Tasting

Before we feed Max from a bottle, we let him taste the food he's about to get from a spoon. I forget the precise reasons for this procedure, but no doubt they have something to do with developing a healthy relationship with food. Here is a video of one of the less successful meetings of Max and spoon. Note the bumbo seat.

Tasting from a Spoon from Codered Summer on Vimeo.

The unexpected connection between hips and lips

Max polished off four bottles of the witches' brew that Carolyn and our friend D. ("the baby whisperer") have been concocting lately. I hear the blender whirring and I see the superfund-worthy residue in the bottles after he's done, but I try to ignore what's going in. Peas, that's okay, but maybe they're mixed with ... milk? That seems less okay. But never mind that; the key is that Max can now routinely tackle a 60 cc bottle. Today he got down four of them, for a total PO intake of 240 ccs.

After a month-long hiatus thanks to the confluence of vacations and being quarantined for the pox, Max was back on the therapeutic grind today, with visits from physical therapist L. and speech therapist D. Both commented on Max's development since they last saw him. L. noted that Max had made one of his goals--sitting with assistance for five minutes.

L. gave Carolyn lots of tips for how to manage Max's hypertonic legs. Rather than supporting Max by holding him at mid-torso, she recommended holding him at the hips as much as possible, and rotating them as a strategy for reminding Max's nervous system to relax his leg muscles. As L. said to Carolyn: "You know the old saying--you'll never get the lips without the hips". To be clear, this is what passes as humor among physical therapists and not at all dirty like you might have been thinking. Basically, no kid masters full oral competence without also gaining some control over tone in the legs (I think that's what that means). In other words, Max's two major challenges--controlling his legs and mastering eating--are at opposite ends of his body but are deeply connected.

Amount by mouth

Carolyn and are slowly coming to believe that Max has a throwing-up-his-food problem, not a classic feeding disorder, although he exhibits symptoms of both and they are, of course, closely related. Who wants to eat when it just means throwing most of it, painfully? Well, actually, because it is literally the difference between life and death, most of us would find a way to tolerate it. But infants are a bundle of instincts at war with learned behaviors. And Max won't suffer malnutrition if he stops eating because Carolyn and I would grimly man the pump and see that he gets enough food.

The tube itself may inhibit Max's desire to eat and learning about food. The jolly GI, BK, told us about an experiment in which monkeys were tube-fed exclusively from birth. After six months the tube feedings were stopped completely and the monkeys were offered similar food by mouth. How long, BK asked us, did we think it took for the monkeys to establish a normal eating routine? Clearly he was expecting us to guess a few days, and was somewhat taken aback when I guessed that the monkeys never learned to eat normally and, in fact, starved to death. Hey, doc, I'm living in a worst-case scenario kind of world these days. (The real answer was two weeks.)

About a month ago, we started giving Max a taste of solid food at his feedings. And then about two weeks ago, we started grinding up peas, sweet potatoes and the like, mixing them with water and giving them to him by bottle at one or two feedings per day. As I was feeding him some pureed peas today, I noticed that he would more or less hold the bottle while eating, or at least try to return the bottle to his mouth if it slipped out. Where just a month ago he would spurn our attempts to give him a taste of solids, and continued to at best be uninterested in (and, at worst, hostile to) the bottle, he seems to be learning to use it. Slowly, gradually, in barely detectable incremental steps, he's moving to become just a very finicky recovering anorexic, a huge improvement from his earlier militantly anti-food stance.

Max holds his bottle

Every night we pump 660 mls of fortified breast milk into him. He's never broken 200 mls by mouth in a day, so he's still getting the overwhelming majority of his calories through his pump.

But if you examine the attached graph, you can discern a very faint upward trend (trust me, I've run the regressions). The vertical lines are Fridays. During the week, his bottle feeding is managed by D., the baby whisperer. On the weekends, it's just him and us. Notice the pattern of huge drops on Saturday and Sunday. Carolyn and I are trying. And today he took 165 mls from Carolyn and me; we believe this to be a personal best.

More pox

Sitting up! (With the pox)
Originally uploaded by andreas.lehnert

I took this picture this morning; I believe this is the fourth day of Max's outbreak of the chicken pox. Over the past few days he's made a couple of startling advances. Yesterday he took some quasi-solid food on his own (baby num-nums); this morning he was able to remain sitting up unaided. I was upstairs pouring myself a cup of coffee when Carolyn called me down. I walked into find Max sitting up and playing the bongo drums.

Maybe it's the pox that's accelerating his development, maybe it's the oatmeal baths and calamine lotion.

All joking aside, the chicken pox is no fun (ignore the smile! you should hear him at night!). But we're happy to see Max thriving through it.

Pox Day 2

More pox
Originally uploaded by andreas.lehnert

Carolyn reports that Max seemed pretty itchy today, but that he wasn't otherwise in obvious distress. He had more blemishes Wednesday morning than he went to bed with Tuesday night, but when he went to bed tonight he didn't seem to have accumulated that many more during the day.

Some of Max's therapists work with children with compromised immune systems and so are steering clear. Max used his unexpected vacation from speech therapy to eat a cracker. Well, I'm exaggerating slightly, but he used his new teeth to gnaw on a baby num-num. Reports indicate that it's not clear if any went down his throat, but that he smeared it all over his face. Quite a milestone.

Progress bar

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

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

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



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


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

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

The biggest loser

One the last TV shows that Carolyn and I watched before our forcible removal from popular culture was a reality TV program called The Biggest Loser; obese people competed to lose weight, resist temptation and, this being reality TV, plot to destroy each other. The dramatic moments centered around the weigh-ins, where the week's biggest loser would be revealed. At the time, Carolyn and I speculated about emergency weight loss strategies that a contestant might use to drop the final few ounces before the weigh-in.

We're watching Max's weight with the same intensity that the audience watched those long-ago contestants' weights. In the way that everything in our life is a mirror image of reality as we used to know it, we are desperate to see Max gain weight, and we would be willing to use a trick or two to artificially inflate his weight around his weigh-ins, but the nurses and doctors know about the obvious strategies.

When travelling nurse J. came by on Friday, she found Max to weigh 15 lbs, 1 oz. Dr. J. felt that this was insufficient gain over the week, and asked to see Max after the weekend, i.e. today. Carolyn brought Max in to the pediatrician's office, where they found his weight to be 15 lbs, 5 oz. To me, it's a simple matter of measurement error: different scales, different people doing the weighing, and our floors aren't exactly level. But it seemed to satisfy Dr. J., who asked what we had done over the weekend to increase his weight 1.6 percent in three days.

I'll let you in our secret: we forgot to feed him. At some point last night, probably around 2 or so, his pump ran dry. Carolyn and I slept through our alarms and didn't get up to refill his pump until past 4:00 AM. Just think how much Max would have weighed if we had remembered to feed him.

The night shift

I've been taking the night shift this weekend; Carolyn spends the night in the basement while I remain upstairs to keep the home hospital going through the night. In case of emergency I have Carolyn's cell phone number; because the basement is so quiet and isolated from the rest of the house, the telephone really is the only practical way to communicate. So far I haven't broken down and called for help, but it is a three-day weekend.

The night shift at our house poses some unexpected challenges. While I've always had a vague impression of lots of nighttime activity, I haven't had to really grapple with it until now. There's a great deal of arithmetic. Really hard arithmetic.

Here's an example of the kind of story problem I found myself solving last night. Max's pump delivers food at the rate of 43 ccs/hours. He is supposed to get a total dose of 588 ccs and the feed started at 7:30 PM. I was supposed to wake up at 2:00 PM to give him some meds and top up the bag. It's now 4:10 AM and the bag is empty. The pump says that it's delivered 430 ccs. I have a vague sense that it ran out of food around 3:00 AM and has been pumping in air since then. How much more do I need to program the pump to deliver? What about those meds Max was supposed to get at 2:00 AM? Will I remember to delay his next dose two hours so he doesn't get two too close together? Just how guilty should I feel for inflating my son like a basketball? Why didn't I wake up at 2:00?

In short, there's a great deal of division by 43, which is not a natural unit at all. Not to mention fiddling around with the pump in Max's room, which is usually bright and charming, but which is made tenebrous by the extremely late hour.

When Max was in the Georgetown NICU, the nurses encouraged us to have "skin-to-skin" time with him. According to the NICU team, skin-to-skin promoted brain growth and bonding; it may have had benefits for the child too, I don't remember. I'd strip to the waist and they'd hand me Max, clad only in a diaper. We'd sit in a rocking chair, Max held to my chest (and, um, ample tummy). The nurses would only let me take Max out for 20 minutes at a time. But even after such a brief period I would feel totally drugged. There's an ancient part of our brains that is wired to soothe and protect a baby; that primitive cave parent brain would hijack my higher functions completely after just a few minutes of skin-to-skin time. Good-bye seminars, traffic and weather together on the 8s, job evaluations, dinner invitations; hello roasted bison and growling at the dark. Now that we're at home, the cave parent is relegated to taking control only during the night shift; he's there to make sure his son gets everything he needs no matter how tired the modern parent is. The only problem is, the cave parent can't divide by 43.

A visit to the GI service

Carolyn took Max to Children's for an appointment with the GI service. Because Max's big two challenges are his problems feeding by mouth and his habit of throwing up a lot, we expect the GI service to be a big part of Max's care. Carolyn's experience today was a little disconcerting. She went into the meeting expecting the GI service to identify Max's underlying problem, or at least to lay out a plan for figuring out what the problem is, and then to recommend a course of action to solve the problem. I often fantasize that I'm the CEO of a major company, say MaxCo Inc ("Increasing Your Dry Cleaning Bills Since 2008"), and that the medical and surgical services are my staff. I walk in to the boardroom every morning and demand a rundown on the plan to bring MaxCo to profitability by 2010Q1, like I promised the shareholders. Reality and fantasy didn't diverge much when we were all at the hospital, which had a rigid hierarchy and a clear goal. (And, in truth, given the tab that the real-world Max is running up, he may be generating more revenue than many small businesses these days.)

But we're home now, and I'm cast in the role of a small scale entrepreneur; say, a solar-energy enthusiast or a mortgage broker. No big corporate planning department is going to lay out the three milestones to profitability with appropriate workstreams and interim goals. It's just Carolyn and me trying to piece the puzzle together.

Children's GI service really brought this home. No-one knows, really, why Max is vomiting so much, or why his bottle feeding attempts are trailing off so badly. Moreover, the information Carolyn got from the GI service contradicted information we got from the speech and occupational therapists we've seen. As we expected, the GI service tried to "blame the head", i.e. point to his neurological deficits as the cause of his problems. But beyond that, they didn't have a particular diagnosis, or even really a plan for narrowing down the cause of his problems.

They thought that, perhaps, Max might be getting too much food, as evidenced by the fact that he's gaining weight at the upper end of the normal range. One possibility, they suggested, was to feed him less at night. As an alternative, we could feed him the same amount, but fortify less, so that his food is less rich and hence (I assume) easier to digest. The GI service kept referring to Max's problems as "gagging" as in "perhaps he's gagging on his feeding tube." So they're not even convinced he has reflux. The GI specialists mentioned a type of surgery that we hadn't heard of before: a "peg", which is simple to install and allows access to the stomach through the abdominal wall. Of course, such a device will derange the Angle of His. However, according to the GI specialists, the research on the relationship between stretching the Angle of His from acute to oblique doesn't really support the view that it worsens reflux. Which Max might not have anyway.

In the end, we assembled all of the information and ideas from the GI service and laid them at the feet of Max's pediatrician, the stalwart Dr. J. She called Carolyn back at 9:00 PM tonight and discussed the new information and the options. She agreed that dialing back the fortification was potentially a good step.

Max was absolutely exhausted after his trip up to Children's. He insisted on an early bedtime, and was tucked up and sound asleep by the time I got home from work. I got to go up and give him his 8:00 PM medications, though, and he was extremely cute. Carolyn reports that Max put on his usual display of irresistible charm while at Children's today. However, the hardened professionals of the GI service take a deeply skeptical view of baby charm, perhaps because they are constantly being vomited on by their patients.

Tube free (for a little while)

Tube free (for a little while)
Originally uploaded by andreas.lehnert

Max pulled out his ng tube this morning, giving me an opportunity to take plenty of tube-free pictures. Of course, we immediately worked to reinsert the tube, so Max didn't get to enjoy his freedom for very long. Max had kept this tube in about two weeks, so we switched nostrils.

Max won't be rid of the tube for good until he starts taking a significant amount of food by mouth. He gets about 700 ccs of milk or formula per day. Today, he managed to get down 19 ccs by mouth, although we were quite happy because this is a lot more than he usually takes over a weekend.

Occupational therapy for babies

Occupational therapist C. visited Max today; this is only the second therapeutic visit Max has had since coming home. Carolyn is slowly figuring out the bureaucratic maze surrounding service providers. It's particularly troubling that Max has yet to see a speech therapist, given that his primary problem right now is eating by mouth.

C. specializes in baby massage. Maybe I was skeptical; now, I'm a believer. C. used something like a beneficent version of the Vulcan nerve pinch on Max. A couple of simple strokes and suddenly Max is smiling and gurgling happily.

C. also watched Carolyn give Max a bottle. It was shaping up to be another dud session, but C. applied very slight pressure to Max's temples and cheeks and he eagerly gulped down most of the bottle. He did so well, in fact, that his stomach rebelled and he vomited back about half of the feed. But no matter!

I wonder if perhaps Max's new friends can have great success feeding him at first, before he begins to associate them with food. Max long ago figured out that when Carolyn or I prop him up in the crook of our arm, we're going to try to feed him. But when these new people (the baby whisperer, C. et al) try, Max is caught off guard and he is anyway too polite to throw a tantrum in front of a stranger. Perhaps the secret to feeding Max will not be, as all the books advise, to put him in a calm familiar place but rather to surprise him with an unexpected bottle in novel surroundings.

How to get a tube-fed baby to take a bottle

Actually, we don't know how to get Max, who has been exclusively fed by an ng tube, to take a bottle routinely. Earlier this week I had a giddy feeling that Max was doing so well with his bottle feedings--thanks to the secrets of the baby whisperer--that he might forgo the pump completely during the day. But as the week wore on, D. ("the baby whisperer") found it harder and harder to get Max to take a bottle. Carolyn had a long conversation with D. regarding oral aversion and feeding problems, the upshot of which was D.'s feeling that she had been pushing Max too hard and probably he was getting grumpy whenever the bottle came into view. We all scaled back our expectations and went back to the standard three PO attempts per day. ("PO" is medical jargon for "by mouth"). So the bad news is that I've had to scale back my vision of Max just bursting out of his cocoon to turn into a butterfly in a month. But the good news is that, with more realistic goals, Max is doing extremely well.

In other news, Max and Carolyn went to visit his pediatrician. The big downer is that the office had lost Max's chart. Experiences like this are what lead reasonable people to conclude that simple efficiency improvements ("like we have at my office") could save $2 trillion per year in medical expenses. But, really, who hasn't lost the chart (or equivalent) at their job from time to time? The main consequence was that, when the pediatricians weighed Max (14 pounds 15 ounces) they didn't know how much weight he had gained.

Otherwise, Max's legs seemed tight and muscular. My theory is that he has figured out how to switch is muscles on and off, but hasn't figured out how to achieve states between tense and relaxed. His range of motion doesn't seem impeded.

While at the peds, Max was, in Carolyn's words, "bright and sparkly". He showed off a new trick: grabbing a stuffed animal resting on his chest while lying on his back. Max did a lot of smiling and was very calm and patient while he was being discussed. When discussing how to watch for signs of personality changes induced by increased intracranial pressure stemming from his hydrocephalus, the pediatrician pointed to a smiling Max and said: "He won't be like that".

Secrets of the baby whisperer

Last week I was concerned that Max's run of record-breaking bottle feedings were part of the cycle described by the speech therapists, where babies do well for a few days but then suffer severe reflux pain and eschew the bottle. And we got almost nothing in Max by mouth over the weekend--maybe 20 ccs in total over two days. But the other variable was the absence of our friend D. ("the baby whisperer"). Today D. came back and Max took four bottles, for 35 ccs, 50 ccs, 50 ccs and 25 ccs. I think this marks a new personal best for Max.

Obviously, the reflux cycle isn't at work. Instead, operator error is to blame. Carolyn watched D. give a bottle today and noticed the following secrets to getting a recalcitrant, refluxy, tube-fed baby to take a bottle:

1. Keep it fun! D. sings, tickles and otherwise "gives him input" (e.g. pushing his legs)
2. Wrap him up--some babies enjoy being swaddled, and it increases their sense of organization.
3. Take plenty of breaks. Max took his feeds at the same (very slow) rate delivered by his pump on average. Getting there, however, he would eat fairly quickly, lose interest, play with toys, and then come back to the bottle.
4. Look him in the eye. My crackpot theory is that babies are attuned to faces, and it's comforting to have a big friendly face looming at them.
5. "Let him know who's in charge". (Presumably D. meant that she was in charge, but when she's not here, Max totally has us running at his beck and call.

In other news, Carolyn put Max in his bug socks in honor of the visit by the pest control man. These socks have big fun felt bugs on them and, as with anything connected to his feet, Max found them hilarious and fascinating. He spent a lot of time with his legs sticking out examining them. When Carolyn put a blanket over them he wailed inconsolably until the blanket was removed and he could again see his feet waving around.

Thriving at home (so far)

One of the first rules of the NICU we learnt was to take it one day at a time--an injunction to discount any day's highs or lows. I suspect there's a similar rule for the home hospital, but Max has had a string of good days. Maybe we're allowed a small measure of confidence and hope, even as we keep an eye on his hydrocephalus and other evolving threats.

Over the past few days Max's ng tube has become sort of disgusting. One of his favorite tricks is vomiting through his nose and messing up the tape holding the tube in place. This morning, Carolyn and D. got sick of it and pulled the tape off and the tube out. Max got to spend most of the day without an ng tube. This meant that he relied solely on the bottle for feeding--no backup recourse to the pump if he couldn't take all his nutrition by mouth. And he did quite well, taking 30 to 40 ccs by bottle at the three regularly scheduled feedings plus one bonus feeding. Of course, each of these feedings takes close to an hour of patient work, but this is great. Although we're thrilled, we keep in mind the warning we got from HSC speech therapist L., who told us to watch for a sinusoidal pattern in Max's bottle feeding. Max might eat a lot to satisfy his hunger, have a bout of reflux and then go off bottle feeds for a while. However, Max hasn't yet had a bad day with the bottle. All of the credit goes to D., who is amazingly patient and has a deep intuitive connection with babies.

I asked Carolyn to take plenty of pictures of Max without his ng tube. She complied. Here's one of my favorites:


Visiting nurse J. came by in the afternoon to supervise the introduction of a fresh tube, along with a cleaner taping job. She brought a new tube style that has a separate port for medicines, so we no longer have to disconnect the pump to give Max his medicines. In addition, the tube stoppers are more robust and easier to manipulate with one hand.

Nurse J. weighed Max, and found that he had gained six ounces since her last visit on Friday. This is a big increase, but Max was probably a little light when she weighed him last, so we think that he's gaining weight at a healthy pace.

As a visiting nurse, I think that part of J.'s job is to gently remind parents of their duties, as well as to help them run the home hospital. J. pointed out that it really was well past time for Max to get a real tub bath. We didn't jump for joy, but we did it (well, D. did). Among other things, a tub bath means that Max's monitor leads have to be taken off and then replaced. Max seemed to enjoy his full immersion, although not quite as much as he enjoys his sponge baths. Here's a picture. Note the tight grip on D.'s finger:

The countdown begins

Carolyn had the first really concrete and serious conversation with the HSC team about Max's release data. Two forces are converging: Max's improving robustness and overall condition, and the HSC team's belief that Carolyn and I can understand and carry out the complicated feeding regimen that Max is on. Rather than wait for Max to move to a simpler regimen--one carrying fewer risks should we make mistakes--the HSC team are willing to take a chance on our diligence and attention to detail.

Although like any time line this may skip, Max may be home 10 days from now. Much depends on how he tolerates the slight tweaks to the feeding plan that they're proposing, and there are a few other variables in plan that might push Max's release date back a few days. But, barring major complications, he will be home by early May.

Grabbing!

After a very deep sleep on me following his noon bottle feed, I had a play session with Max involving bicycling his legs, reaching for toys with him on his side while flexing his abs, etc. As part of our play sessions, I've noticed that Max loves to be tickled and kissed on different parts of his body. He gets a huge smile on his face and even laughs. When I was bending over him today, I felt a tug on my hair: Max had grabbed a handful and was pulling! Thinking this might have been an accident, I gave him another opportunity and he did it again. Very exciting. I've noticed over the past few days that he is doing a better job grasping, opening up his hand, then clasping whatever is in it and holding on for a good while. He also wants to bring things to his mouth.

Max's feeds are now compressed over 20 hours (at a rate of 34 ml/hr), so he is getting four hours of a break at some point each 24-hour period. We are still trying to figure out exactly when that will be. We did get his vitamins changed to evening, when he is more likely to be asleep and less likely to spit them back up. Throughout the coming days, the HSC team plans to compress Max's feeding further, if he will tolerate it. While Max does have some emesis throughout the day, the doctors think that in general he is tolerating the NG tube and that he is gaining weight appropriately (he now weight about 13.5 lbs). The GI docs from Children's will assess Max on Tuesday and weigh in with any additional advice on the plan.

Max continues to be a social being: he just wants to see faces. The nurse tonight reported that after I left, Max sat in his stroller by the nurses' station for about an hour, until he had his bath and fell asleep for the evening.

Going on our first walk

Carolyn went into the NICU this morning having heard that Max had some dark vomit on his clothing very early this morning. It was the vitamins again! Perhaps Carolyn is on to something with her suspicions.

But the big news today was that nurse J. suggested Carolyn unplug Max from his monitors and take him for a walk. Max clearly enjoyed it; he stared at the pictures on the wall, he turned to voices when people to spoke to him, and made the soft cooing noises we sometimes hear from him when he's particularly content. Carolyn even took Max out into the waiting area between the two nurseries (the step-down nursery remains closed for lack of business). When Carolyn walked Max around, the standard rules of the NICU were all suspended, including the first rule of the NICU, which is not to talk to the other parents. Carolyn had a pleasant chat with the only other parents that have been there as long as we have. Because of the complete lack of privacy in the NICU we can't avoid following their child's progress; nor have they been able to avoid following Max's. It was nice, for a few minutes at least, to admire each others' babies, like real parents.

Carolyn is also quietly polling the nurses for their opinion of whether Max should have surgery to attempt to correct his reflux. Nurse J. reminded Carolyn that Max has had severe reflux almost since the start, certainly since mid-December, and he's had several opportunities to overcome it. She also said that in her experience she seen only very few complications from the surgery.

As for Max's reflux today, I would grade his progress as only fair. He spit up a couple of times, but not very much, and once because of the accursed vitamins. He had a very smooth feeding in the early afternoon, but his 5:00 PM feed was tough, with Max showing obvious signs of discomfort.

Finally, the nurses and Carolyn managed to get Max to take his Maalox by mouth. This is a milestone in my opinion, because taking food by mouth is something Max failed spectacularly at his first attempt back in December. At the time, the NICU team pointed out that the mechanics of swallowing depend critically on having a functioning and organized brain, and they blamed Max's problems on his hydrocephalus. Getting Max to swallow his Maalox wasn't easy: they had to put the Maalox in his mouth and then get him interested in his pacifier. A few sucks, a swallow, and it was down.

ND tubes mean continuous feeding

Carolyn just phoned the NICU and got the nightly update on Max. She also reminded me that, with his new ND tube, Max is not fed every three hours as he had been. Instead, he gets a continuous trickle (20 ccs/hour) because the the duodenum cannot handle large quantities at a time. Max's food now hangs on what looks like an IV bag.

Max's night nurse, J., has had him for three nights now. She felt that his breathing was perhaps a little easier (he was "retracting" -- a sign of respiratory distress -- less often). She also thought that his head felt better, i.e. the fontanel was softer. As always we update his head circumference every night. Over the past few nights, Max's cranial growth rate has run just a little faster than the 0.5 cm/week rate that it had averaged since late November. No one seems to be concerned about this.

Finally, Carolyn informs me that Max has outgrown a lot of his preemie outfits and is now being dressed in normal newborn clothes. Can it be long before the "statistically significant" onesie reappears?