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:
Thursday, September 24, 2009
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!
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!
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:
Then
Nurse B. and Max met up again yesterday:
And now.
And Max met up with her again yesterday:
Yesterday.
The noise, crowds and confusion of the event clearly confused and disturbed Max. His therapists have noted his tendency to disorganization; indeed, Max is prohibited from watching television or being around electronic toys for precisely this reason. The reunion clearly overstimulated him. He cried more or less constantly except when I was holding him and he was agitated for the rest fo the day and night. Max, it seems, does best in his own house, with his few, but devoted, friends at hand.
Nonetheless, we got to see many of Max's old friends again. Although, as Carolyn said, it did feel like tempting fate, and although we did pay for it later, I am glad we went.
Here is Max with Nurse B. back in early November 2008:
Then
Nurse B. and Max met up again yesterday:
And now.
Dr. R. was the first to supervise Max on a trip to the out-of-doors in the very late winter:
Feb. 27, 2009
Feb. 27, 2009
Yesterday.
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.
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.
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?
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)
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.
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.)
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.
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.
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