Wednesday, December 30, 2009

Crawling into 2010

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.

Sunday, December 6, 2009

The budding athlete

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:

With 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.

Sunday, November 29, 2009

Medical Roundup

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.

Sunday, November 1, 2009

Max's Halloween

Felix was a dragon; Max was a tiger.

Max's Halloween from Codered Summer on Vimeo.

Sunday, October 25, 2009

Birthday montage

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

Max's First Birthday from Codered Summer on Vimeo.

Saturday, October 24, 2009

Birthday boy

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.

Wednesday, October 14, 2009

Max practices eating

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.

Monday, October 12, 2009

Goodbye to all that

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.

Monday, October 5, 2009

All ears

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.

Thursday, September 24, 2009

Medical round-up

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:

Monday, September 21, 2009

Max dodges another bullet

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!

Monday, September 14, 2009

Bedtime feeding

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!

Sunday, September 13, 2009

The NICU Reunion

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:


Nurse B. and Max met up again yesterday:

NICU Reunion
And now.

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

Out for a stroll with Dr. R.
Feb. 27, 2009

And Max met up with her again yesterday:

NICU Reunion

Monday, September 7, 2009

The haunted mind

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

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.

Saturday, September 5, 2009

Amount PO

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?

Thursday, September 3, 2009

Are these eyes crossed?

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)

Are these eyes crossed?
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.

Wednesday, September 2, 2009

Stealing prunes

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.)

Prune Stealing

Tuesday, September 1, 2009

PO Commando

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.

Saturday, August 29, 2009


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

Tasting from a Spoon from Codered Summer on Vimeo.

Friday, August 28, 2009

PTSD and the NICU

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

Let the Wild Rumpus Begin!

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

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

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

Eating dinner

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

Max and the Red Balloon from Codered Summer on Vimeo.

Wednesday, August 26, 2009

The unexpected connection between hips and lips

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

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

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

Tuesday, August 25, 2009

What happened last night

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

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

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

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

Tube-free morning

Monday, August 24, 2009

No longer a danger to others

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

Pox-free (sort of)

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

Eating a num-num

Saturday, August 22, 2009

Chicken pox and possibly unrelated personality developments

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

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

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

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

Pox, Day 5

Chicken Pox, Day 5

Amount by mouth

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

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

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

Max holds his bottle

Max holds his bottle

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

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

Friday, August 21, 2009

More pox

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

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

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

Thursday, August 20, 2009

Pox Day 2

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

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

Tuesday, August 18, 2009

Attention, Medical Students!

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

Not acne

Can you find the spots?

Monday, August 17, 2009

Max in Pox, Sir

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

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

Max in pox, sir!

Wednesday, August 12, 2009

Endurance tests

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

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

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

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

Max in the exercise saucer from Codered Summer on Vimeo.

Monday, August 10, 2009

Max and the monkey

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

A visit to the neurosurgeon

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

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

Friday, August 7, 2009

Time flies

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

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

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

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

Tuesday, June 30, 2009

Max's latest tricks

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:

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

Here Max is pushing himself up:
Working without a nose tube

And here is a picture of Max collapsed on his face after the exertion.
Working without a nose tube
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.
With lion and a bottle
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:
Sucking 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:
Biting (or gumming)

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:
Grabbing feet
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:
Standing (aided)

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.

Monday, June 29, 2009

A visit to the GI clinic

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."

Standing (aided)

(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:

Biting (or gumming)

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

Friday, June 26, 2009


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:

Ready for bed

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:

Sucking thumb

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

A big bottle

(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:

Smiling at Carolyn

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

Max and Cj's finger (closeup)

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

Baby bjorn

Sunday, June 14, 2009

Feeding baby birds

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?

Friday, June 12, 2009

Progress bar

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

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

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

Feeding 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.

Tuesday, June 9, 2009

Television and children

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

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.

Monday, June 8, 2009

Visit to the phrenologist

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.

Sunday, June 7, 2009

Max is better

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.