging. Max isn't swallowing everything, but he's not choking on it either. He seems to be getting some milk into his stomach, but is mostly just spitting it out. He put on another 90 grams of weight last night (so for the past few nights that's 100+, 100+, 0, 90+). Head circumference unchanged at 36.0 cm.

Wednesday, December 24, 2008

Midday update (Wednesday 12/24)

Carolyn got into the NICU before Max's 8:30 AM scheduled cares (diaper change, temperature, etc). She reports that the NICU team have moved Max's crib once again, to a location closer to the other patient Nurse A. is overseeing.

Carolyn reports that Max is doing really well. He's tolerated his feeds well, even though they're now on a compressed 45 minute schedule. Max was pretty drowsy this morning, so they mostly just snuggled. At rounds, Dr. M. asked the nurse to try bottle-feeding Max tonight. In addition, the NICU team will increase the amount of milk Max gets in his feeds. Carolyn thought he looked a little less puffy than yesterday, and of course he didn't gain any weight over night, an indication that he may be eliminating some retained fluids.

We also learnt that the NICU team have scheduled an assessment by a developmental specialist for next week. This is usually done as a prelude to going home, but they're going to start gathering information on this early. In related news, they will not order an MRI to check for periventricular leukomalacia, or PVL, until just before discharge. (Warning: link is not for the faint of heart.) If Max does have severe PVL it wouldn't change their treatment course in the NICU, so they prefer not to gather this information until as late as possible.

Morning update (Wednesday 12/24)

Max's head circumference was stable overnight and he filled a diaper around 2:30 AM. He had a quiet night with no As or Bs and very few Ds. The past two nights, Max gained 100+ grams, but tonight he didn't gain any weight (it was possible that he was retaining fluid those earlier nights). Max's weight is exactly 3000 grams, or possibly 3 kgs.

Nurse K. gave Max his scheduled bath and, according to her, he loved it. She let him splash around in Max's Spa a bit longer than strictly necessary.

Tuesday, December 23, 2008

Evening update (Tuesday 12/23)

Nurse K. reports that Max is resting extremely comfortably, without even his usual brief desats into the 80s. In the poop journal entry, he had a big stool in his 8:30 PM diaper. Max will be getting a bath tonight. No head measurement yet tonight, and we're going to bed now so it'll have to wait for the 3:30 AM update.

When Carolyn and I were with Max today we worked with him on his sucking skills. (Carolyn got some one-on-one time with speech therapist S. and was able to pass along the techniques she gleaned to me.)

How the NICU has changed us

This Friday will mark our ninth week of involvement with the neonatal intensive care unit (NICU). Our high-intensity exposure to esoteric knowledge has, as one would expect, changed us. As Bernard Shaw remarked, "every profession is a conspiracy against the laity." We've spent the past nine weeks deeply enmeshed with the initiates of medical knowledge.

We have force-fed ourselves knowledge about the human body. We now have a rudimentary grasp of the functioning of the body's cerebrospinal fluid system, including, most critically, its ventrical reservoirs; by the same token, we know a lot more than we did about hydrocephalus and ventriculomegaly. When I was a teenager I used to suffer from pulmonary oedema; this was just an introductory course in the many pathologies of the infant lung that we have learnt about. We know what look for in a blood gas reading. Scientists claim to have discovered a 'second brain' in the gut? It makes perfect sense to us given that the intestines have to operate as a miniature chemical plant and thus need to be densely populated with nerve cells. Dropsy isn't just a term from medieval texts. We know what kidneys do.

We understand medical hierarchies: attending, fellow and resident, not to mention the difference between the charge nurse and a regular nurse. We understand that when a doctor says "medical" he or she means a treatment course using drugs, as opposed to a "surgical" course (the typical surgical prescription is best understood by the old dictum "when in doubt, cut it out"). We understand that a resident will want to do a spinal tap purely for the aesthetic pleasure of the thing. Surgeons will want, quite badly, to crack skulls open. It is in the nature of residents and surgeons (and speech pathologist and physical therapists and on and on) to want to exercise their skills. Indeed, I think that surgeons literally can't see the world as anything other than a place that could really benefit from a couple of hours under the knife.

As I've remarked before, managing patient care in a NICU is the job that, even though we never suspected it or asked for it, we've been training for all our professional lives. Indeed, Carolyn even wrote a very long book about managing public and nonprofit organization (despite its eye-popping fees, the NICU surely doesn't turn a profit).

And then there are the parts of the hospital that even the people who work there might not be familiar with. We know where the best meals and parking are. We can get coffee at all hours in Georgetown. We're on a first-name basis with the hospital concierges. We know when each entrance closes. We have free parking.

So how has all of this changed us? It's probably a question better put to our friends. But, for the first time in my life, I notice that I have become a very aggressive driver. My route from the office to Georgetown at rush hour takes me through a labyrinth of off ramps and slip roads not normally used by commuters. I zip in empty lanes past clogged lines of cars waiting to get onto a bridge; sometimes a driver--from either ignorance or selfishness--will find the temptation of the empty lane too much and will try to skip the line and cut back in at the very last moment. The drivers who paid their dues in the slow lane often refuse to let him in, forcing the rogue driver to block my lane as he fruitlessly signals to get back into the proper lane. Once I might have waited patiently a couple of car lengths back while the diplomatic incident resolved itself. Now I roar along in my lane at full speed, indeed, with my fog lamps on all the better to loosen the bowels of the rogue driver. If there's a shoulder I'll take it at speed, leaving just an inch between my bumper and his, and perhaps with a satisfying spray of gravel as well. When did I turn into this guy? I used to be the meekest driver on the road. Tomorrow, I resolve to drive more like I used to, before I knew about hydrocephalus, dropsy, ventriculomegaly, the nature of surgeons, blood gasses, and all the rest.

Monday, December 22, 2008

Late night update (Monday 12/22)

Bonus update!

New head circumference reading for tonight-- 36.0 cm again. Nurse K. noticed that Max's stocking (attached to his crib) is stuffed with hospital-grade pacifiers. The supply cabinet at the NICU is chronically short of these items; nurses speculate darkly about the thriving black market in "soothies". One might worry about leaving such precious commodities hanging out in the open. However, now weighing in at 6.6 lbs, we consider Max well able to defend his property in the mean streets of the NICU. (Just don't ask him to suck 0r breathe on his own.)

Nurse K. reported that Max didn't enjoy being naked on the scale--too much like the final judgment one presumes. He calmed down after he got his clothes back on. By the way, his laundress replaced all of his dirty and extremely smelly clothing today.

As we reported earlier, Max was introduced to the bouncy seat today. Nurse J. reported that the minute the vibrating feature was activated, his eyes popped wide open.

Pictures of the precious pacifiers.

Evening update (Monday 12/22)

As promised, the head circumference figure has been updated. I now have an intimate and personal understanding of time series measurement error. It seems that 36.0 is the new 35.5, which was the new 35.0 which in turn replaced 34.5 as our favorite magic number. Dr. T. said that Max is on the appropriate growth curve for infants in the 95th percentile of head circumference ("In a room of 10 babies, Max would have bigger heads than 9 of them").

In related news, Dr. T. told us that the head ultrasound showed a shrinking of Max's ventricles, as, in Dr. T.'s words, "his hydrocephalus resolves itself." Carolyn and I, of course, are not nearly so sanguine, but it's good news and we'll take it.

We also talked to Dr. T. about Max's stop-and-go approach to such basic baby reflexes as rooting and sucking. According to Dr. T., these reflexes aren't programmed into babies until the 35th week of gestation. For the most part, babies born at 34 weeks or sooner require a feeding tube to survive. And, as we're learning, one week in the outside world doesn't equate to a week in the uterine environment. Dr. T. said that they have a ward full of "suckers and growers", meaning babies that are otherwise healthy but just were born a little too soon to have suck/root reflexes built in. (Actually, she used a different phrase than "suckers and growers" but neither Cj nor I can remember it at the moment--saved for future updates.)

Dr. T. said that Max is now on a more normal preemie course. He seems to have gotten the hang of dirtying diapers and his hydrocephalus is, if not resolved, at least not causing active problems. She is firmly convinced that Max's respiratory distress is caused by reflux from his feedings. Max now has to learn the suck-swallow-breathe dance steps, get some exposure to different positions such as sitting up and sitting somewhat reclined, and get strong enough so that he can keep his food down. Max now weighs more than six pounds. He's on his way.

Midday update (Monday 12/22)

Carolyn got to the NICU this morning to find Max in a bouncy seat. We've come a long way from the scrap of flesh pinned down in an isolette. According to speech therapist S. Max rooted actively and then sucked steadily for 15 minutes. During this morning's head ultrasound, Max got sort of agitated, and S. gave him a pacifier, and by sucking on it he soothed himself. Suck! Root! Self-regulation! S. was giddy from success and tried him on a bottle; he spat the milk back out at her. Baby steps, baby steps.

The NICU team use the results of the head ultrasound to determine the evolution of Max's ventriculomegaly and, more generally, his hydrocephalus. We've found it better for our mental health not to speculate about the results.

(Last night's head circ reading was 36.0 cm; the head circumference figure will reappear tonight I swear.)

Sunday, December 21, 2008

Afternoon update (Sunday 12/21)

The Christmas slowdown at the NICU continues: the team rearranged beds to take advantage of the lull in business, and now Max is in Ada's old spot. We're not sure how we feel about this. It's certainly a little disorienting. When Ada was in the spot, though, she had so much extra support equipment that her isolette was pushed out into the main space. Max's crib is tucked back into the bay, affording us more privacy, as well as giving the space a very different feel.

Carolyn went in this morning to make the 8:30 AM cares, and I spelled her at 11:00 AM. Max is still on a nasal cannula and seems to be thriving on it. He seems to be getting the hang of stooling, producing dirty diapers all on his own, without the assistance of Carolyn's knees-to-chest exercise program.

I spoke with the speech therapist. She said that they are not going to try Max with a bottle again for a while, certainly not until he develops a strong and consistent suck reflex. (To feed himself, Max has to get the hang of the complicated suck-swallow-breathe pattern.) The idea of teaching a reflex seems strange, especially one as basic as the suck. To me, it seems that nature would have hard-wired the suck reflex into the deepest parts of a baby's brain: what else could be more important? According to speech therapist S., breathing is more important. If a baby is in respiratory distress, he won't suck or root or do much of anything besides turn his attention inward and try to draw breath. It's certainly true that Max has very little respiratory cushion to fall back on. Although he does well enough when cradled gently, jostling him about just slightly can cause his sats to fall. As Max gets stronger, therefore, the speech therapists expect him to become more interested in sucking. Speech therapist S. encouraged us to stimulate Max's lips and tongue with a pacifier, and to introduce to his mouth whenever possible.

(Last night's head circ reading was 36.0 cm; the graph will be updated tomorrow night.)

Saturday, December 20, 2008

Evening update (Saturday 12/20)

Yesterday Max marked eight weeks in the NICU. Or, put another way, had he been born today, he would have been considered full term. Carolyn spent most of the day with Max. She considers herself to Max's laundress or scullery maid and she berated herself for not exchanging his laundry today. Carolyn is also getting pretty good at coaxing Max to suck on his pacifier. The NICU have a special green pacifier--Carolyn picked up several and put them in Max's stocking. (Don't tell Max: I don't want to ruin the surprise for him.)

Friday, December 19, 2008

Evening Update (Friday 12/19)

(Late night update: Speaking of measurement error, Nurse C. measured Max's head circ at 35.0 cm. I also forgot to mention that the NICU team have ordered a head ultrasound for Sunday night so the results will be waiting for them when they return on Monday morning.)

Carolyn and I, between us, managed to spend almost all of the day with Max. Carolyn was in for morning rounds at 8:30 AM and stayed until about 1:00 PM. I rolled in around 4:00 PM and stayed until I was kicked out a little after 7:00 PM. While I was with him I tried to interest Max in sucking on a pacifier but he wasn't going for it. I did, however, get to change a very dirty diaper. The NICU's policy of "clustering cares", i.e. requiring that all procedures such as heel sticks, diaper changes, temperature monitoring etc are all crammed into a single care session held once every three hours, means that their patients are better rested and calmer than the typical hospital patient, but it also means that Max can sometimes get two full loads into a single diaper. Parents notice these things.

The regular NICU crew are all taking off for the weekend, leaving their charges in the hands of a fresh crew until Monday morning. Given the importance that the NICU docs tend to put on how Max's fontanel feels, Carolyn asked all of the incoming docs to feel Max's head this afternoon so they would have a baseline to compare against if there are any changes. Max nurse last night measured his head circumference at 36.0 cm but--charmingly--admitted that she might have gotten it wrong (as a rule, the medical profession staunchly denies that measurement error exists).

(Reminder: the head circumference graph won't be updated until Sunday evening for technical reasons.)

Thursday, December 18, 2008

Evening Update (Thursday 12/18)

Max had a lot of visitors today. Carolyn and her parents dropped by, as did Kerry. By all accounts he put on quite a performance of cuteness. By the time I got to the NICU about an hour or so later, Max was completely pooped. I held him for just less than an hour until the nurses kicked me out at 7:15 or so. It turns out that the 7:00 to 7:45 shift change is closed door to protect the privacy of patients. (Or so I was told.) When I saw Max he was just finishing a feed and doing extremely well. He's still on a nasal cannula but it is just blowing room air up his nose. I couldn't believe it: his oxygen saturation was so good that I thought he must have been on supplemental oxygen. He had one brief brady while I was holding him but it was all over before I knew what was happening.

In a brief conversation, Dr. M. was surprisingly upbeat about Max's lungs. Yes, according to Dr. M., quite possibly Max has chronic lung disease, which sounds really scary even though I haven't googled it yet. (If you ever want a good scare, type some symptoms into google.) However, Dr. M. assured me that the lung grows until age 2, so that the infant grows out of chronic lung disease. That's by far the most optimistic thing he's said in the two months I've known him.

And if the lung grows until age 2, that means Felix's lungs just quit growing. He went in for his routine peds physical this morning. We learnt that he is very heavy for his age, and very, very, very tall. Mysteriously, he decided to start speaking in simple sentences just before his appointment. By the time I got home he had worked his way up to "I want more yogurt".

(Administrative note: For technical reasons, the head circumference graph won't be updated until Sunday. So far all quiet on the northern front.)

Morning update (Thursday 12/18)

Just a quick update: Max had a quiet night. Nurse C. reported one minor brady/desat at the 3:30 call. Max dropped down right after a feeding but popped back up on his own; there seemed to be some milk at the back of his throat. In today's poop journal entry: a large deposit at 2:00 AM (no word whether Nurse C., as advised, held off on his bath). The NICU team put Max on a mild diuretic yesterday, one that takes a while to operate. Nurse C. reports that Max's diapers were twice as heavy as normal and that look less puffy--i.e. oedemic.

Updates to the head circumference figure will be suspended for technical reasons until this weekend.

Wednesday, December 17, 2008

Evening update (Wednesday 12/17)

Max is doing well and having a quiet night.

I spoke with Nurse C., who reports that Max is doing well. He's still on a nasal cannula but not supplemental oxygen. He's only had brief desats and no bradys. She measured his head circumference at 35.75 cm, which she thinks is the same as today's 35.5 cm finding. In other words, basically unchanged over the past few days.

Okay this next part is gross (feel free to skip to the next paragraph). Max has tolerated his feeds well, with litte or no residual. When they check for "residuals" after a feed, they pull back on a syringe attached to the feeding tube--sucking out whatever might be left in the stomach. I think they're looking for signs of infection or digestive problems. During the Great NEC Scares, they reported that when they checked his residuals they didn't find "anything green". Tonight, I asked Nurse C. if Max had had any residuals: "Only 1 cc of undigested milk which I gave right back to him." (In other words: reinjected into his stomach.)

Finally, Max is due for a bath some time tonight. He hasn't dropped stool since 5:00 AM this morning, so I encouraged Nurse C. to hold the bath until after any blowout.

Late afternoon update (Wednesday 12/17)

Carolyn was away from GU from 11 to 3 attending some tiresome function at her husband's office. While she was away, Nurse J. reports that Max did really well---only a couple of minor desats. He was getting a little supplemental oxygen through his cannula, though. Carolyn held him from 3 to 5, and at some point noticed that his oxygen hose had fallen out so that he was getting nothing through his cannula, not even forced room air so that's good news. He's tolerated his feeds well.

The NICU team seem convinced that his feeding tube is in the right place, and he didn't seem to have problems with his feeds today. Carolyn reports that Max was resting comfortable a few minutes ago.

Mid-morning update (Wednesday 12/17)

Today's watchword is "measurement error".

Carolyn went in this morning quite early. When she got there, Max was repeating the sort of desat I had seen last night in reaction to his feeding, despite the fact that the feed was going in over an hour (and the same thing happened overnight too). Last night Carolyn developed the theory that Max's new feeding tube was to blame for the sudden onslaught of problems eating, although the NICU team were dubious. The pure time series correlation is suspicious in my view.

At morning rounds, Dr. M. looked at the chart and said "something's not right here." Carolyn advanced her theory again, Dr. M. gave it a sympathetic hearing. He said that sometimes the feeding tube is too long and curves back up the esophagus. The NICU team determine the how much of the feeding tube's to run into the baby based on the baby's length, and Carolyn noticed that more of the tube was inside Max now than before (the tubes have length markings on them). But we know from peeking in his chart that measuring Max's length is an error-prone business, unless he has the habit of routinely shrinking and growing 2-3 cm every few days. The NICU team are going to look seriously at the feeding tube issue: not quite sure how they're going to do that.

Nurse J. measured Max's head circ again at morning rounds, and again got a circ of 35.5 cm (35.5 is the new 35.0). You may recall that Nurse A. got a reading of 36.0 cm at last night's official measurement, and that's what is currently up on the spreadsheet. A couple of members of the NICU team felt Max's fontanel and said it felt "good". Ominously, absolutely no-one suggested that Max's recent problems might be related to hydrocephalus. This had been their fallback explanation for everything up until now, including a now-hilarious episode where they tried to treat Max's constipation with a spinal tap.

For now, Max is resting comfortably, and is back on a nasal cannula to give him a little respiratory support.

Morning update (Wednesday 12/17)

It sounds like Max had a hard night. Nurse A. reported a couple of bradys, each associated with one of his feeds. She measured his head circumference at 36.0 cm, an increase of +0.5cm. Carolyn is going in early this morning to find out more.

Tuesday, December 16, 2008

Evening update (Tuesday 12/16)

Carolyn and I just missed each other by minutes at the NICU today thanks to the freezing rain. I got there around 6:00 PM (Dr. M.: "I've always wondered what you keep in that backpack of yours Mr Lehnert!", Me: "That's between me and the New World Order"). I found Max just finishing one of his new-fangled 30 minute feeds. Cj had told me earlier that Max seemed to be tolerating his new compressed feeding schedule, even if the speech therapy hadn't gone so well.

Carolyn had told me also that she had gotten to see Max without his feeding tube. (They are replaced once per week.) She got to see Max without any obvious lines--quite a privilege. He's starting to look like a real baby to me, even with a feeding tube in. She left before they put in the new one and I arrived after it had gone in.

Nurse J. and I chatted about Max; she told me that he had a fairly major desat/brady when she'd put in the new feeding tube. I think it was probably a pretty tense situation, although he was resting comfortably when I arrived. Then I got to hold him while he was finishing up his feed. However, Max's measured oxygen saturation fell fairly steeply and wouldn't come up. I put Max back in his crib and Nurse J. suctioned out some thick mucus he'd coughed up. She also gave him supplemental oxygen. I would say that for half an hour, or perhaps more, Max's sats were extremely volatile and prone to sudden plunges.

The doctors asked the nurses to measure his head circumference. Still 35.5 cm (unchanged from last night)! And later I heard that the fontanel still felt good. The nurses, with a doctor looking on, used supplemental oxygen and various positioning tricks (on his stomach, on his back with neck support etc) as Max gradually got his breathing and saturation under control.

With these sorts of events I always have two questions: (1) If his heart is beating away and he's breathing quickly and deeply, how could oxygen not get to his blood stream? The mechanical answer (obvious in hindsight) is that the efficiency of oxygen transfer in his lungs must be impaired. But this opens a further host of questions, none of which I care to speculate on tonight. (2) How much damage do Max's organs, particularly his brain, suffer during these episodes? What's acceptable? I can say that the NICU team responded to this with alacrity, which worries me, but then they didn't respond with the big guns, which reassures me--they used the "blow by" which just puffs oxygen in the baby's face. No nasal canula, no face mask. I asked Nurse J. about this and it took her a while to fumble up the approved NICU answer ("Most babies in this room go through this and they do just fine"). Along the way, I got something that sounded closer to the truth. They don't know how much damage it does. They don't think it's a lot, but it's something they want to avoid.

So Max had three pretty severe episodes today: one associated with his attempt to eat, one when he has his new feeding tube inserted, and one at the end of his 5:30 PM feeding. It was a little exciting when I was there, but I didn't see Max's heart rate drop. If anything, he was a little tachycardic. Dr B. claimed responsibility for the last of the three because of her decision to go to a compressed feeding schedule and said that Max wasn't quite ready for it. She ordered that his feeds be lengthened to an hour to give him time to rest and recover. Nurse J. suggested hitting Max with another Lasix dose. Apparently, oedema can be associated with respiratory distress. (As a chronic sufferer of HAPE in my younger days, I don't know why I'm so surprised.) Dr B. responded that she wanted to only change one variable at a time. Like all of a sudden we're using the scientific method to treat patients?

Carolyn and I are turning back into managers again, after a few weeks of being parents. Oh well. Carolyn phoned Dr. B. to make sure that Max would get plenty of attention tonight. Dr. B. had rejiggered the staffing schedule so that Max would get "maximal attention" tonight. Dr. B. also said that Max was doing much better than when I saw him. They're considering whether to hit Max with more caffeine to help control his oedema. Maybe my theory of coffee withdrawal wasn't so crackpot after all?

Afternoon update (Tuesday 12/16)

I just spoke with Carolyn. She feels much better about Max. Shortly after she and I spoke earlier today, Max's breathing became easier and his sats stabilized. Carolyn's theory is that Max had had a stressful morning, with speech therapy, faster feeding, an eye exam (more on that below) and of course the inimitable Dr. M. looming nearby. She held him for two hours this afternoon and he did really well.

In today's poop journal entry: Max produced a couple of moderate-sized stools. Interestingly, he tends to produce them as his diaper is being changed. This is either remarkable timing or shows devious planning; more likely, Max simply needs a little jostling to get himself moving.

Premature infants can suffer from retinopathy of prematurity, where abnormal blood vessels grow into the retina, leading to damage to the retina. All the NICU babies are checked for ROP weekly. So far, Max hasn't shown signs of ROP, but there's still time. However, the ophthalmologist said that Max's response to light indicates that his IVH/hydrocephalus hasn't directly affected his sight. Eyes are just parts of the brain that grew towards the light so they're really closely connected with the main part of the brain, and problems such as hydrocephalus can be detected in the eye as well. However, the ophthalmologist said that he didn't see any signs of pressure from the brain at the back of the eye.

Midday update (Tuesday 12/16)

The NICU team consider last night's measured head growth to be normal (after all, Max gets 0.5 cm/week and it's been about a week since his head grew from 34.5 to 35.0). They're also not seeing other signs of increased ventricular distention such as a bulging fontanel. Dr. M., one of the gloomier attendings, felt his fontanel and pronounced it "fine". He also told Carolyn not to be too optimistic just because the neuro service signed off on Max: it just means that they won't visit him every day on their rounds. They've still got an OR warm for him, I suppose. Dr. M. also pointed out that Max's breathing and eating problems could be related to hydrocephalus.

Today's bright spot is provided by the poop journal: the boy seems to be getting the hang of it, although it still seems to take him a lot of red-faced straining. He's delivered plenty of dirty diapers over the past 24 hours.

And now, on to the rest of the morning's developments.

Carolyn reports that today's speech therapy session did not go well. As a reminder, speech therapy is not about elocution at this age. It's about getting the mechanics of suck-swallow-breathe right. Max did well on stage 1: sucking, but then when given a bottle containing actual milk he responded with a brady/desat. The speech therapists take this seriously because it could be a sign that the milk is going down the trachea. Dr. M. was not comforting as he watched this performance. He insisted that Max has "got to get himself together" and that half-measures such as practicing sucking with a pacifier wouldn't be sufficient. (Later, the speech therapist clarified that some practice with a pacifier might be good for Max. He's actually not that good at sucking yet.) In the past, NICU docs and nurses have told us that learning to eat is like flipping a light switch: one day they're not doing it, the next they take to it like ducks to water (or babies to milk). Today's NICU team didn't have any such reassuring words for Carolyn. Dr. M. was quick to remind Carolyn that babies with neurological issues can have trouble eating.

Next, Max's breathing problems. To review, Max has trouble maintaining his oxygen saturation levels in the required range. In addition, his breathing often feels labored--far too deep and fast. In the past, his breathing problems were related to his GI issues. Indeed, during the worst phases of his GI freakouts he had to have respiratory support. Now he is without respiratory support, and the last of the caffeine is leaving his system. (My own theory that Max is going through coffee withdrawal has been dismissed with the curt observation "babies metabolize caffeine differently than adults"). Carolyn felt that Max's breathing seemed more labored today. The apnea study that the NICU ran over the past two days revealed that Max has "disorganized breathing". Dr. M. was quick to remind Carolyn that babies with neurological issues can have trouble with organized breathing.

In other news, the NICU team have decreased the time over which Max's feeds are pumped into him to 30 minutes, down from 45 minutes. Max didn't tolerate their previous attempt to go to from 60 minutes to 30 minutes; we'll see how he does this time.

So what's going on? Some depressing possibilities are that Max's disorganization isn't temporary, that it's related either to some underlying process in his brain or to his hydrocephalus. Additionally, instead of a single unifying reason for all of his problems, I worry that he has trouble eating and stooling because of a neurological deficit, and trouble breathing because of a mysterious problem with his lungs, perhaps the same problem that his sister had.

A benign view--one that I favor--is that Max is slow to learn everything: how to pass stool, how to eat, and how to control his breathing. Could be related to his hydrocephalus, or it could just be the way he is, and that--here's the important part--he will eventually figure everything out. He's had a very rough 7 weeks . The Great NEC Scare hit about three weeks after he was born and lasted until last week.

As Georgetown's Christmas present to us all, Dr. M. will be the attending on call through the holidays. Sure he's dour, but the man does grow on you after a while.

Monday, December 15, 2008

Bonus late-night post (12/15)

Update from 3:30 AM phone call: Max's head circ up +0.5 cm to 35.5 cm.

We really shouldn't stay up for the nightly head circumference measurement (usually around 11:00 PM), but our loss of sleep is your gain. When I called tonight, however, Nurse S. told me that they're going to weigh Max, measure his head circumference, change his diaper etc all at once, and not for another half or so. This is known as "clustering of cares" and of course it's a great thing. However, she assured me that Max was "pooping up a storm and sleeping like an angel". Earlier, she had reported that Max was enthusiastically sucking on a pacifier. That's enough for tonight. The head circumference will have to wait until the 3:30 AM phone call.

Evening Update (Monday 12/15)

I've decided that it's not realistic to swear off keeping a poop journal, at least for the near future. I'm reminded of an episode from Felix's early life that we called "The Great Bowel Movement Crisis of 2006." Sure, it was funny and sort of gross, but it was also actually kind of scary. So, be forewarned that detailed descriptions of Max's intestinal function will continue to feature prominently.

Carolyn spent all day with Max, and I took over after work. They're supposed to kick parents out from 7:00 to 7:45 (AM and PM) every day for the shift change, but for NICU pros like me they'll relax the rule. As a result I got to hold Max for two hours. I think he was extremely hungry before his 6:00 PM feeding began.

While I was holding him, he twisted his mouth to one side and stuck his tongue out like he was expecting to find something to suck on. Then he found his fingers and began sucking enthusiastically on them. Felix did both of these things in his very early days; I had completely forgotten about them until now. (Indeed, I feel like I'm going to need a class on remedial infant care because I seem to have forgotten everything about taking care of little babies.) I think I'm watching the formation of the rooting reflex. Most babies arrive in this world with a fully formed set of reflexes, but they must have developed in utero; after all, fetuses don't have these reflexes at conception, right? My crackpot theory is that I'm getting to watch development that would normally have been hidden from view.

For the most part, Max was quiet and comfortable while I held him. However, he would sometimes visibly struggle to pass stool. During these struggles his sats would dip, setting off one of the many NICU alarms. Indeed, Max's labile oxygen saturation is one of our current major concerns, and they seems to be related to his difficulty passing stool. You'll be happy to know that Nurse S. reports that Max had a couple of blowouts and appears more comfortable. I have another crackpot theory to expain this. When Felix was very young he had trouble passing stool because he couldn't coordinate his muscles: the trick is to relax the sphincter while tensing the belly. The easier thing to do is to tense both at the same time, which does no good. Max's whole story has been of slow development: slow to get his CSF system in order, slow to get his digestive system working, slow to root. So why shouldn't he be slow to learn the trick to emptying his bowels? It is a bit counterintuitive if you think about it.

So let's list our current set of worries:
  1. Max's CSF system might get out of kilter again, bringing back his hydrocephalus and a grinning bunch of phrenologists.
  2. Max has continued oedema of his lower extremities and groin. That's going to have to clear up sooner or later, right?
  3. Max is not kidding anyone that he's figured out how to poop stress-free.
  4. Finally, a constant nagging worry: What if Max falls victim to one of the many disasters that seem to float around the NICU, looking for victims?
Those of us with mild, sub-clinical OCD find making lists to be soothing.

In other news, the NICU continues to lose business, on net. Even with the step-down NICU patients and a couple of new admissions today, the place is feeling pretty empty. Also, I have the distinct impression that the NICU docs don't find Max that interesting anymore. They just don't come by as often as they used to, and when they do they can't keep their eyes from straying to the monitors over nearby isolettes. For the first time in my life I'm happy not to have my kid be the center of attention.

Morning update (12/15)

Carolyn reports that Max was snoozing very deeply this morning. However, as we were talking, physical therapists J. and A. walked into the NICU, so Max is about to be jerked out of sleep. The speech therapist, however, is out sick today, so Max will get a slight break.

According to the NICU team, Max's special monitor went off a couple of times over the night, mainly responding to desats. The extra monitor comes off today sometime. Dr. H. intends to repeat the exercise once more before Max leaves. I'm still not quite sure what this was intended to discover. However, Carolyn did learn that before Max leaves the hospital, we bring in a car seat and they wire him up when he's sitting in it to see whether he can tolerate it.

The big news is that the neuro service have "released" Max. This means that they won't come by every day to examine Max, feel his fontanel etc. The nurses will continue to measure his head circumference and the NICU team will feel his fontanel as part of their regular examinations, but Max is no longer in the cross-hairs of the neurosurgeons as a likely surgical candidate. Let's keep our fingers crossed.

Evening update (Sunday 12/14)

Max's head circumference remains stable at 35.0 cm. Dr. P. told Carolyn that the phrenology team had been by earlier, and that they looked really depressed. They said that, oh bitter fate, Max might not even need a head shunt, much less a direct ventricle tap. (To be clear: Dr. P. does not refer to the neuro service as phrenologists.) Carolyn and I are allowing ourselves a tiny window of hope. Which immediately brings to mind Emily Dickinson's poem "Hope is the Thing with Feathers". But how much more apt is Woody Allen's book Without Feathers? As he points out:
How wrong Emily Dickinson was! Hope is not "the thing with feathers". The thing with feathers has turned to be my nephew. I must take him to a specialist in Zurich.
Dickinson claimed that hope "never asked a crumb of me." But the hope that Max might resolve his CSF imbalance on his own, without major surgical intervention, has Carolyn and me giving in to every superstitious impulse. Personally, I live in fear of karmic retribution in this life, so I'm practicing random acts of kindness at a frenzied pace. I may even stop calling the neurologists "phrenologists", because it could be bad karma to make even gentle fun of the guys who might have to operate on your son's brain. And that's worth far more than a crumb to me.

In other news, Nurse B. (who reminds you of your high school class valedictorian) reports that finding Max in his new crib is like a game of "Where's Waldo". Carolyn agreed that, indeed, Max's crib is now pretty "tricked out". I'll grant that it's not the typical utilitarian box that Max inhabited for most of his life (so far). But it's easy to find Max even in his fancy new crib: just follow all the wires.

But judge for yourself. Can you find Max in this picture? (Click on picture for the surprise answer.)

Carolyn and the boys

Sunday, December 14, 2008

Max's new home, explained

Clicking on this picture should show an annotated photo of Max's new environment, now complete with stimulating toys. Note that Max is sleeping on his stomach. It turns out that any baby can be safely put to sleep on its stomach, so long as it is wired to two distinct monitors and kept in a level 1 NICU.

Afternoon update (Sunday 12/14)

Carolyn and I took Felix in to see his little brother. Felix pronounces "Max" as "Mack" or sometimes "Baby Mack". The visit went much better than I had expected. No IV trees were knocked over, Max was generally taken to be a good thing, and the tears didn't come until Felix and I left without Carolyn (an unfortunate logistical requirement). Also, Max is out of his lucite box and into a real -- albeit hospital issue -- crib. Nurse B. (who looks like the captain of a junior high swim team) stocked it with all of the crib extras Carolyn brought over last night. I'll add an annotated picture in a separate post.

We learnt a little more about this mysterious study that Dr. H. ordered yesterday. Max is hooked up to twice as many monitors as usual, with the extra leads plugged into a box kept inside his crib. When his statistics look sufficiently distressed the box emits a piercing shriek designed to wake him up and get him breathing again. The designers of this little apparatus failed to take into consideration that (a) NICU babies are hardened against alarms of all types; and (b) one cannot buy a child's toy these days that doesn't blast distorted music or speech out of a cunningly hidden speaker. Many a parent knows the pleasure of attacking an innocent-looking stuffed bunny with a phillips-head screwdriver in the middle of the night after it bellowed "Ha ha ha that tickles" one too many times.

For now, here is a shot of Max in his new crib:
In the big boy crib

Saturday, December 13, 2008

Evening update (Saturday 12/13)

Carolyn spent most of the day with Max, including a couple of hours of skin-to-skin time. Speaking from experience, this leaves parent and child totally blissed out. Max had a good day on balance, although Carolyn reports that when she got to the NICU the team were deciding what to do about a fairly significant desat that Max had experienced earlier in the day. The NICU attending (who rotates through the pediatric outpatient service) ordered a study of Max's saturation level, which seems to involve tracking the time series of his sats over some period. These sorts of studies are, I gather, often ordered on preemies that have already gone home; the NICU attending figured she'd get started on this one early.

The big news is that Max is moving out of his lucite box and into a real crib. Carolyn brought in a mobile and an elephant-themed mirror that plays "Hickory Dickory Dock." We'll have pictures tomorrow.

At the evening update, I learnt that Max is very comfortable. Nurse Becky took his head circumference a little early and measured it at 35 cm, unchanged from the past few days. Max is tolerating his vitamin supplement well. The hope is that this will gradually alleviate his anemia.

Morning update (Saturday 12/13)

At this morning's 3:30 call, Carolyn asked all the questions I forgot to last night. Max's head circumference remained stable at 35 cm. He is tolerating his feeds well, despite the vitamin supplement. And, even though I swore off further poop journal entries, he had a full-sized load in his 8:30 PM diaper last night.

Given that he hasn't had another bout of GI freakout, even lacking Dr. P.'s journal articles, I think the prospect that Max has Hirschsprung's Disease has to be diminishing. Although perhaps Max has ultra-short Hirschsprung's? Which raises the question: Ultrashort Hirschsprung's: myth or reality?

Guide to Max's new environment

I took a photo showing the important features of Max's environment, now that he's out of the isolette. He has far fewer lines and hoses running into him, but he's still wired up like Neal Armstrong.

If you click on the picture, you should get a version with all the salient features clearly noted.

Friday, December 12, 2008

Late night update (Friday 12/12)

Although Carolyn spent much of the day with Max, I didn't make it to the NICU until after putting Felix to bed. As I walked through the NICU doors I was met by Dr. P., who looked downcast. He grabbed my shoulder and said "Mr. Lehnert, I'm so sorry."

He was, of course, apologizing for not having emailed me the journal articles on Hirschsprung's Disease we had discussed a couple of weeks ago when we were debating whether or not to tap Max in order to relieve his constipation (see "Another day at the office" from 11/30). Max? Max was fine of course. Although Dr. P. was preoccupied with a couple of truly sick babies, I did have a chance to quietly discuss with him the merits of greeting a parent walking into the NICU with the first words "I'm so sorry". That said, I currently have four different coauthors and two journal editors hounding me so I understand the overwhelming guilt Dr. P. felt for not getting me the articles he'd promised.

There have been big changes in the NICU over the past couple of days. The so-called "step down" NICU has been temporarily shuttered and its few occupants moved to Max's wing, which is the high-intensity half of the NICU. Even with the addition of the extra babies, the NICU felt empty. Dr. P. said that business always fell off during Christmas but then exploded on January 1. Two questions struck me. First: Could this possibly be true? Especially because the NICU doesn't take full term babies; its stock in trade is babies who arrive unexpectedly. What mechanism would introduce a seasonal in premature deliveries? There's a J. Pub. Econ. article in this for an enterprising graduate student (a suggestion I kept from Dr. P., who clearly doesn't need another academic obligation right now). The second question that struck me was: It's Christmas?

Nurse Becky (who I wish to have canonized as soon as possible) felt that the lull in NICU business was more likely simple chance, and that its proximity to Christmas was coincidence. And here's another blow to magical thinking: I left a quiet and peaceful NICU tonight to be greeted by the brightest full moon of the year. The Emergency Room was also incredibly quiet as I was leaving, with the lone security guard snoozing quietly. A Friday night with a huge full moon and it's the quietest I've ever seen Georgetown. Perhaps all the lunacy will happen later.

When I came home I immediately remembered the important data I meant to gather on the current set of issues we're managing: how much does Max weigh? Is he tolerating his feedings despite the addition of an iron and vitamin supplement that is well-known for causing stomach upset? What is his latest head circumference measurement? I don't know if I was suffering from NICU brain or manager fatigue, but after spending two hours holding Max in a relatively quiet and peaceful NICU, I completely forgot to follow up on these important questions. I guess I was being a parent more than a manager.

Carolyn and I continue to try to take it one day at a time. Just because we've had a few good days in a row doesn't mean that future dips aren't coming. But I allowed myself a tiny glimmer of hope today. The phrenology service appear to be losing interest in Max because his head circumference has been stable despite going two weeks without a successful tap. The prospect of having to tap his ventricles directly--an exciting procedure for a neurosurgeon I'm sure--is waning.

Seriously: Max tiptoed to the absolute edge of acceptable hydrocephalus. And yet, remarkably, his body appeared, after we'd given up all hope, to have come to some kind of equilibrium with its CSF production and absorption. He'll most likely always have enlarged ventricles but, if this fragile truce holds, he may avoid requiring an indwelling shunt. This would be a miracle on par with the Cubs winning the World Series. That Carolyn and I--long-suffering Chicagoans--would allow ourselves to hope that Max could avoid a shunt is in itself a kind of miracle.

Since I wasn't a very good manager today, I decided to be a good father instead and asked a wandering volunteer to take a picture of Max and me. (By family tradition, fathers are in charge of the camera.) Enjoy.

At the NICU

What is the NICU like?

Carolyn and I started this blog in late November, a month after the twins were born and we first walked into the NICU. By that time we were battle-scarred veterans of the NICU. I sat down recently and tried to remember what my very first impressions were, back before I knew how the whole place operated.

The NICU is the intensive-care unit for babies, which is why you're so surprised when you walk in and find no babies. Instead you see big machines, flashing lights, and alarms. You see a lot of nurses and doctors. No-one wears a lab coat, so it's hard to tell the nurses from the doctors. You examine the machines: they form clusters around single lucite boxes. Many of the boxes are covered in heavy cloth, veiling the mysteries within. Some have their covers thrown back. The boxes remind you of the apparatuses you've seen in the movies for dealing with plutonium or deadly viruses. They're pressure sealed, with openings only for gloved hands. Above the box you see a computer screen giving five or six real-time statistics; sometimes the screen is flashing and emitting an alarm. Next to the box is a pole stacked with drug pumps; each pump leads into a tube, and the tubes all snake into the box through cunning gaskets. You approach a box and feel the heat and humidity leaking out: the insides of the boxes are simulating the uterine environment but of course you know they can't. You peer inside a box. Maybe there's an ultraviolet light on over the box, bathing everything with a strong blue glow. You see other machines inside the box. A respirator. Maybe more monitors. You see the IV lines running inside. You see wires running to the monitors. You see an oxygen hose. They all gravitate towards a scrap of flesh pierced in several places by lines of various kinds. It's a baby, this scrap of flesh. You notice a diaper, the smallest you've ever seen. It looks too big and also out of place inside the lucite box. You stare at the tiny baby. If the UV light is on, the baby is wearing pads taped over its eyes. If it is on a powerful respirator, it is wearing earmuffs to protect it from the noise. You get a sense of the power of medicine bending towards this baby, energy is flowing in through the IVs, the oxygen hose, even the monitor leads; the doctors and nurses are studying the machines and making minute adjustments to drugs, respirator, oxygen mix. They leave nothing to chance, they measure and react to every chemical or physical process inside the baby that is available to them. The doctors don't look at the baby; there's not a lot to see. Its secrets are being displayed in real time on the monitors. You imagine this is what a nuclear power plant's control room must feel like. You wash your hands one last time and squirt on some alcohol hand cleanser for good measure. A nurse pushes on one of the box's openings; it hisses and then you feel the heat and humidity wash out as the little door opens. There's a smell like a car that's been sitting in a sunny parking lot. The respirator is louder now, and you understand why the baby is wearing earmuffs. They tell you that preemies don't like to be stroked, they prefer steady pressure. You reach in and look for something not pierced by a line, obscured by a ventilator or covered in monitors held on by sticky tape. It takes you a second to realize that you're looking at a hand, sticking out from the end of an arm taped to a board and studded with IV lines. This is the baby's hand. You tentatively grasp it. The fingers all curl around just one of your fingers. You realize your mistake. You are holding the engine; the machines around you draw their power from it. The doctors tell you that all preemies develop their lungs, get their intestines working, get their brains organized (even if these systems don't wind up working all that well in the long run). The doctors aren't sure how they do this. But the hand you hold is boiling with energy. You sense how far away this baby is from the world, and how fast it is rushing back. It is somewhere in a hostile environment, but it isn't lost; it knows where it's going and it's moving so fast that all the machines and doctors can barely keep up. You hope that it will make it home before it succumbs to the deadly hazards it is moving through. You know it will never give up, even until the end. So how can you?

Thursday, December 11, 2008

P.S. (Thursday 12/11)

After taking Max's temp and changing his (very full!) diaper at 3 p.m. this afternoon, I held him for 2 hours straight. He was zonked out, snoozing the entire time: his heartrate was steady, his respiratory rate was moderate, and his oxygen saturations were high the whole time. Plus he just seemed very relaxed. It was awesome.

Evening update (Thursday 12/11)

Max is doing well in his open crib. The day was full of events, but we haven't learnt anything really new about his hydrocephalus or GI condition since this morning's update. Rather than go through Max's activity planner for the afternoon, I thought we might look at some pictures. In celebration of Max's newly liberated status, Carolyn took the camera into the NICU today and shot some photos.

Let's start with a long shot of Max in his swanky new digs:
Max in the open

Note the lack of any IV lines or respiratory assistance. Max still has a feeding tube and a complete set of monitors, but he's becoming more independent. And now let's look at a closeup shot:

Max in the open

The NICU team like to keep his hands near his face for developmental reasons, but it's also very cute. Carolyn captured some shots of physical therapist A. working with Max. In this shot, A. is moving Max's knee up to his stomach:

Max in the open

Note that you can see the red light from Max's pulse oximeter on his foot. Finally, a shot of A. holding Max up:

Max getting physical therapy (edited)
Carolyn reports that Max was "playing possum" during his physical therapy. He would crack an eyelid from time to time but otherwise was trying to pretend to be asleep. If you look closely, you can see that Max is grabbing A.'s finger. That picture, however, reminds me a lot of a picture I took of Max's older brother exactly two years ago today:
Advanced burping technique

Midday update (Thursday 12/11)

Carolyn reports that Max's head ultrasound revealed stable ventricles relative to last week. The NICU team were pleased and thought this development was good. Of course, the ventricles could have shrunk rather than remained as dilated as they were, but for right now we'll settle for an end to the bad news. And a further straw in the wind of potential good news: Carolyn reports that when Max is sitting up (and not crying), his fontanel is slightly depressed. This is normal, and Max's hydrocephalus had been keeping it somewhat bulging, so, again, a small piece of good news. Of course, Max's head circumference remains broadly stable.

Max was visited by speech therapist S. today, whose job is to get Max's mouth working well enough that he can feed himself rather than rely on a feeding tube. She tried a couple of different nipple styles and found one that seemed to work, although Max did not enjoy sucking and swallowing his milk and had a mild brady with associated desat and a little spitting up following the experiment. Much like his older brother (not to mention his father), Carolyn and I believe that Max simply doesn't like new things, and will warm up to eating in time.

Physical therapist A. dropped by. She thinks that Max has made great progress over the past few weeks. Carolyn asked whether she saw any signs of motor control problems. A. cautioned that it's quite early yet, but said that Max isn't showing any warning signs. (Some babies, sad to say, do have problems visible at this age.) However, no-one will Max the all-clear until he's two years old. Two months down, 22 to go!

In other news, they're stopping his caffeine. I wonder if he'll enjoy that as much as I did when I quit drinking coffee?

Wednesday, December 10, 2008

Evening update (Wednesday 12/10)

Carolyn reports that Max was enjoying life in an open crib when she left. He was wide awake and looking around at his new, broader vistas. We hope that he doesn't have to go back into the duller, but more controlled, world of the isolette. Reports are that Max is tolerating life al fresco quite well, so we've got our fingers crossed.

Signs are that Max didn't enjoy the accelerated feeding schedule he was put on. The original plan was to move Max to get 48 ccs over 30 minutes. The first time they tried this, Max had a fairly significant brady with associated desat that was apparently related to reflux. He only spit up a little bit, but Carolyn could see him moving his mouth and saw the peristaltic movements in his throat. The docs have since slowed down his feeding schedule to 45 minutes and he's tolerating it well, with residuals just on the order of 0.5 cc. Max continues to have very brief and mild desats and some episodes of tachypnia. However, Carolyn and I both think that Max seems much more comfortable now than he did even a few days ago, and his statistics also seem better.

Max's head circumference appears to have increased, with the latest reading, 35.0 cm, representing a +0.5 cm increase. Nurse N. hastened to remind us that small increases like this are normal and not viewed with alarm by the phrenology service. We can almost bring ourselves to believe it. Our spies in the NICU report seeing that Max was getting a head ultrasound; this will give us a reading on the change in Max's ventricles relative to his last HUS, taken a week ago Monday 12/1. Obviously we're hoping for little to no further dilation in the ventricles.

We had been dressing Max in a special line of infant clothing designed for preemies. The onesies come with velcro openings that make it easy to attach monitors and run IV/feeding lines into the little astronauts. (I find simply knowing that such fashions exist, much less owning several pairs, to be kind of depressing.) Carolyn reports that Max is starting to outgrow his preemie wear, which is in itself good news.

I'll conclude tonight with a picture of a stuffed elephant knitted by a colleague's spouse. The thought of knitting something like this makes my head hurt, because I couldn't pass differential geometry in college. We've christened the elephant "Mrs. P" to go with Felix's favorite stuffed bear, "Mr. P". (For some reason, Mr. P only wants to talk about the antics of his friends, Freddie and Fannie. Gosh those three are such rapscallions!)

The elephant toy named "Mrs. P."

Midday update (Wednesday 12/10)

A friend remarked that "you know you're a parent when you're keeping a poop journal." We swore off further discussions of Max's intestinal function just last night, but it's a big part of today's developments so, for the final time, a poop journal entry.

Carolyn reports that at morning rounds, the NICU team decided that if Max was able to maintain his temperature, he could be moved out of his isolette and into an open crib. Max did indeed hit his temperature targets. Then, as Carolyn was changing his diaper, he had one of those gastric explosions so familiar to parents of infants. The entire inside of his isolette was covered in healthy, normal-appearing feces. Max's nurse felt that, because cleaning his isolette was going to be an all-day job, he might as well move into new digs sooner rather than later. And so it is that Max is, for the second time, in an open crib. Max had been in open crib when he was hit with the great NEC scare, almost exactly a month ago. See below for a photograph taken literally hours before Max was demoted back to an isolette on Nov. 13. With Max out in the open again, he ought to be easier to photograph.

Max's oedema appears to have improved further, although his lower extremities continue to look swollen. He gained 60 grams overnight, so the NICU team are testing his blood for certain proteins, and also checking to see that he's not simply retaining fluid.

Max's feeding schedule has been accelerated once again. He is now set to get 48 ccs of milk (and fortification) over 30 minutes.

Here's a picture from a month ago, when Max was last in an open crib:


Bonus head circumference post

I'm practicing for when Max comes home by not sleeping. Actually, I was pretty anxious to see what had happened to Max's head circ. I called the NICU a few minutes ago. Max is doing really well. Nurse K. measured his head circumference: it fell -0.5cm and is back to 34.5.

Caution: to the NICU team, this is just sideways; it's within the margin of measurement error so they characterize it as "the same as yesterday". Yesterday, you'll recall, we were all depressed because Max's head circ had increased +0.5cm from 34.5cm to 35.0cm.

Nonetheless, I'll sleep better tonight for it. (But Carolyn will sleep worse for it because I'm going to wake her up and tell her.)

Tuesday, December 9, 2008

Evening update (Tuesday 12/9)

Note: No new head circumference tonight. The midnight measurement will be posted at tomorrow's update.

Max's intestines are working well enough that, unless otherwise noted, you should assume that he's producing the quantity and quality of poop expected of an infant. Max's diapers (and occasionally the entire inside of his isolette) are now routinely filled with the classic "runny and sunny" output of a baby fed exclusively on breastmilk. We'll only note any future darkening or constipation related to mucus, fortification of the milk and so on if we think that there's an incipient GI freakout. Let me spend one last moment on the infant poop. There's something about the innocent yellow and seedy output of a newborn that evokes for me the very early days of parenting Felix. Proust thought that smell was the sense most powerfully associated with memory. And infant poop is my madeleine.

After the mid-morning bonus update, Max was alert and aware. Carolyn said that when she left to go pump Max turned to the sound of her voice. Carolyn likes to hold him lengthwise in her lap and do arm and leg exercises with him. In the late morning and early afternoon, Max returned to snoozing deeply.

When I came to visit around 6:00 PM (I missed the diaper change by minutes--again!), Max was again alert and aware. It may have had something to do with the caffeine being added to his evening feed. The nurses promise that they'll shift the caffeine schedule to his 9:00 AM feed before they send Max home with us. Presumably the alternative is that they send us home with enough caffeine for Max and his parents.

The NICU team are upping the volume and speed of Max's feeds. He'll soon be getting 45 ccs over the course of 30 minutes. For comparison, pure gravity alone would drain that much into a healthy infant in about 15 or 20 minutes. This is important because, should he successfully start breast-feeding or bottle-feeding (as opposed to having milk pumped into his stomach), he'll need to get a full three hours of nutrition is 30 minutes or so. This leaves 30 minutes for burping, cleaning up, etc., 30 minutes for soothing, and 90 minutes for Mom and Dad to sleep before the cycle begins anew.

At the late night call, Nurse K reported that Max was slightly tachypnic, i.e. that he was breathing faster than normal. This is a sign of respiratory distress. Like all of Max's respiratory problems, I blame gastric problems. While I promised to quit talking about his feces, the boy (like his older brother at this age), is gassy as heck. Nurse K reported putting him on his stomach to ease his gas. Oh yes, good point: Add this to the list of NICU oddities: none of this "back to sleep" nonsense. The little astronauts barely have an opportunity to skip a couple of breaths before they're being assualted by a nurse armed with a damp cloth looking to stimulate them. What this will do to Max's longer-term development I choose not to consider.

Speaking of memories, this picture was taken when Felix was about six weeks old (about Max's age now). It will be weeks more before I get to rock Max, but he too will have his chance to stare blankly at his father's collection of Civil War memoirs.