Saturday, August 29, 2009


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.

Friday, August 28, 2009

PTSD and the NICU

The New York Times recently published an article revealing that, when new-born infants have extended hospital stays, their parents can come to suffer a form of post-traumatic stress disorder. It's true that the NICU is a crazy place. Listen to the background sounds in this video:

Let the Wild Rumpus Begin!

I recently read a short story that put me in mind of the parallels between the lives of Max, our son, and Max, the protagonist of Where the Wild Things Are. When he was in the hospital, we hung pages from the book in Max's crib.

Max now routinely drinks four 60 ccs bottles per day, and hasn't vomited in days. Nor does he appear to associate eating with pain; he appears to have escaped post-traumatic feeding disorder (so far).

Here's a picture of Max showing off his new eating skills:

Eating dinner

And here's a video of Max enjoying some family time in the kitchen:

Max and the Red Balloon from Codered Summer on Vimeo.

Wednesday, August 26, 2009

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.

Tuesday, August 25, 2009

What happened last night

Max has gone almost four weeks on the same nose-tube, either because he's lost interest in pulling it out, or because Carolyn has gotten really good at foiling his attempts with artful use of tape. We had tentatively scheduled Max's replacement nose-tube insertion for Thursday or Friday. Putting a tube up Max's nose and guiding it into his stomach is getting harder and harder, both because Max is getting stronger and because he's becoming less of a hospital-cum-orphanage baby. He's had a visit from the baby union and he knows his rights.

Last night, however, the tube gave out on us. The connector to the pump finally split apart. Carolyn pulled out the tube but didn't try replacing it. (4:00 AM is no time to be messing around with these things.) When Max pulls his tube out, we usually him a tube-free day and then replace it in the evening before his nightly feed. Today he really enjoyed his time off from the tube, getting down a personal best 220 mls PO. But then in the evening D. and Carolyn had to reinsert the tube. It was a particularly difficult procedure this time, with the tube curling out Max's mouth (instead of continuing down to his stomach) several times.

When I put Max to bed tonight I tried to tell him that if he'd just quit with the throwing up, he could go tube free all the time. I don't think he was listening though because he has fixated on babbling, which is his new bedtime hobby.

Here's a picture I took this morning of Max sporting the tube-free look:

Tube-free morning

Monday, August 24, 2009

No longer a danger to others

Carolyn took Max to the peds today to get his chickenpox checked out. Dr. J checked out the various lesions, sores, zits, bumps, and other pox and pox-like eruptions dotted on Max's skin and found that the pox-filled vesicles had all burst and crusted over. She gave Carolyn a note stating that Max is no longer contagious. However, Max does still have a few blemishes that will take some time to heal:

Pox-free (sort of)

Nonetheless, Dr. J affirmed that Max was "out of the woods" in terms of complications. Max celebrated the news by chewing on a baby num-num (a rice cake designed to melt in the mouth):

Eating a num-num

Saturday, August 22, 2009

Chicken pox and possibly unrelated personality developments

Today marked the fifth morning we saw Max with chicken pox. He continues to be very happy during the day, albeit a little restless and uncomfortable at night. Max got his last antiviral doses today. I don't know if the fancy new medicines are responsible, but, knock on wood, this hasn't been that severe a case of the chicken pox. So far.

Max is also shedding some of the personality traits I associated with his early stint as a sort of orphanage baby. Babies at the mercy of caregivers with lots of other patients don't cry when left alone. (This is alienates the caregiver.) Instead, they wait until an adult swims into view again and give them their best happy smile. Max is now starting to take us for granted (as well he should) and, if we walk away from him, will complain loudly. Good for him.

Another new development I noticed while putting him to bed tonight is his habit of babbling all sorts of fantastic syllables as he's drifting off to sleep. When he's awake he sticks to "dadada", usually in response to an "ahdadada" from one of us. Interesting that he's more adventurous when he thinks no-one is listening.

Here's a closeup of Max's face, showing off his pox.

Pox, Day 5

Chicken Pox, Day 5

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

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.

Friday, August 21, 2009

More pox

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.

Thursday, August 20, 2009

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.

Tuesday, August 18, 2009

Attention, Medical Students!

We're told that medical students are especially eager to see chicken pox in the flesh because it's such a rare disease these days. As a service to medical students everywhere, here's a picture of Max sporting a couple of visible spots (can you find them? click on the picture to see how you did!). He's in great spirits and appears not to know that he's sick. In fact, because we've canceled his therapist appointments, he may find this a particularly happy time. (We are not letting him read comic books, eat ice cream and watch cartoons all day, however.)

Not acne

Can you find the spots?

Monday, August 17, 2009

Max in Pox, Sir

A visit to the pediatrician this afternoon confirmed that Max now has chicken pox. We knew Max was exposed about 2 weeks ago, and that the incubation period was 10-21 days. Still, we were hoping the pox might pass him by. But yesterday afternoon, we saw some red spots and blisters, and alas, they are multiplying. Chicken pox is still the same kind of virus we had as kids, but the medical view of it is totally different. For example, we were able to start an antiviral medicine, Acyclovir, very soon after the spots appeared. Max will take a 5-day cycle (4X/day); it has been shown to decrease the severity of the chicken pox. Should this 21st century remedy fail, we are at the ready with Calamine lotion and oatmeal baths! Max's pediatricians were so excited to see an actual case of chicken pox that they called the rest of practice in to see what real chicken pox look like (as opposed to the medical textbook images).

In sunnier news, Max has been super-happy and alert over the past few days. He's been flashing his bottom teeth in big, goofy grins, enjoying his Bumbo seat, and generally being the life of the party. Baby whisperer D. made some real progress in PO feeds during the last week, getting Max to take some watered-down green beans, peas, and lentils through his bottle (which he actually seemed to enjoy).

Max in pox, sir!

Wednesday, August 12, 2009

Endurance tests

One measure of Max's increasing head control is the time he can endure in his exercise saucer. It provides him absolutely no head support, but it has plenty of fun toys as an incentive. When we first put Max in the saucer, he was only able to play for brief periods, and would frequently pause to rest his head on the edge of the saucer.

A couple of weeks ago I plopped Max in the saucer and turned on my video camera. The result was about 30 minutes of footage. In the end, it was my endurance that gave out and I took Max outside for a walk before he pooped out on the saucer. I edited out the repetitive parts but still wound up with a 10 minute home movie which, I know, is really long. (Link here; or see below.)

The therapists have asked us to decrease Max's time in the exercise saucer because it does not push him to increase tone in his trunk (i.e. the core body). So the marathon session captured on this video is likely Max's last for a while.

My advice is to watch the first minute and then skip ahead to minute 9:30 where, for just a few seconds, Max switches on his full charm.

Max in the exercise saucer from Codered Summer on Vimeo.

Monday, August 10, 2009

Max and the monkey

The monkey's paw
Originally uploaded by andreas.lehnert
Here's a pic of Max in his favorite chair, nibbling on Curious George's paw. Max also enjoys wrestling with George and playing peek-a-boo with him.

A visit to the neurosurgeon

Max's checkup with the neurosurgeon today went well. His last visit was in early June, and if Max's head growth stayed on a "regular" growth curve, his head circumference should have been "49 and some change" today, in the words of the doc back in June. And today, Max's head measured 49.5 cm. And just as importantly, Max was bright and charming during the appointment. The doc felt Max's fontanelle (soft, slightly sunken), asked about Max's developmental progress, checked his eye movements following motion, etc. (No CT scan today.) The doc said Max looked great, that we should continue to monitor him, and return for another assessment in 3 months, when we will get another CT scan. If we see any signs of increased intracranial pressure (e.g. listlessness, forceful vomiting, full/hard fontanelle, downward gaze, lack of developmental progress), then we return sooner.

Max put up with the day gamely, even though every time he went to sleep, it was time to do something (get in the car, see the doctor, arrive home) and so he didn't get much rest today. So tonight, for the first night in quite awhile, he seems to be sleeping somewhat peacefully fo far. We think he is totally exhausted. Big performance today.

Friday, August 7, 2009

Time flies

Where has the last month gone? We aren't quite sure. Keeping everything running at home and at work has been all-consuming (as if it wasn't before) and blog posts fell by the wayside. We will try to do better in the future, though it might mean shorter posts and also relatively more posts from me.

Where to start to catch up? In many ways, Max is a different kid than he was as of the last post. He has gained about a pound (he is now about 17 lbs), is stronger overall, and is actually taking a bottle without making a face like we are trying to poison him. He has increased endurance for time on his tummy, enjoys his exersaucer, and increasingly has better head control and fine motor control. In other ways, not much has changed. His reflux is still troublesome, still has his NG tube for feeding, still is taking about the same volume by mouth (about 1/8 to 1/4 of his total volume needs).

On the doc front: We visit the neurosurgeon on Monday for a check-in. the GI doc says that a G-tube at this point wouldn't be appropriate, given that Max is still having reflux problems. We need to plan for at least another 3 months with the NG tube. This is traumatic for both Max and us when we need to re-insert it, but at least in the short run it is better (presumably) than surgeries.

Max's personality gets stronger and funnier by the day. He thinks that squirting bath toys are hilarious, loves being tickled, and loves gnawing on stuffed animals. In fact, Max likes gnawing on pretty much everything Oh, and he has two new bottom teeth.