Max’s final days at Georgetown University Hospital, flirting with the nurses.
Sunday, March 4, 2012
Saturday, July 3, 2010
Good-bye to the bouncy seat
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:
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:
Thursday, April 22, 2010
One year home
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,
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.
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
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
Wednesday, March 17, 2010
We took out the tube
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)
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".
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".
Friday, March 5, 2010
One year ago
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
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
Sunday, February 14, 2010
Valentine's day, then and now
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.
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.
Tuesday, February 9, 2010
The Great Blizzard of the Year 10
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.
That's a copy of "The Going to Bed Book" cradled in my arm.
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.
Sunday, February 7, 2010
Reflecting on reflux
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.
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.
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.
Saturday, February 6, 2010
Pushing and grabbing
Breakfast zoo
Originally uploaded by andreas.lehnert
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
The bucket game
Originally uploaded by andreas.lehnert
Sunday, January 31, 2010
That underpants look
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.
Wednesday, January 20, 2010
That pirate look
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).
Tuesday, January 19, 2010
A few updates
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.
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
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.
Tuesday, January 5, 2010
Max plays the shell game
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.)
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.
Saturday, January 2, 2010
Climbing
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
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.
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.
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):
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:
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.
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.
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.
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.
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