Max at GUH

Good-bye to the bouncy seat

2010-07-03T17:23:00.002-04:00

The green bouncy seat is going to another baby's house. I vividly remember the bouncy seat lurking near Max's crib in the hospital:

And then once Max came home, he could see the world while sitting in his bouncy seat because it would hold his head up. He also liked to sleep in it because it would keep his reflux in check:

I hadn't seen the bouncy seat in months, but Max gave it one last test drive:

One year home

2010-04-22T20:51:00.004-04:00

We brought Max home on April 23, 2009. It was his 180th day of life, or exactly six months since he'd been born. I remember inserting a fresh ng tube while we were still in the hospital, nervous at the thought that the next time we did this it would be without a helpful nurse nearby to give encouragement and advice. I also remember snipping Max's ID bracelet off. And then we were home.

Can you see the terror in our eyes?

When Max first came home there were two cribs and an air mattress in his room. At night we would put him in the portable crib; it sat on the ground and had mesh sides so we could clearly see Max, inches away from us while we took turns dozing on the air mattress. In those early days at home Max was still a true hospital baby, not really used to a diurnal cycle, so he was quite active in the deepest, darkest hours of the night. I remember falling asleep at one point very late in the night and waking up a few hours later to find that Max had pulled his nose tube out while the pump was still running. He missed a lot of meals that way. Max recognized that he had been demoted to a deeply inferior hospital environment, but he put up with it patiently.

The doctors here are incompetent but I love them anyway

We also had our meetings with Arlington County's excellent early intervention team, and got to know the full complement of therapists and visiting nurses with whom we'd be working. In those days, Max could not hold his head up on his own for more than a second, could not flip over and was nowhere close to being able to sit up without assistance. This all fit with the picture of poor control of his muscles, including, of course, his esophageal sphincter. He could barely tolerate 20 ccs of his special pre-digested formula without vomiting it all up. His feeds had to run at a rate just below 1 cc/minute, yet we had to get 400 to 600 ccs into him every day. He was constantly on the pump at night, during naps and, most cruelly, when he was awake and playful.

Story time during a feeding

But even early on Max would do unexpected things which, if we let them, would stir a small measure of hope in us.

That bottle was a sign of great things to come

Max's kid cart had torso and head supports that allowed him to sit somewhat upright without flopping around, and an easy attachment for the feeding pump. The kid cart also allowed Max to routinely go outside and see a world without artificial light. The light and the space seemed to stun him in the early days,

Max participates in outdoor play while getting a feed

In August, about the time Max was getting enough control of his torso to be able to sit up (with support) for more than just a few minutes, his reflux began to improve. In fact, this is an understatement. Carolyn and I have never really discussed this, but Max's reflux seemed to simply fade away from one day to the next.

Head control, torso control, and then...esophagus control?

We had become (and remain) deeply superstitious. To speak hope aloud was to be certain of seeing it blighted. But now perhaps the truth can be told. I don't know how or why, but just as we were about to schedule him for surgery to have a permanent g-tube surgically implanted, Max's reflux just ... stopped.

And then, as if finally released from some inner prison we could barely understand, Max began to make lots of progress. Here he is sitting up unaided.

Am I showing off? Maybe I deserve to.

Six months after he came home, Max celebrated his first birthday. He seemed to take it in stride, but Max continued to shy away from loud noises and crowds. We tried to have a good time anyway.

You too can have a silly hat, if you so desire. No? Perhaps next year.

By Halloween, Max was physically capable of taking part in at least some of the festivities.

Max's Halloween from Codered Summer on Vimeo.

By December, Max seemed to have control of his bottle. Most of his nutrition still came to him by ng tube, but he seemed determined to get enough on his own to end his dependence on the tube.

Did you ever think you'd see this?

On the advice of his therapists, we limited the number of electronic gizmos and toys in his life and introduced him to the oldest toy known to man: the ball. He took to it immediately, raising our hopes of some kind of athletic scholarship down the line.

Is it the shoes?

In mid-February Carolyn and I threw caution to the winds and pulled out Max's ng tube. From then until now he's gotten all the nutrition he's taken in by mouth. Here's a picture of Max with Doris. Without her knowledge of infant care and her deep connection to Max he would never have made the progress he did.

Doris holds Max shortly after we took the tube out

A week or so after the tube came out, Max started sleeping freely in a regular crib, no longer on his stomach all night (sleeping on his back was bad for his reflux), no longer strapped in at a 30-degree incline with a Tucker sling. Now he could experience a more natural night's sleep. A couple of weeks ago, I saw him sleeping on his back for one of the first times in over a year.

That more or less brings us to today. Max enjoys pushing his mail cart around the neighborhood and terrifying the local cat population. He's not a clear speaker (yet) but he does seem to have word-like sounds for the common people or objects in his life: Nana (Doris), Dada, Mama. A neurologist finally delivered Max's official diagnosis. Interestingly, where a year ago I would have been obsessed by the neuro service's findings, today I shrug them off. Perhaps that's the clearest indicator that he's out from under the shadow of the NICU and into the sunlight of the next part of his life.

Eighteen months ago today

Today. Watch out world, here I come

We took out the tube

2010-03-17T21:58:00.002-04:00

Last month Max had a persistent cold and post-nasal drip that was really aggravating his reflux. Carolyn and I thought that Max's ng tube was contributing to the problem--after all, how easy can it be to close your esophageal sphincter with a tube running through it? At the same time, the idea of pulling out Max's nose tube had been growing in our minds: we were tapering down his nightly tube feeds with the idea of smoothly going to zero. But with Max sick, we'd backtracked on the plan and increased his feeds. I can't really describe why we pulled out his tube except to say that, for a second, we allowed ourselves to imagine doing so and then couldn't stop. There's a video below (or click here) if you're curious what it looked like (warning: kind of gross)

Removing the tube from Codered Summer on Vimeo.

We waited a month to see whether or not we'd need to reinsert the tube and start pumping again. Yesterday, the medical supply company came to pick up the pump. (Max still seems to have the cold though. Oh well.)

Goodbye, Infinity Orange. I hope the next kid to use you is as lucky as Max.

Over the past month we've also tapered off Max's regimen of medicines. It was much harder to get him to take his medicines when he could actually taste them. With the tube, we could just squirt doses directly into his stomach. Now, we have to sing "The Piña Colada Song" and dance around to convince Max to accept a single dose of medicine. It would be simply impractical to do this for his regular schedule of 19 daily doses---there aren't enough verses in "The Piña Colada Song", for one thing.

We took the tube out the next day

Something's missing from this picture...

When I pick Max up I still make sure not to hold him so his tube is next to my cheek. It's a fresh thrill every time to realize Max no longer has a "tube side".

One year ago

2010-03-05T21:02:00.002-05:00

It's been one year since Max graduated from Georgetown's NICU and moved to the HSC. That makes March 5, 2009 one of the four candidates for Max's birthday. The others are his actual birthday, his due date and the day he came home. If we count from the later birthdays, Max doesn't seem as developmentally delayed; indeed, he's downright advanced. More on that in a second.

Looking back on Max's transfer to the HSC, what I remember is the wrenching sense of dislocation as we left behind the nurses, doctors and therapists we'd come to know during Max's 4.5 month stay. We can see now that Max's stay at the HSC was a step on the long journey that brought him home. It's a day to look back at the distance he's come, which is what birthdays are all about.

Nurse K. preps Max for his cross-town journey

Carolyn and I took Max to Children's--right around the corner from HSC--this week to see a developmental specialist (with the Pynchon-esque name of Penny Glass) and to get a routine checkup from the phrenology service. Penny examined Max in a dingy room where the brightest objects were the toys she brought with her. I think the room was designed to minimize distractions. Max did okay on his tests; Penny put his development in the 10 to 12 month range, which would put him right on schedule if we count March 5 as his birthday. The exam itself felt like a play session, with Penny dangling toys, letting him chase balls and so on.

First thing you learn about the hospital: you always gotta wait.

We also had an appointment with the neurosurgery service, notorious for its delays. Max didn't get a CT scan this visit, but we do like to have him seen regularly. His head continues to grow and with his fontanel closing, nature's pressure release valve won't always be available. The neurosurgeons examined Max, measured his head and declared themselves satisfied that Max is on his own growth curve way out at the 99.999th percentile, but at least he isn't jumping to the 99.9999th percentile.

Hopefully, hats won't come back into style

During Max's evaluation, Penny remarked that Max's cough sounded as if he had "the croup". I scoffed, insisting that the croup belonged to a bygone era of medicine. However, Max has been sick, so Carolyn took him to the regular peds service. And, of course, he does have the croup. Who knew something so medieval-sounding could still be a problem? And surely I've learned my lesson regarding karmic justice by now? Max is on his second ten-day course of antibiotics for the underlying ear infections and we're applying leeches to control the croup.

We just can't seem to keep tissues in the house

Valentine's day, then and now

2010-02-14T15:00:00.001-05:00

St. Valentine's Day Cards
Originally uploaded by andreas.lehnert

The NICU nurses used to make cards "from" Max to us on holidays. Max's NICU stay overlapped with most major holidays: Halloween, Thanksgiving, Christmas, New Year's, Valentine's Day, President's Day, Easter... Now that I think about it, given that he spent six months in the hospital, perhaps this isn't such a remarkable achievement.

Last year at this time we were enjoying a Valentine's day card from Max (see attached photo). This year, I got Carolyn a box of chocolates. It's an improvement.

The Great Blizzard of the Year 10

2010-02-09T21:33:00.002-05:00

The Washington Post has been running a contest to name each snowstorm as it hits us: Snowpocalypse, Snowmageddon, Snowverkill, Snovetchkin. Back in the old days, we'd just name the great storms after the year they happened in. These storms are just merging into one great mega-storm--treacherous streets, cloudy skies, sudden burst of snow like summer thunderstorms.

Which one is this again? Snowmageddon or Snoverkill?

We had a few days' respite, so the county was able to plow out our road. The appearance of a snowplow in our cul-de-sac was like Paris '44 or Baghdad '03--one of the two.

Do we throw flowers or loot the stores now?

Max has been sick for several days. He's having a few digestive issues, so Carolyn and I are pumping more food into him at night. Where did this come from? Neither one of us is sick, his older brother seems okay. Perhaps it was the Synagis shot?

Not even the camera will make me smile

In the past, Max has been particularly cranky before a developmental leap of some kind. Today, while Carolyn and I enjoyed a few hours of peace at our offices, it appears that Max got very interested in walking. He can't manage it unaided, but here's a video of him walking with assistance.

Max Pushing His Mailcart from Codered Summer on Vimeo.

Max was tired at the end of the day, but seemed to be in a much better mood. (So was I.)

That's a copy of "The Going to Bed Book" cradled in my arm.

Reflecting on reflux

2010-02-07T20:43:00.004-05:00

Max had an event-filled week, with his 15 month checkup (complete with two vaccinations) on Tuesday and his monthly Synagis shot on Friday. Somewhere in there Max picked up a cold; it flared up on Thursday and at Friday's shot the nurse reminded Carolyn that "colds get worse before they get better". And then on Friday night it began to snow.

Katy, we need you!

Max was a little uncomfortable, but he got to bed without much incident. I worked until midnight and then noticed that there was quite a lot of snow. Don't ask me why, but between midnight and 2:00 AM, instead of sleeping soundly, I went out into the blizzard and shovelled snow. Crazy? But consider this: several of my neighbors were also out at that hour doing the same thing. We agreed that we were just trying to stay ahead of the accumulation, but the storm filled the air with snow and electricity. We were elated to see the old world erased in front of our eyes, and keeping the walks clear felt heroic. Well, what do you expect from a bunch of men on Friday night? None of us could sleep.

The night was as bright as day

When we woke up, it was still snowing, and there was no way to keep ahead of it. Max's cold really bothered him, and aggravated his reflux. In some ways, I had forgotten that he even had reflux, but when he threw up his morning bottle, we were right back into the fight again. Carolyn and I cudgeled our heads to remember all of the tricks we had perfected to keep food in Max. He was once again like a fragile waterballoon full of formula. We resorted running 100 ccs or so into him during his naps to keep him from getting dehydrated. We also kept the pump rate below 1 cc/min, burped him after three sucks at the bottle and many other precautions we thought were behind us.

Our theory is that post-nasal drip, combined with the ng tube, really inflames his stomach and interferes with its ability to close the esophagus. Maybe it's crazy, but he certainly had a very runny nose.

No-one looks good in extreme closeup

By Sunday night Max's cold seemed to be getting better. Maybe it's wishful thinking, but Max's reflux (to me at least) also appeared to be subsiding. In a few days, he'll probably be back to his old self. But the weekend was a vivid reminder of how we used to live.

Pushing and grabbing

2010-02-06T01:59:00.002-05:00

Breakfast zoo
Originally uploaded by andreas.lehnert

Max has lately taken to "cruising", or walking while holding on to furniture to help him balance. When given a toy that allows him to stay somewhat upright, Max can manage a controlled topple. In this video, you can see Max pushing his friend O. In addition, Max's obsession with O.'s hair is on display. Perhaps Max--condemned to life as something of a chrome done--is jealous of O's thick, lustrous hair.

You may recall that O. was the victim of a brazen prune-stealing episode in the fall. That case is still under investigation.

The bucket game

2010-02-06T01:55:00.001-05:00

The bucket game
Originally uploaded by andreas.lehnert

Max has started to really enjoy his baths. Part of the fun is playing with his bath toys before getting in. In this video, you can catch glimpses of Max taking great satisfaction in throwing plastic cups into the empty bath. (I apologize for the shaky camera work.)

That underpants look

2010-01-31T16:21:00.001-05:00

That underpants look
Originally uploaded by andreas.lehnert

Felix got new Thomas underpants from his godmother, in hopes that he might show some more interest in leaving his diapers behind. Instead, yesterday during our day of being snowed in, Felix found a new, much more fun application for the undies. Here's Max sporting the "Percy Beret" model.

That pirate look

2010-01-20T21:45:00.001-05:00

With eyepatch
Originally uploaded by andreas.lehnert

As Carolyn mentioned, Max now wears a patch over his stronger eye for half an hour each day. Interesting fact: pediatric eyepatches come in gender-specific varieties. The doctor only had patches designed for girls when Max visited, so that's what he wore for the first week. Since then, we've gotten several boxes of patches designed for boys. As you might imagine, the dominant theme is of pirates; the patches sport cutlasses, boats, and the jolly roger. However, first impressions are hard to shake, and I'll always associate these patches with pink unicorns (shown in this picture).

A few updates

2010-01-19T22:39:00.004-05:00

Max continues to enjoy a stretch of healthy days (since just before Christmas). He's been eating well -- pears, avocados, tofu, Doris' special lentil soup, and cracker snax. I was certain that he had gained a ton of weight over the last 2 weeks, but in fact he gained 2 ounces, bringing him to 20 lb, 7 oz. I was a bit disappointed that he hadn't gained enough for us to cut back his nighttime feeds again, but on reflection am glad that he is healthy, happy, and gaining even a little bit.

Earlier this month, Max had a routine check-up with the ophthalmologist. The good news is that his optic nerve looked good, there was no indication of intracranial pressure, and he still just has pseudostrabismus. But the doc did detect some laziness in Max's left eye, so the plan is to put a patch over his stronger right eye for 30 minutes per day for the next 3 months. If this doesn't strengthen his eye sufficiently, he'll need to have glasses.

Max has been really active lately, and over the long weekend practiced cruising along the sofa and coffee table (he has a few chin scrapes to show for it), climbing stairs, generally squirming around. It is a delight to see. New NG tube today, after a "free" day. We see the GI nurse practitioner on Monday and will get further guidance about the feeding plan then.

A tube-free day

2010-01-19T22:38:00.001-05:00

At the music table
Originally uploaded by andreas.lehnert

It was time for an NG tube change (those things get gross around the 3-4 week mark), so we pulled it out this morning and let Max be free for the day. Here he is playing at one of his current favorite toys - the music table.

Max plays the shell game

2010-01-05T22:10:00.002-05:00

Max is starting to experiment with gestures. He will sometimes wave, although he's probably confused about what waving means because when he flaps his hand at us it sets off a few minutes of furious waving by every adult in sight (house rule--no exception for visitors). But he's always watching us and, in the manner of children, sees and hears gestures and words that we don't realize we're making. For example, Carolyn has been playing the shell game with Max; he likes it and always finds the ball (at some point we're going to have explain to him that he should decline invitations to play on the sidewalks of New York City). Unconsciously, Carolyn turns up her palms when asking "Where's the ball?" When Max now puts a ball down, he will sometimes mimic the gesture, looking like a tiny Borscht belt comedian hitting a punchline. Apparently, Max thinks that palms up means something like "I've put down the ball".

The video below captures some of this, as well as a lot of miscellaneous domestic chaos. (Click here if you can't see the embedded video.)

Max Plays the Shell Game from Codered Summer on Vimeo.

Climbing

2010-01-02T16:02:00.004-05:00

As Carolyn mentioned, Max has recently begun crawling (with help) up carpeted stairs. I took the video below a couple of days ago; I'd say Max has gotten even better at climbing since then.

Stair Climbing from Codered Summer on Vimeo.

One year ago

2010-01-02T11:43:00.001-05:00

Max
Originally uploaded by andreas.lehnert

This picture shows Max in what Carolyn and I referred to as the "McMansion" crib. He had outgrown the little lucite boxes used for neonates, but he wasn't able to survive without intensive medical control.

I can't remember now whether, when this picture was taken, he was in the step-down NICU or still in the high-intensity ward (indeed, the NICU would sometimes consolidate all of their patients into a single room when business was slow). I do see that Max was getting supplemental oxygen via a nasal cannula, something he needed off and on for much of his stay at Georgetown.

Reading back through our notes from late December and early January, I see that Max's clinical situation at the time was still precarious, and that we were considering a variety of surgeries--shunt, Hirschsprung's biopsy and, for the first time, something called a "fundoplication".

I also notice that I expected these matters to be resolved one way or another in the near future. But January 2009 would be a long, tense wait during which nothing in particular happened. (Our insurance company took the same view and retroactively denied coverage for Max's hospitalization in January; they later reversed themselves so we were not impoverished by the stroke of a pen.) In some sense, the whole of 2009 was an exercise in patience. In fact, I would divide the year into thirds: the first third in the hospital, the second third grappling with the hospital-at-home, and the last third watching Max get himself organized and start to make progress.

Crawling into 2010

2009-12-30T21:37:00.002-05:00

Max is ready to leave 2009 behind. He got over his cold&fever bout of November-December, and has had a healthy two weeks -- active and happy, eating well, no sniffles. He has also really taken off crawling and seems to enjoy exploring his environment (see videos at the end of this post). His most recent conquest: going up the carpeted stairs (no videos of this yet). I am happy, grateful, full of amazement and so much more. There were many times in the last year that I wondered whether Max would be able to reach this point. At the same time we are so happy with his progress, I am also guarded -- does taking a small bit of pleasure mean that we'll have to pay a price tomorrow? next week? I realize it is magical thinking and yet can't help myself.

On the eating front, Max's weight stayed stable from Thanksgiving until mid-December. We were disappointed with no weight gain, but the GI nurse's view was that if Max was able to hold stable during the triple-threat (being sick, learning to crawl, and having Doris gone for extended periods during that time), he was actually doing quite well. She advised us to hold the course during the holidays, not weigh him or change his overnight feed volume. Next week, if Max is healthy, we will do another nighttime cut-back and see how he responds with eating during the day.

And now for some video treats to ring in the new year (taken about 10 days ago):

Max's Bottle Chase from Codered Summer on Vimeo.

In the Kitchen from Codered Summer on Vimeo.

The budding athlete

2009-12-06T23:10:00.002-05:00

For the past several days Max and Felix have been enjoying a bout with a classic winter head cold. The best thing about these colds is that they remind me how idyllic life is when the kids don't have colds. In the same way, I wake up every morning and savor the sensation of not having a toothache. (Unless I actually have a toothache, in which case I take far too much Ibuprofen and hope it goes away. a surprisingly effective strategy.) The post-nasal drip and congestion are really hard on Max, because the mucus has to run down the same course as his feeding tube. It seems that his reflux is more aggressive and appetite worse when he's sick. This set of colds appear, knock on wood, to have run their course.

Another double-edged benefit of a cold is that Max is more likely to sneeze out his feeding tube, allowing us to take picture of him without his facetape. Here's a picture of him in the morning sunlight, holding a football:

Max is obsessed with balls of all kinds, and has shown some mastery of the football, whose aerodynamic properties are unfathomable to those of us who had to wait until age 8 to handle one. Indeed, more broadly, Max entertains himself with basketballs, soccer balls and so on for long stretches of time. It is my theory that he has inherited the sports gene that I sadly lack. Either it skipped a generation, or he got it from his mother, or possibly both.

The embedded video below (click here if you don't see it) shows Max catching, throwing and scampering after various balls. Indeed, over the past couple of weeks, Max seems to be diligently studying the fine art of crawling. He doesn't (as you'll see) have the skill mastered, but he's getting better.

Carolyn asked that I produce a concise best-of-Max-crawling video to avoid boring everyone. It's surprisingly difficult to cook 45 minutes of raw footage into a 90 second highlight reel. So far the best I've been able to manage is the seven-and-a-half minute video below. At least you get to listen to Alan Bean describe a sunrise while on a spacewalk.

Max at play from Codered Summer on Vimeo.

Medical Roundup

2009-11-29T11:30:00.008-05:00

It is an understatement to say that, for much of the past year, Max's medical management and feeding issues have dominated our daily (and nightly) interactions with him. But it feels like we are getting to the point where those things, while still constant, are far from the defining features of life with Max.

Especially thinking back to a year ago, Max has come so far: It was the Tuesday after Thanksgiving that Andreas and I met with the neurosurgeon at Children's to get a second opinion on strategies being used by the Georgetown NICU docs to manage Max's intracranial pressure. (It still amazes me that this neurosurgeon responded to our email on the day after Thanksgiving, called us, and arranged to see us the following Tuesday. He is amazing doc, and one we are willing to wait 3 hours to see -- see story below). Max got his last lumbar tap on Thanksgiving day last year; he was still having breathing problems with regular desats, apnea episodes, and heart rate fluctuations; and his reflux would not be evident until a month from now. It is truly amazing how far Max has come. He is one tough kid.

Of course Max's days of medical management, feeding challenges, and therapies continue. Here's an update on his various fronts:

* Hydrocephalus. Max had a CT scan and saw the neurosurgeon Dr. K on Nov. 16. We were at Children's Hospital from 9 am until 2 pm. Long day, but Max handled it like a champ (sleeping for 1.5 hours on my shoulder). The CT showed that his ventricles are stable but still "generous" in Dr. K's words. Max's head is growing and still much larger than kids his age, but his growth in on his own concave trajectory which is expected. Max was throwing the ball around the exam room while Dr. K ran after it. A good time was had by all, and Dr. K said that he would not recommend putting in a shunt at this point. We return to Dr. K in 6 months for another CT and checkup (or before if any signs of pressure appear).

* NG Tube / feeding / weight gain. Max is still fed through the NG tube while he sleeps at night. During the day, he eats pureed food by spoon, little puffs (which he is learning to pick up with his fingers), and formula from the bottle. At a single "meal," he might eat just 1/3 to 1/2 of a jar of baby food, but he does so willingly and we just stop when he turns away. His oral intake of formula from the bottle is anywhere from 200-350 cc per day. His reflux seems to be gone or very well under control, though every once in a while he does have emesis. We think this is from choking on his tube, but maybe the reflux is still a factor. But for now at least, it looks like Max will avoid the fundoplication surgery (where the stomach is tied around the esophagus to stop the reflux).

So Max has shown that he CAN eat by mouth. Why does he still have the NG tube? Well, he's had it for over a year now and his body has become accustomed to it. Why eat by mouth when you can have it delivered directly? We can't just pull it out and let him go hungry for long periods of time because of his nutritional needs for physical and cognitive growth (the GI doc says that studies show it takes monkeys about 2 weeks to develop a normal hunger-eating cycle).

The GI team has given us a plan to wean Max very slowly from the NG tube. If this works, he can avoid getting a stomach tube (G-tube) for feeding. If the process stalls and it looks like the NG tube needs to come out for breathing or speech purposes, then at some point Max may still need a G-tube.

Here's the plan: Max gets weighed every 2 weeks, and if he gains 5 ounces, then we cut back 2 ounces from his nighttime tube feedings. The hope is that he will slowly pick up the slack during the day. We rented a home scale so we can always measure him on the same scale and don't have to take him to a doctor's office just to get weighed. So far, over about a month, Max gained 13 ounces in the first 2 weeks; then 5 ounces in the second 2 weeks. That makes his current nighttime volume through the NG tube 360 cc (or about 12 ounces).

And for the record, Max now weighs 19 lbs 8 ounces, and is 29 inches long.

* Sleeping. Because Max still gets fed through the NG tube at night, he still has to sleep in his crib, on a 30 degree incline, on his stomach, in the Tucker sling while the feed is running. He typically wakes up around 4 or 5 a.m. and wants to move around, but can't because he's strapped in the sling. Because his feed is now ending around 3:30 or 4 a.m., he doesn't need to be in the sling all night. So when he wakes up, we move him to his Pack & Play to sleep for the rest of the night. He seems to like this because he can move around and get comfortable. Instead of waking up for the day at 6 am, he is now sleeping until 7 or even 8 am! This is good, because if he really wants to be part of our family, he CANNOT be an early riser.

* Medicines. Max is now on 4 medicines, delivered at 4 humane times of the day (7 a.m., 3 p.m., bedtime, and 11 p.m.). We recently changed dosages and timing to eliminate the 2 a.m. medicine. Andreas is very happy! Current meds are: Prevacid (for reflux); Erythromycin (an antibiotic which at low doses is used for motility); Culturelle (a probiotic that keeps good bacteria in his stomach); and a multivitamin with iron. As of late September, the pulmonary docs said Max did not need his diuretic (Aldactazide) any more.

* Therapies. Max is getting speech therapy (for eating) once every 3 weeks, physical therapy once every 2 weeks, and occupational therapy once every 1-2 weeks. And of course Doris therapy every weekday.

* Vaccines. Max was on top of the list for the H1N1 vaccine. In fact, we all got a dose back in early October when the vaccines were first available, thanks to Max's high-risk status. At his 1-year physical a few days ago, Max got his second dose of the H1N1 vaccine, his second dose of the seasonal flu vaccine, and his vaccines for DTaP, polio, and something else. I thought we might be in for a miserable weekend, but he seems to have shaken all those vaccines off. Let's keep our fingers crossed.

* Synagis. Max was also approved by our insurance company for a cycle of Synagis this year. It is a monthly shot of antibodies, delivered October through April, to protect against respiratory syncytial virus (RSV). Each shot is pretty expensive, and we are relieved that our insurance is covering this.

That's it for the medical roundup. Keep watching for other more exciting Max updates.

Max's Halloween

2009-11-01T00:26:00.001-04:00

Felix was a dragon; Max was a tiger.

Max's Halloween from Codered Summer on Vimeo.

Birthday montage

2009-10-25T02:19:00.001-04:00

A video montage of the highlights of Max's first birthday.

Max's First Birthday from Codered Summer on Vimeo.

Birthday boy

2009-10-24T23:42:00.003-04:00

Man of letters
Originally uploaded by andreas.lehnert

Here's a pic of Max with his latest hobby: playing with (and chewing on) the refrigerator letters. How germy could they be, really?

Today is Max and Ada's birthday. This time of year, especially this day, is filled with mixed emotions. We celebrate the progress Max has made over his first year and hope for his continued improvement and happiness. At the same time our hearts ache for Ada, the life she never knew, and our lives without her.

Max practices eating

2009-10-14T21:36:00.002-04:00

As Carolyn explained yesterday, we plan to slowly step down the amount of food delivered to Max overnight and attempt to make it up with increased feedings of calorie-rich formula during the day. The ultimate goal is for Max to say good-bye to his feeding tube without requiring surgery to place a semi-permanent g-tube. In effect, one day in the next couple of months we envision pulling out Max's ng tube and simply not replacing it. (PS Did everyone get Carolyn's allusion to Robert Graves?)

However, year-old babies like Max don't live by bottle feedings alone. After all, he's got to put those sharp little teeth to good use. In the video below, a secret camera records Max's attempts to get down some very small crumbs of teething biscuits. He's clearly interested and working hard to get his fingers to cooperate: picking up the crumb and guiding it to his mouth is harder than you might expect. Why then does Max feel the need to transfer the precious crumb from one hand to the other? Practice? (Link to video here in case the embedded player doesn't work for you.)

Max Eating from Codered Summer on Vimeo.

Goodbye to all that

2009-10-12T22:58:00.002-04:00

We're not sure, but we think Max waved. At dinner tonight, Felix was waving and greeting each of us. When Felix yelled "HELLO MAX" and waved to him, Max lifted his arm and made a waving/flailing motion. Of course we tested him a couple more times. And we'll retest tomorrow. This corresponds with a couple of nights of Max not sleeping very well. Our hypotheses are: (1) developmental leap; (2) sugar (he tasted some icing on a cupcake, on the sly); (3) separation anxiety (he gets really irritated if we walk out of the room).

Max seems to be over his ear infection and has been pretty happy this past week. We are tweaking the nighttime feeds, reducing the amount by about 2 ounces (so now he gets about 16 ounces, or 480 ml, through the pump at night), and we're transitioning to all formula. The hope is that he will make it up in PO during the day. Next weight check: Monday 10/26. Maybe Max will be able to wave goodbye to the pump in the next couple of months.

All ears

2009-10-05T21:16:00.004-04:00

About a week ago, Max started exhibiting some new behaviors -- whacking himself on the left side of the head, not sleeping well, hating diaper changes, and to top it all off--running a fever starting on Wednesday morning. We took him to the pediatrician, who diagnosed an ear infection and put him on a 10-day course of an antibiotic (Amoxicillin). Max continued to have fever and a rough couple of days when he was cranky and just not his sunny, active self. On Sunday, his chest and back were covered in spots. Today, we took him back to the pediatrician, who determined that Max is allergic to the Amoxicillin, and put him on a 3-day course of an alternative (Zithromax). His ear infection is looking better but still with him. Max is already showing signs of returning to a happier state.

As soon as the ear infection is beat back, we have a plan (with the blessing of the GI docs) to cut back Max's nighttime feeds and see what he can take by mouth during the day. We don't want to try this while he's not feeling well. We have an appointment with the GI clinic at the end of this month to report in.

In other news, Max was just approved for a Medicaid waiver (the Elderly or Disabled with Consumer Direction, or EDCD waiver). This is typically for older people, but the local Early Intervention staff told us that Max might be eligible and helped us figure out how to apply. This will allow us to use a nursing agency to provide nighttime respite care. We're still figuring out exactly what the parameters of the program are.

This afternoon, Max slept from 3-6 p.m. That meant he didn't go to bed for the night until almost 8 p.m. And THAT meant that the four of us got to have dinner together and play together in the sunroom tonight. And that was really nice.

Medical round-up

2009-09-24T21:30:00.002-04:00

In addition to Tuesday's visit with the GI docs, Max has had a couple of other recent visits to specialists. A few weeks ago he saw PG, the developmental pediatrician, and today he saw the pulmonary/apnea clinic. These "lung docs" released Max from their specialized care and turned him over to our regular pediatrician for observation. In addition, they recommended that we stop giving Max nightly doses of aldactazide, a diuretic. During Max's stay in the NICU he was on powerful diuretics to control his pulmonary oedema and, thus, to help him breathe. (For a stroll down memory lane, click here.) This is the first time since Max has come home that we've discontinued a medication. I left the pink bottle in the fridge while preparing the full set of tomorrow's medications tonight; it was surprisingly gratifying. I'll be very excited when we stop giving him the erythromycin: that's the medication he gets four times a day, including a vitality-sapping 2:00 AM delivery.

A few weeks ago Max saw PG, the developmental pediatrician. She graded Max as having the development of a normal six-month-old. Prominent among Max's cognitive lacunae -- according to PG -- was his failure to understand object permanence. However, Carolyn and I diagnose Max as merely being easily distracted. When a toy vanishes from sight, we think that Max still knows that it exists; however, we think Max doesn't care about it anymore and immediately starts looking for the next distraction. In a way this another milestone: When Carolyn and I first started flatly rejecting the diagnoses of a specialist. However, PG does agree that Max is easily distracted and prohibits him from exposure to television, video screens and flashing toys. That's something we completely agree with.

All of this good news has to be seen against the backdrop of Max's serious brain damage. When the NICU team brought in a pediatric neurologist to give us the bad news back in February, I remember thinking that Max would have his revenge against his doubters when he graduated from Harvard, even if he had to limp across the stage to get his diploma.

Max, however, may have recently expressed an interest in attending a different college:

Son, hell does freeze over.

Max dodges another bullet

2009-09-21T23:00:00.003-04:00

Max saw his gastroenterologist, Dr. K., today. I had made this appointment back in the early part of August, just trying to grab the first available, and not really knowing what Max's reflux would be like at this point. Dr. K was very pleased with Max's progress, and in fact told me that in reviewing his notes before our appointment, he thought we would recommend a fundoplication (where the stomach is wrapped around the esophagus to tie it off) and G-tube, to give Max relief from his reflux. But, on hearing about Max's improvement in terms of fewer reflux symptoms and better eating, Dr. K. said we shouldn't go down that road.

The plan is now for Max to get a total of about 800 cc per day; and 600 of that needs to be milk or formula. Max will continue for the foreseeable future to get 540 cc through the pump during the night. And during the day, we make up the remainder with formula and other foods (including watered-down food in the bottle). The idea, of course, is eventually to get rid of the NG tube. We'll see how much more Max can take in during the day. He may still need a stomach feeding tube at some point in the future, if it looks like he is just not able to take in enough during the day for the longer term. We return to GI in about a month for a reassessment.

Max weighed 17 lb, 12 oz today, and was 28 inches long. (He was 17 lb, 4 oz on Aug. 24 and 18 lb 2 oz on Sept 10. Each of those three measures, though, were on different scales.) Max's height now puts him at about the 18th percentile for his actual age (up from about the first percentile earlier this summer), and above the 50th percentile for his adjusted age. All that stretching he's doing must be helping!

Bedtime feeding

2009-09-14T21:55:00.003-04:00

Max was extremely distraught last night and had a lot of trouble getting to sleep. At the time, I thought he was suffering the aftereffects of the NICU reunion. Now, though, I wonder if he was just hungry? Our friend D. ("the baby whisperer") gave Max a bottle at 7:00 PM--his usual bedtime--and he sucked it down. We haven't heard a murmur from him all night. And with one extra feeding, his PO consumption really jumped today.

Happy Birthday!

The NICU Reunion

2009-09-13T15:54:00.002-04:00

Georgetown's NICU held a reunion on Saturday, inviting all of their former patients to spend an afternoon on one of the hospital's terraces. I had a strong impulse to attend, one that I don't quite understand. I think it came from equal parts desire to show off Max to the NICU staff, who knew him earliest, and during some of his darkest moments and a desire to stand up for all the NICU patients who aren't indistinguishable from other children. Indeed, among the hundreds of children I saw running around the reunion, I only saw two others with obvious disabilities.

The noise, crowds and confusion of the event clearly confused and disturbed Max. His therapists have noted his tendency to disorganization; indeed, Max is prohibited from watching television or being around electronic toys for precisely this reason. The reunion clearly overstimulated him. He cried more or less constantly except when I was holding him and he was agitated for the rest fo the day and night. Max, it seems, does best in his own house, with his few, but devoted, friends at hand.

Nonetheless, we got to see many of Max's old friends again. Although, as Carolyn said, it did feel like tempting fate, and although we did pay for it later, I am glad we went.

Here is Max with Nurse B. back in early November 2008:

Then

Nurse B. and Max met up again yesterday:

And now.

Dr. R. was the first to supervise Max on a trip to the out-of-doors in the very late winter:

Feb. 27, 2009

And Max met up with her again yesterday:

Yesterday.

The haunted mind

2009-09-07T22:15:00.003-04:00

During this three-day weekend, Carolyn and I got Max to take an average of 282 ccs/day PO. This is a new record for us. What's more, it's above the average 261 ccs/day that our friend D. ("the baby whisperer") got into him during the preceding week. It's all due the remarkable surge in Max's PO interest over the past few weeks.

Carolyn, D., and a variety of therapists tried for months to get Max to show an interest in PO feeding. They tried different bottles, nipples, thickening agents, levels of lip, cheek and chin support and stimulation, times of day, positions (prone, sitting up, etc), and attempts limited to different levels of alertness ("he's sleepy! quick, get the bottle!"). As failure mounted on failure various culprits came in for blame: the ng tube, food allergies, and, most commonly, Max's hydrocephalus.

I'm no expert, but it strikes me that if it was in the power of medicine and therapy to get Max to become a better eater, it would have happened long ago. As far as I can tell, a deep and inaccessible switch in Max's brain flipped from "off" to "on".

Actually, my favorite simile is of a haunted house. Imagine that a normal kid's brain is like a 21st century house. He's getting information via internet, phone, television and he's sending out instructions on the same channels. Around birth, most of these connections to Max's brain got severed. He's been wandering around in a house with no TV, no telephone, and no internet. Every once in a while he hears spooky voices through the radio or echoing up the pipes. As time has gone on, he's come to recognize those voices as messages from organs that would normally be communicating via email. I like to imagine Max twirling the knob on his radio and suddenly, through the static, hearing his stomach. Then, by trial and error, he finds he can send messages to the stomach using Morse code and banging on a heating pipe. Painstakingly he taps out an urgent message: QUITTHROWINGUPALLTHETIMETHANKYOUMAX.

Time for a new ng tube

2009-09-07T00:59:00.003-04:00

Another fine day for Max's PO feeding (see updated graph below).

I was daydreaming that Max's current ng tube might be his last--if his upswing in PO feeds continued at its current rate for a whole month, he could conceivably hit 900 ccs PO per day by the end. And then, when it was time to replace Max's ng tube, we might just leave it out.

Max, of course, chose tonight to pull out his ng tube. Another ironic punishment for a karmic sin! I'm getting sick of them.

Getting new ng tubes in has become more and more difficult as Max has gotten stronger. Tonight, Carolyn prepared a procedure area in the basement, complete with pre-cut lengths of tape, a new ng tube, lubricants, skin prep, a stethoscope and syringe. When she signaled that all was ready I scooped Max out of bed and hustled him downstairs as quickly as possible in the hope that he'd still be asleep when Carolyn inserted the new ng tube.

Of course, there's nothing quite like having a tube shoved up one's nose to interrupt peaceful sleep. Max fought like a Trojan but Carolyn kept a steady hand and managed to slip the tube down this throat at just the right moment (when he's swallowing in preparation for a fresh round of yelling is best).

Max quickly fell back asleep, and will likely chalk it up to a bad dream.

Amount PO

2009-09-05T21:35:00.002-04:00

Data through today's feeding. Yes, Carolyn and I didn't manage to get as much into Max today as D. ("the baby whisperer") did yesterday, but yesterday's total was 310 ccs. That's like a number from a science fiction movie.

Of course, the food we're putting into him during the day isn't the concentrated, fortified ultra-rich nourishment that goes into him at night, so you can't quite compare volumes. We're keeping the night-time volume around 650 ccs until we talk to a GI/nutritionist. But maybe a bunch of peas and rice and cereal aren't that different? And on Friday, Max got down two separate 100 cc bottles.

It was just a month ago that Carolyn and I would start with a 50 cc bottle and struggle with Max for 30 minutes and then kid ourselves that he'd gotten 10 ccs down. (In fact, because the thickening agent would sometimes continue to expand after being mixed into the bottle, I once finished with more than I had started with.)

Can you spot the trend break?

Are these eyes crossed?

2009-09-03T20:59:00.002-04:00

Eyes that appear chronically misaligned in infants can be a sign of strabismus, a condition in which the muscles of the eyes do not coordinate. Strabismus is common among premature infants, and can be a sign of hydrocephalus. Carolyn and I have been convinced for a while that Max's eyes aren't quite aligned properly. What do you think? (click for a larger picture)

These eyes look kind of funny, right?

Carolyn took Max today to see M., a pediatric ophthalmologist, who, coincidentally, last saw Max on Christmas Day of last year. Back then he was still in Georgetown's NICU. M. earned a place in our hearts by ruling out retinopathy of prematurity, a truly awful disease that strikes only premature infants. Upon first seeing Max, M. certainly thought that he had strabismus.

More careful examination, however, revealed Max to have pseudostrabismus, the mere appearance of crossed eyes. M dilated Max's pupils and had a look at his optic nerves; because these are outposts of the brain, they can show signs of increased intercranial pressure. Max passed that test as well.

Stealing prunes

2009-09-02T20:26:00.005-04:00

Max spends his days with his friend Baby O., who is fond of prunes. Lately, Baby O. has noticed that some of his prunes are going missing. Carolyn captured some photographic evidence that might shed light on this mystery--can you guess where Baby O.'s prunes are going? (Click the picture for a larger size.)

PO Commando

2009-09-01T21:44:00.003-04:00

PO, from the Latin per os, meaning "by mouth".

Since last December, PO feeds for Max have gained greater and greater prominence. While he was still at Georgetown, the NICU team told us that to leave the hospital, Max would have to be able to stay warm in an open crib with just a blanket, weigh more than 1,800 grams, and be able to feed himself PO in less than 30 minutes. The NICU team warned us that Max might go home with an oxygen tank and a monitor, but that they didn't send babies home with ng tubes. We didn't focus too much on Max's ability to feed himself PO; after all, we learned that the suck reflex didn't develop until the 32nd or 34th week of gestation anyway, so no-one expected Max to feed himself in those early days.

And back in that wintry season Max had many other immediate problems; I would scrub in at the NICU's big sinks and stare through the glass at the little astronauts, more often than not seeing the NICU team huddled around Max's isolette-cum-space capsule as they considered his latest alarming symptoms. Max battled almost every single woe that could afflict a NICU resident: NEC, hydrocephalus following brain hemorrhages, chronic lung disease and some kind of heart murmur. I didn't pay attention to the tiny little tube running into his nose, held in place with a small bit of tape, often cut in the shape of a heart by the Georgetown nurses.

Several months later, after he had shaken everything but his reflux, we learned that many parents were deemed capable to handle infants with ng tubes, or even more serious feeding systems such as nd or nj tubes. And in the months since he's come home we've mainly focused on his reflux. Medical adjustments, surgical consults, speech therapists, and occupational therapists have all given their professional advice. But Max's progress was halting at best. He frequently vomited. He wasn't good at PO feeding.

So it was that Carolyn and I had resigned ourselves to a holding action until Max was old enough to meet one of the criteria for one of the surgeries that purported to cure reflux (all of which have at best mixed success rates). The problem is that the connections between Max's brain and big parts of his body were scrambled by the damage his brain sustained early on. His problems eating, holding food down, sitting, relaxing his leg muscles and turning over are all related. Max's brain knows that his esophagus and stomach need to tighten up, and it's shouting at the top of its metaphorical lungs, but the trunk (including stomach and esophagus) can't hear. All the rest of Max's body is getting the message loud and clear, leading to his generally stiff tone. And of course there's no surgery or medicine that can repair the crossed and damaged wires between Max's brain and his muscles.

But now, for the first time in many months, Carolyn and I are considering whether to allow ourselves a measure of hope. Max has started showing off some control of his core body muscles. He's sitting up with minimal assistance. He's started flipping from his stomach to his back and vice versa. And, most remarkably, he's showing unmistakable signs of developing PO feeding skills. Not only is his daily PO volume increasing, today he spent some time with his friend O., a baby of similar age, and ate O.'s prunes.

I don't want to dwell too much on this point, but Carolyn and I are tough now in a way we could never have imagined a year ago. We can take devastating news from a neurologist and laugh, literally laugh, at his discomfort. But I had forgotten how good news, and the hope it tries to spark, can slip past our defenses and leave us open to intense emotional turmoil. Could it be that Max has turned a corner? That he may again have escaped the surgeon's knife? Carolyn and I will always bet on Max. In the end, we are helpless not to hope that Max has finally gotten through to his stubborn trunk muscles.

Here is a graph of Max's PO feeding volume.

Tasting

2009-08-29T21:08:00.003-04:00

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.

PTSD and the NICU

2009-08-28T22:08:00.003-04:00

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!

2009-08-28T21:47:00.003-04:00

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:

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

Max and the Red Balloon from Codered Summer on Vimeo.

The unexpected connection between hips and lips

2009-08-26T21:25:00.004-04:00

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.

What happened last night

2009-08-25T21:16:00.002-04:00

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:

No longer a danger to others

2009-08-24T21:25:00.002-04:00

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:

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):

Chicken pox and possibly unrelated personality developments

2009-08-22T23:37:00.003-04:00

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.

Chicken Pox, Day 5

Amount by mouth

2009-08-22T22:49:00.006-04:00

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

2009-08-21T22:02:00.003-04:00

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

2009-08-20T00:00:00.002-04:00

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.

Attention, Medical Students!

2009-08-18T07:58:00.003-04:00

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.)

Can you find the spots?

Max in Pox, Sir

2009-08-17T21:50:00.003-04:00

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!

Endurance tests

2009-08-12T20:50:00.003-04:00

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.

Max and the monkey

2009-08-10T21:20:00.001-04:00

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

2009-08-10T20:43:00.002-04:00

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.

Time flies

2009-08-07T15:25:00.002-04:00

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 except....food. Oh, and he has two new bottom teeth.

Max's latest tricks

2009-06-30T21:30:00.003-04:00

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

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

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

Here Max is pushing himself up:

And here is a picture of Max collapsed on his face after the exertion.

Resting up for the next struggle

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

Max's fine motor skills have also improved. Here he's holding a bottle. He won't do anything useful with it, like sucking it dry, but he can handle it pretty well.

This is a fun toy--what am I supposed to do with it again?

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

It's like a pacifier that I always have with me

And when he encounters something new, his first instinct is to gnaw on it:

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

Max started on his back, grabbed his feet and slowly toppled over

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

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

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

A visit to the GI clinic

2009-06-29T21:20:00.003-04:00

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

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

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

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

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

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

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

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

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

Flickering

2009-06-26T20:43:00.002-04:00

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

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

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

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

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

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

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

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

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

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

Feeding baby birds

2009-06-14T21:43:00.001-04:00

Feeding baby birds
Originally uploaded by andreas.lehnert

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

Progress bar

2009-06-12T21:37:00.006-04:00

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.

Television and children

2009-06-09T21:46:00.003-04:00

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

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

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

Without a nose tube

2009-06-09T21:39:00.001-04:00

Without a nose tube
Originally uploaded by andreas.lehnert

Max pulled out his nose tube early today. Carolyn and D. ("the baby whisperer") gave him all day to be free before they reinserted the tube. It was just as traumatic as you could imagine, with the tube emerging out of his mouth several times.

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

Visit to the phrenologist

2009-06-08T20:58:00.004-04:00

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

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

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

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

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

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

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

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

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

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

Max is better

2009-06-07T15:38:00.005-04:00

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

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

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

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

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

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

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

Another report card

2009-06-04T21:44:00.004-04:00

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

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

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

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

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

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

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

A trip to the apnea/pulmonary clinic

2009-06-02T20:41:00.004-04:00

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

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

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

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

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

Play is physical therapy

2009-05-31T22:22:00.001-04:00

In this video, Carolyn puts Max through his paces: rolling over, stretching and some tummy time, all the while convincing him that it's part of a game. Max, like all children and first-time actors, can't stop from staring at the camera. When I'm not filming him, he focuses a lot more on Carolyn and smiles even more.

PT with Max from Codered Summer on Vimeo.

Max's Tricks

2009-05-31T22:17:00.003-04:00

This five-minute video shows Max doing some of his tricks. Max is watching us eat dinner (including Felix encountering seaweed salad for the first time) and chewing on his blanket, perhaps out of sympathy. We've got the tray latched on to his kidcart; it makes a convenient place to store toys.

You can hear Carolyn and me discussing the fate of a bowl of Felix's cereal, where we resort to spelling out key words. I got H-A-L-F-W-A-Y through a bowl before I decided it was D-I-S-G-U-S-T-I-N-G.

Max's Tricks from Codered Summer on Vimeo.

Cheers!

2009-05-30T21:03:00.001-04:00

Cheers!
Originally uploaded by andreas.lehnert

A strange meteorological phenomenon is gripping the Washington area--newscasters agree that the weather is no longer trying to kill an unprotected human. We took advantage of the weather to enjoy dinner on our back deck. For the unfamiliar, the "deck" is a rude wooden platform cantilevered off the side of the house; it is mainly used to repel pirates, but does just fine as an informal seating area.

In the picture, I am toasting Max. I am enjoying a snippy sauvignon blanc from Trader Joe's; Max is enjoying an excellent fortified MBM.

Carry-out PT

2009-05-29T20:59:00.006-04:00

Carolyn and I are getting Max a la carte physical therapy sessions; although he has a pretty settled routine of speech and occupational therapy, we are still looking for an available physical therapist. Until now, all the therapists have come to our house. Today, Carolyn took Max to a therapy center, a sort of carry-out PT. It wasn't such a big hit with either mother or son. We'll see what else is on the menu next week.

Max's fontanel has really felt quite full to us over the past few days. This past Tuesday, Dr. J. found that his head circumference had increased 0.75 inches in the previous week. Taken together, the evidence suggests that Max isn't pulling off the incredible last-minute change in his body chemistry he would need to avoid a shunt. Our next appoint with the Children's phrenology service is a week from Monday. The long drama of Max's flirtation with hydrocephalus is probably drawing to a close, while an exciting new book on managing an indwelling shunt is about to begin.

I knocked off work early today and got home in time to give Max his bath and put him to bed. After a week of only seeing him during the night shift, I was struck again by how fundamentally happy he is. He seems to find the world a source of endless delight. I tried to get a picture of him flashing his trademark gaping grin or his delighted laugh, but like many children he gets very solemn when the camera comes out.

Instead, I took a picture of Max on his wedge trying to get to sleep. This is the one part of the day where he's really quite unhappy. It's the start of the night shift, I suppose. Max "swims" on his wedge, churning his arms and legs around, while Carolyn or I try to soothe him. He eventually settles down and sleeps quite deeply for the first part of the night.

Here is a picture of Max swimming on his wedge:

Job posting

2009-05-27T23:00:00.004-04:00

Wanted: High-energy, goal-driven achiever to support a young, high-growth entrepreneurial enterprise. Duties include scheduling visits by, and managing the egos of, multiple medical professionals, negotiating and manipulating interlocking bureaucracies, planning, executing and tracking complex financial transactions, and operating light machinery. Must be able to divide accurately by 43.

Max could really use a professional manager to schedule and track all of his appointments, therapists, medical records, hospital visits, insurance forms and so forth. For now, he'll have to make do with just us and our total inability to divide accurately by 43.

I'm thinking of Max's schedule because we finally had a physical therapist come to visit. The HSC team had suggested that Max receive physical therapy twice weekly. The available physical therapists in Arlington are so overwhelmed with other patients that this was the first possible appointment, and we will not be seeing this therapist again.

That said, Max had a great time, and Carolyn felt that she learned a lot of new techniques from the therapist. The therapist noted that Max's cognitive awareness and ability have outstripped his physical frailties. He isn't able to reach for the toy, but he clearly wants the toy, and this is a good sign.

Among the toys that Max really likes are, of course, his feet. The therapist at one point brought Max's feet up near his face. He reached out and grabbed them, the first time he's done so.

The biggest loser

2009-05-26T22:03:00.004-04:00

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.

At the chalk party

2009-05-25T21:01:00.001-04:00

At the chalk party
Originally uploaded by andreas.lehnert

Max looks on while Carolyn and Felix debate what to draw next ("Sailboat!", "Okay, what color?", "White!", "As it turns out, you have the white", etc.) Everyone enjoys drawing all over the street, but I think that our neighbors might be glad of the rains.

Breakfast scene

2009-05-25T20:49:00.001-04:00

Breakfast
Originally uploaded by andreas.lehnert

This is a common breakfast scene. Felix is getting some cereal while Max looks on. In this case, Max is in his kidcart; he's often in his bouncy seat. The kidcart has a tray that allows him to play with toys and has other benefits. I have my reservations about the kidcart, but that's a discussion for another day. If nothing else, the kidcart lets Max have a better view of that which he is most fascinated by: his older brother.

In the bouncy seat, on the deck

2009-05-24T22:01:00.001-04:00

In the bouncy seat, on the deck
Originally uploaded by andreas.lehnert

Max is fascinated by his brother. He's also picked up a habit of pistoning his right leg more than his left. In this video, he's enjoying the antics of his brother and cousins on our deck this weekend. This certainly is nothing like the hospital.

The night shift

2009-05-24T20:45:00.003-04:00

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.

Breakfast on the deck

2009-05-23T10:47:00.003-04:00

One of the many winter storms that hit Washington this year smashed up the table we had on our deck. This morning the replacement table arrived, and we wasted no time in enjoying both the table and the warmer weather, which also arrived this morning. (Last week there was "patchy frost", not to mention "bitter cursing".)

Felix insisted on bringing out the school bus to have breakfast too:

Max started off playing with his star, but he was also (as usual) fascinated by his older brother. This isn't quite yet a mutual admiration society, but so far open hostilities haven't broken out. Carolyn and I are planning a series of confidence-building measures. Here's Max holding his toy star:

Breakfast was interrupted by a roaring sound. Was it a neighbor doing some construction? An airplane? Felix correctly identified the sound as a helicopter:

Close examination revealed it to be a "white top", part of the presidential fleet. They often circle Arlington on Saturday mornings, presumably for exercise.

Then it was time for Max to get his breakfast:

It's important to take time out during feeding sessions to play. Important to me, that is; I'm not sure whether this is approved procedure. Max enjoys playing the "hand game", where I help him clap his hands.

Then we tried Max in a couple of other positions:

In the end, Max managed just a few sips from the bottle, despite gumming enthusiastically at it. We blame the bottle's slow-flow nipple; at the noon feeding we'll try a turbo nipple for a change. It is true that our friend D. ("the baby whisperer") is able to get Max to take the entire bottle without resorting to high-throughput nipple technology, but it's possible she doesn't have to contend with the same distractions that we do:

Max in action

2009-05-22T22:11:00.004-04:00

Our friend D. ("the baby whisperer") took a video of Max today. She said that it was the kind of thing that if she had just told us about it, we wouldn't have believed it. And she's right: the video shows Max holding his bottle and drinking from it. Of course, he doesn't hold it particularly well (the video shows D. helping him pick it up after he drops it), and he doesn't get a lot down. But I'm not going to cavil at his performance.

You can also see that Max is delighted by his feet and that he likes to look at people--in this case, he's looking at D., who is taking the video. Oh yes, and you can see that Max likes his feet so much he likes to spend time with his legs sticking out so he can keep an eye on his favorite toys.

Max in action from Codered Summer on Vimeo.

A visit to the GI service

2009-05-18T21:01:00.003-04:00

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)

2009-05-17T19:55:00.002-04:00

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

2009-05-16T20:32:00.006-04:00

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.

Getting caught in the rain

2009-05-16T20:32:00.001-04:00

Under the bridge, in the rain
Originally uploaded by andreas.lehnert

Now that Max is home, he can experience the full range of sensations offered by life outside of the hospital. And one of those is the feeling of rain pelting down amid impressive thunder and lightening. (Not to mention the sense of speed as his father races the stroller to shelter.) Here, Max and an unknown biker wait out a thunderstorm under a bridge.

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

2009-05-15T21:22:00.003-04:00

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

2009-05-11T21:50:00.005-04:00

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:

Keep it fun! D. sings, tickles and otherwise "gives him input" (e.g. pushing his legs)
Wrap him up--some babies enjoy being swaddled, and it increases their sense of organization.
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.
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.
"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.

The discreet pleasures of the second act

2009-05-08T22:09:00.006-04:00

Last week, everything was new. We had to get the nursery ready (finally)! We had to figure out the pump! The monitor! The medicine schedule! We had our first meetings with the pediatrician and the therapy team. Each of those meetings was really intense, with all of us, including Max, totally focused on figuring out the plan. The room was buzzing with the energy everyone brought, and even Max, who knew he was auditioning for the part of Most Interesting Baby Under My Care, put on major performances at each meeting. Throughout it all, Carolyn and I felt a real sense of progress and direction.

This week, the pump, monitor and medicines are just tools in the home hospital. Carolyn met again with the pediatrician and the therapists, as she will every week for the next couple of months. She reports that everyone was flatter, including Max. For example, Max didn't do very well feeding from his bottle when the therapist was watching, despite having had a string of great days. And it feels like Max's care is a little more aimless, with the team more or less keeping the same regimen. Certainly that initial sense of excitement has dissipated, leaving Carolyn and me to face the quotidian reality of Max's second act.

Actually, although the second acts of most plays can be pretty forgettable, I can sort of see what this is going to be like, and it's going to be good. Max will make incremental progress, with some inevitable setbacks, of course. It's unrealistic to expect a constant stream of dramatic changes like the ones Max has gone through over the past couple of weeks. After all, how often can he come home from the hospital? (Answer: just this one time, I sincerely hope.) And while we won't really notice it, as the months go by, Max will mature and overcome some of his challenges.

Max's second act is off to a good start. I drove home tonight to find Max, Felix and Carolyn in the front yard enjoying a late spring evening. And Max isn't picking up new tricks, but he is improving on his old ones. He is now given to full-on belly laughs. He is absolutely delighted to have his mother tickle his feet.

The trick to this new phase is to actually enjoy each day. The past six months in the hospital were a raw torrent of emotion. Now we have to consider the possibility that we might all, as a family, have actual, drama-free, fun. It's enough to live in this moment, and not to think about what the third act might bring.

Thriving at home (so far)

2009-05-06T21:44:00.003-04:00

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:

Another visit to the phrenologists

2009-05-04T19:21:00.004-04:00

Carolyn and I took Max to Children's today for another visit with the irrepressible B., the pediatric neurosurgeon who is following Max's hydrocephalus and evaluating him for an indwelling shunt. I took Max to visit B. a month ago. At that visit back in March, B. described Max's ventricles, which are swollen enough to make for a terrifying x-ray, as "generous", thereby earning our undying loyalty. B.'s latest bit of uplift was to describe Max's severely delayed progress as "hitting his milestones at his own pace".

Unfortunately, if Max's ventricles used to be generous back in March, they've since evolved into Mother Theresa. As part of our visit, Max got another CT scan on his skull. B. showed us the most recent results compared with those taken back in March. To the untrained eye, Max's hydrocephalus has gotten markedly worse. To the ever-optimistic B., Max's hydrocephalus had maybe gotten 2 percent worse, or possibly 5 percent, or maybe 10 percent at the very most. His head circumference (which we aren't monitoring daily anymore) has also increased. However, while not yet dangerous (one hopes), at this rate, Max will absolutely need a shunt in the next couple of months. B. has scheduled a follow-up visit for early June. My guess is that if Max's ventricles do anything but become less generous between now and then, B. will schedule Max for surgery. As he was wrapping up, B. gave us his standard line that he was "going to bet on Max".

Perhaps it's simply the exhaustion, but Carolyn and I face the prospect of the coming month's uncertainty regarding Max's shunt with equanimity. In the hospital, we were in a largely passive role: things happened to Max, nothing was under our control. Now that Max is home, we control his feeding schedule, his environment and we make sure he gets sufficient and correct therapy. For the first time in six months, there's a lot of Max's care that we control. Allowing those parts we can't control to play out is somehow easier now.

Here's a picture of Max getting a CT scan of his head:

Max is babbling a lot more

2009-05-04T08:17:00.003-04:00

Max & the rattle
Originally uploaded by andreas.lehnert

Just a couple of weeks ago, while still at the HSC, we thought we heard Max emit his first few coos. Last week, at our first appointment, the pediatrician coaxed a few gurgles out of Max. She then asked us whether we had heard him using consonants. Who knew the fricative was such a developmental milestone?

Over the past few days, Max has been babbling a lot more. I've been listening for consonants but I can't pick them out of the liquid stream-of-consciousness speaking style Max prefers. I'll leave it to the pediatrician to decide later this week. In the pre-dawn darkness today I tried to capture his logorrhea, but Max broke off his monologue to play with the video camera and the rattle. I'll be on the lookout for my next chance. In the meantime, please enjoy Max being alternatively delighted and frightened by his rattle.

His babbling has an edge of tension to it: if you weren't looking at him, you would think that he was crying, or getting ready to. But he does it all with a big smile on his face, and he usually doesn't break into tears, so he must not be in distress.

On a related note, Max is fascinating by people talking. Carolyn and I were chatting in the kitchen and we noticed his head tracking from speaker to speaker, like at a tennis match. We've seized on this interest to also make a big deal out of eating. "You see, Max, mommy and I are using our mouths ... to eat ... and we've got big smiles on our faces so it must be fun". He doesn't seem ready to give up the tube just yet though.

The home hospital

2009-05-02T19:12:00.005-04:00

Since Max came home Carolyn and I have been operating a small-scale low-intensity care facility from our home. We've become so proficient that we're thinking of running a special needs infant day care center as a way of supplementing our income.

All kidding aside, managing Max's care seemed absolutely overwhelming at first, and, although we've started to settle into a routine, it remains a lot of work. However, it's rewarding work: Max loves getting a sponge bath, for example. In addition, as we gain confidence, we're tweaking Max's care based on our own thinking of what he needs. Of course, our first tentative steps away from the care instructions we came home with resulted in Max losing weight--a big deal for recently released babies. But, seriously, who makes any progress in life without a few missteps? We're learning as we go along.

Because Max can only tolerate a tiny amount of food by mouth, we rely on a pump hooked up to his ng tube to deliver almost all of his calories. If he's going to get over his reflux, he's going to have to get big and strong. Here's a picture of the pump:

The big metal pole is just that: a big metal pole to hang stuff from. The pump is the small box about half-way up. It's an infinity orange model enteral feeding pump. Every morning we break out a new plastic food bag to hang from the metal pole. Max gets formula during the day and fortified breast milk at night. This model pump can handle both formula and the thinner breast milk. The pump has a battery pack that we charge at night and comes with a discreet backpack: we can be extremely mobile, a thrilling though somewhat disorienting prospect.

Max gets a variety of medications delivered through his feeding tube. We use regular syringes:

From the bottom to the top: a probiotic solution, erythromycin (an antibiotic with prokinetic properties) and sterile water to flush the drugs out of the feeding line and into his stomach. Max mainly gets drugs to help control his reflux, although he remains on a small dose of aldactazide (a brand-name combination of diuretics) left over from his lung problems in January. The idea is to let him "grow out" of the dose. The dosage of the other drugs will increase with his weight. Here's a picture of Carolyn delivering medicines (I love the expression on Max's face):

Over the course of the day, Max gets 19 separate doses of drugs, vitamins and so on. We find it easier to make a day's worth of medicines all at once and store them in baggies:

To keep all of this straight, Carolyn put together a daily schedule for Max with his feedings (attempts with the bottle, formula, breast milk etc) and drugs. In addition, we try to record notable events, although the definition of "notable" is becoming a little plastic. Here's a picture of a schedule, sitting next to a recipe for Max's formula:

(If you look closely you can see arithmetic in the margins--there's a great deal more long division than I would have thought.)

At night, we hook Max up to his monitor. Thankfully, he left his pulse-ox meter in the hospital, but we do still keep track of his breathing and heart rate. In my opinion, the monitor looks like a Soviet tape-deck, but we're told it's the latest thing in home health care:

The monitor is connected to two leads taped to Max's chest: one measuring his heart rate, and the other measuring his respiration rate. Which is which? You don't want to get them backwards, or the monitor will think that he's taking 170 breaths per minute, but his heart is only 40 beats per minute. There's a handy mnemonic we use: "white on right". Ah-ha, but whose right? (Max's). And who can tell their right from their left in the night? Here is a picture of Max's chest, showing the leads. The leads are sticky, but can't stand up to baby sweat, spit up, etc, so we've added extra tape to hold them in place:

Finally, we keep tabs on Max using a video camera we placed in his room. We had a sound-only pickup in Felix's room that we dubbed "Radio Free Felix". We haven't decided which cable news network the video system best resembles yet.

The monitor has a night-vision feature, showing a grainy black-and-white image in low light. Squinting at the tiny screen always reminds me footage of people watching the Apollo landings back in the 1970s.

Considering a normal family life

2009-05-01T21:45:00.003-04:00

Felix and the red ball
Originally uploaded by andreas.lehnert

This picture shows a scene that would have been difficult to imagine even a week ago. Carolyn, Max, Felix and I are all playing outside. (Max, interestingly, is totally fascinated by his older brother.)

Here, Max is already hooked up to the pump delivering his nightly feeding. However, the pump can be carried in a discreet backpack and operated on battery power, so we're completely mobile.

Carolyn and I are considering the meaning of a normal family life for the first time since she went on bedrest last summer. We're still cautious, but we are considering that the four of us might ... go to a park ... together. I'm still thinking this through.

From January 11

2009-04-30T21:22:00.002-04:00

Max pulls on his ND tube
Originally uploaded by andreas.lehnert

Here's a video from the archives. Max is still at Georgetown, in the high-intensity side of the NICU. This video was taken during the period when Max had his NG tube pushed into his duodenum in an attempt to cut down on his reflux-related aspirations. At the time, these aspirations were seriously damaging his lungs' ability to maintain a high blood oxygen concentration.

Max can be seen pulling at his tube; in fact, later that night he would successfully pull it out.

He pulled out his NG tube here at home a couple of nights ago. Fortunately, placing an NG tube is relatively simple matter. Forcing a tube into the duodenum or further (e.g. into the jejunum) is a more serious matter, requiring skilled nurses, an x-ray and a couple of hours.

I may try placing an ng tube into my own stomach just to see what it's like.

Meeting with the early intervention team

2009-04-28T19:45:00.003-04:00

Carolyn and I felt a little unmoored after we left HSC. We went from being around doctors and nurses all day to managing Max on our own. Looking back, I see that I always thought about "the NICU team" or "the HSC team". Going from a team sport to an individual event was a little daunting. After meeting with our pediatrician yesterday and the visit by the county early intervention staff today, we're starting to see the new team assemble.

When thinking about where to live, we never considered the county's support services to families of infants with special needs. Arlington seems to have a pretty good program although, unlike similar programs in Maryland or DC, the services aren't guaranteed to be free of charge. There's an interesting research paper here, given that the overwhelming majority of families who need these services don't choose their location based on the price or quality of the services.

The county sent a specialist case manager and an occupational therapist from a third-party service provider. Max put on a major charm offensive for them. The occupation therapist, J., told us that, based on reading Max's chart, she expected a kid with many more problems and a grimmer outlook than Max presents in the flesh. I asked J. what the major pitfalls are for us down the road. Interestingly she skipped right over medical mistakes, infections and so on and identified "parental stress" and "aversion conditioning" as the two biggest threats. The first I can understand. The second is more interesting. Both children and parents can begin to associate feeding, therapy, and any changes to their routine as painful. Children can develop oral aversions as well as aversions to physical exertion more generally. Parents can be overcome with inertia and reluctant to try new things.

J., like lots of other medical professionals we've worked with, focused on lots of positive signs she sees in Max. However, she was also quite blunt and forthright about Max's problems and didn't hide behind jargon to camouflage bad news. In effect, she told us that we've bought a house in the nicest neighborhood in Philadelphia. I've always liked Philadelphia.

Max plays with his feet

2009-04-28T17:31:00.003-04:00

He has horses on his feet
Originally uploaded by andreas.lehnert

Our friend D ("the baby whisperer") got Max socks with bells and pictures of horses on them. We put them on Max this evening for the first time. He's a boy who has always been interested in his feet. With the addition of wild animals, Max now finds his feet irresistible toys. In this picture, he is holding his legs up, something that requires at least some muscle tone in the trunk. It's a positive development.

We've survived 4-1/2 days!

2009-04-27T19:38:00.003-04:00

What's it like running a hospital out of our home? A week ago we would have been paralyzed by the complexity of the equipment, feeding schedule and so on. But we're getting the hang of it.

It certainly feels as if a lot more time has passed since we brought Max home. But it seems that time has not actually slowed down--we're just savoring each second individually, without the soothing balm of routine to make time go by more quickly. Each moment brings a new, and often exciting, incident or challenge.

We are, however, slowly figuring out how everything works. We're making fewer mistakes with the complicated regimen they sent us home with. I'm collecting pictures of the various pieces of technology that we've now mastered so I can put together a guide to the hospital at home.

A couple of nights ago, Max ripped out his ng tube while I was lying next to his crib. I didn't notice for a while (Max actually seemed more comfortable and his monitor didn't go off). But I did eventually catch it, and Carolyn and I successfully reinserted the tube in the deep pre-dawn darkness. Max seemed to take it all in stride.

Carolyn and I took Max to the pediatrician for his first appointment this morning. We brought the pump in its cunning little backpack so he could get a scheduled feed. A little girl in the waiting room commented that "that baby has a band-aid on his nose". He does indeed, and will for the foreseeable future. It was actually a little shocking to see babies without feeding tubes, oxygen and monitors. This was our first public outing with Max; the public reaction wasn't anything I had thought about. There's a breakfast place in the ground floor of the pediatrician's. Carolyn and I dropped by with Max: we had the french toasts, Max had a smiling contest with the waitresses.

Stethoscopes have an "off" switch

2009-04-24T21:27:00.005-04:00

Our first full day home with Max went by in kind of a blur. The simple fact of having him home is still a constant surprise and novelty. We were nearly overwhelmed at first by the complicated medication and feeding schedule that the medical team devised to manage his reflux. Max's reflux has really flared up since we got home. At one point, we became convinced that his feeding tube was in the wrong place because when we puffed air through it, we couldn't hear the tell-tale "woosh" through a stethoscope. We stopped his feeds and meds and waited for the home-care expert nurse to come over. She showed us, among many other useful and interesting things, that stethoscopes have an "off" setting. When used properly, we found that, indeed, Max's tube was in the right place.

When I looked at the calendar today I realized Max and Ada were born exactly six months ago. They were born on one of the last warm days of the fall; Max came home on the first warm day of the spring.

We're home!

2009-04-23T17:10:00.004-04:00

We made it home! We found Max at HSC this morning ready to leave:

As I was changing Max I noticed something he wouldn't be needing:

Carolyn and I practiced placing a feeding tube up a baby's nose on a practice doll. Then I did it for real. It was certainly interesting. I put the new feeding tube in the other nostril. Carolyn carefully wiped away the accumulated adhesive from the tape that had held the previous one in place:

And then it was time to leave. (Actually, I'm skipping over a lot of steps, but the HSC eventually let us go.) We loaded Max into the car in the HSC parking garage:

Max was very interested in the new sights and sounds during his drive home:

And then we were home:

The excitement builds, and spreads

2009-04-21T20:59:00.003-04:00

I've noticed from watching Felix that when children experience strong emotions, including generally positive emotions like happiness or surprise, they often break into tears. My theory is that children lack perspective: their first time down a slide alone might very well be the actual most exciting thing they've done in their whole lives. I think I can relate. Max's imminent arrival--this Thursday!--has set my mind racing through all the unknowns facing us, and, seriously, how can I have the proper perspective?

What kind of feeding technology will he be on? (We only know that they've ordered a different kind of pump than the one we used two nights ago at HSC. You know, the one that required ticklish maintenance every 70 minutes, all night long.) How will we do feeding Max by mouth? How will we monitor his hydrocephalus? His wedge doesn't really fit in his crib--what if we put it in a pack-and-play on the floor? How can we elevate one end of his crib to simulate his hospital bed? And on and on and on.

Felix is obviously picking up on the waves of nervous energy that Carolyn and I are giving off. Today he complained about phantom pains in his legs, feet, and, um, "bum". Could this be a dire childhood illness? When he forgets about it, he walks just fine. And then there are the sudden crying fits. I know how he feels. Tonight, as his bedtime book, he selected I'm a Big Brother.

No doubt if our cat was still alive, she would be acting out too. It's just as well that we don't have to contend with turds left on our pillows on top of everything else.

But of course, Max is the one who has done all of the work so far. I think back to Max's first few days, and his many subsequent brushes with disaster over the past six months. From that perspective, his move home might be just a small step.

Max in his second day of life:

Our night in the family apartment

2009-04-20T11:15:00.002-04:00

The family apartment's kitchen
Originally uploaded by andreas.lehnert

Carolyn and I spent the night at one of the "family apartments" inside the HSC. These are fully functional apartments--kitchen pictured here--where families can practice giving all the care that the HSC patients will need inside a hospital, where help is just a shout away.

Last night, Max had his food provided by a hospital pump: The pump delivering milk through his tube had to be replenished every hour and 26 minutes. Although the actual process wasn't difficult, there's something about having one's sleep interrupted at the 70 minute mark that is uniquely disturbing. Thankfully, we'll be taking him home with an arrangement that doesn't need such frequent adjustments. It was kind of fun for a one night. After a week of this, I could see myself making more and more mistakes.

In addition, Max was on a full set of monitors. A friend described the monitors this way: When the alarm sounds your baby is either in serious danger, or he moved slightly in his sleep. Last night, Max's alarms went off fairly frequently--I'm sure he found the familiar tones and beeps soothing. Perhaps in time we too will become inured to them.

But really, the thing that interfered most with our sleep last night was Max himself. He was extremely cute throughout the night. He dropped off to sleep around 8:00 PM (before I got to the hospital in fact) and didn't wake up again until 6:30 AM. He seems to be a very active dreamer and was waving his arms and legs around, mewling and smiling frequently in his sleep. (Babies practice facial expressions in their sleep.)

The family apartment

2009-04-19T20:50:00.003-04:00

This place is nicer than any apartment I've ever lived in. Max is sleeping soundly on his wedge. Carolyn & I are whispering but it struck us that this is the very quietest that Max has had it in his whole life. We're not about to set off a klaxon to test Max's tolerance however.

Spending the night at HSC

2009-04-19T17:56:00.003-04:00

Carolyn and I will spend the night with Max in the family apartment at the HSC. We're excited but also nervous. Tomorrow we will still be excited, hopefully less nervous and probably more sleepy.

Di & Max

2009-04-18T09:59:00.002-04:00

Di & Max
Originally uploaded by andreas.lehnert

Seen here, Max makes a new friend. After a vigorous physical therapy session, Max took a long nap on Diane. At the same time, Carolyn worked to make the arrangements to bring Max home. Inertia alone could keep Max at HSC for another month, but Carolyn is pushing through all the bureaucratic obstacles.

Facing up

2009-04-15T21:45:00.003-04:00

Physical therapist M. has told us several times that if Max's overall tone is set to improve, we will notice improved head control first. Tone spreads from the head down. Max has severe reflux because he has a tone deficit: his brain can't communicate with his stomach and esophagus to tell them to work properly. But the esophagus and throat are far away from the head. We're waiting for Max's head control to improve before we starting hoping for significant improvement in his reflux. Not to mention, of course, that we might then also see some broader improvements. And that's why the physical therapists are so focused on Max's ability to control his head.

Carolyn had a lot of trouble getting to HSC this morning: road closures, accidents and the weather conspired to make the commute even longer than usual. When she arrived, she found the attending, Dr. Y. and physical therapist M. quite worked up. Max had picked up his head and looked up during a PT session. Speech therapist L. was there with her camera and captured a few shots of Max facing up. By extension, Max was also facing out, facing out of the HSC, facing out at his life.

In that vein, moves to get Max out of HSC are accelerating. The current timeline has him home on Thursday, April 23, 2009. The prospect of Max's impending homecoming has us scrambling to prepare for him. Long ago, we set up his room in anticipation of his arrival. Since them, it has gathered dust and suitcases (now once again banished to the attic).

April 23 will be Max's 181st day of life, making him almost exactly half a year old. It is also William Shakespeare's birthday. An auspicious day.

Here is a picture captured by speech therapist L. of Max facing up:

The countdown begins

2009-04-14T23:23:00.003-04:00

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!

2009-04-13T23:00:00.003-04:00

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.