the eric update - day 88: colorful crib! weight gain (finally)! gut tube?@!

since it looks like we may or may not be having an extended stay at the new nicu, we decided to spruce up eric's crib with artwork made by eric's cousinds that we brought over from the old nicu. the artwork is color coordinated with his mobile, no?

other than sprucing up his crib, it was a relatively quiet day in a good way. after days of not gaining much weight, he weighed in a 4 pounds 14 ounces or 2215 grams, which means if he keeps the reflux under control he should hit the five pound mark quite soon. perhaps on his lucky 13 week birthday? also, he's been displaying signs of being very hungry after his feedings, so after some advocacy on my part, they increased his feedings from 40 cc's to 45, which amounts to about a whole extra bottle of milk over the course of a day. it's a tough balance, i think his doctors are wary of giving him too much milk at once since he's refluxes so quickly, but it's also not fun to watch him suck on his fist and smack his lips after each meal. everyone will be watching him to see if the increase in volume, exacerbates the effects of the reflux. indeed, after two and a half days of no alarms, he had an apnic episode in the evening, although it's impossible to know to what degree the increase in feeding volume contributed to the alarm, if at all.

it's still not clear if eric's neonatologists believe that the hiatal hernia and nissen surgeries are inevitable. one can learn a lot by learning to decipher eric's neonatologists' medical notes and amongst the scribblings we can see that they are discussing the results at a radiological conference, which i take to mean that they're gathering opinions. if you look at the notes you'll see that they specifically refer to a GT/nissen procedure where the GT refers to a "gut tube". with a gut tube you feed your child by popping off a cap on their abdomen and pouring milk directly in their stomach. as with the nissen surgery, it's been my understanding that GTs were done as a last resort on kids with very obvious esophogeal damage to give the damaged tissue time to heal, but eric doesn't display any signs of obvious damage. one nurse commented that they the GT was actually necessary to help the esophagus heal from the nissen surgery itself and not preexisting damage from reflux.

if they do decide that he needs the procudere, i think we'll be getting at least a second opinion, because it sure seems like quite an invasive procedure given that eric seems to be doing so well with the barley feeds. but then again, perhaps they're seeing something ominous in the upper GI scans? if so, they're not saying anything directly to us. i'll wait a day, or two or three before starting to press them to clarify what's going on behind the scenes.

the eric update - day 87: waiting. a fistful of paci. barley feeds. mobile.

after eric's neonatologist's consulted with pediatric surgeons this morning about his hiatal hernia and possible nissen surgeries, they've decided to hold off making any decisions to see if non-surgical management will help improve the reflux. while that's great news, they've also decided to delay his inguinal hernia surgery so they can do it when and if they decide non-surgical methods are no lnoger working to control the reflux at which point they'll do everything at once. since his neonatologist last night said that they had already had a hunch that he'd need the surgeries eventually, but that the pediatric surgeons didn't like to do them before a baby weights 2,500 grams, i'm guessing that from their perspective we're playing a waiting game - they wait for him to hit 2,500 grams, while letting us try less invasive treatments in hopes that something might work.

to that end, they finally gave orders to start supplementing his feedings with barley which helps to thicken them and will hopefully help to keep the food in his stomach where it belongs. remarkably, after we added the barley, he almost completely stopped spitting up his food! even more importantly his blood oxygen levels remained stable after eating, which means there's less reflux in his esophagus stimulating the nerves that initiate the cascade of events that lead to an apnea. he's still showing signs of reflux, such as pursing his lips and making chewing motions with his mouth, but he responded quite well to the barley and appears to be much more stable; in fact, he hasn't had any alarms in over 24 hours! whooohoo!

do the remarkable results of adding a little barley to his feedings mean that he won't need surgery? it might and it might not, depending on the results of additional upper GI series ( we don't have any sceduled yet ). it's possible that the barley is helping to make eric more stable, while masking esophageal damage that will gradually result in feeding problems, which we certainly would like to avoid. but the barley might, just possibly might, help to stabilize eric enough to allow us to bring him home while he gains weight and we to see if he really does need surgery or if things will gradually get better as eric matures. eric's neonatologist said that he would let him come home with an unrepaired inguinal hernia, as long as everything else was under control. i'm guessing that if we see two or three days of no alarms and no significant "desats" after feeding, we might be talking about going home sooner rather than later - not that we'll ever tell him that, mind you.

so, while we wait, wondering if little odin will be coming home in one week or six, life in the nicu hums along; today, eric actively grasped and held his paci for the first time ( motor coordination! ); we gave him a bath and got a great tip from a nurse about how draping eric in a wet cloth diaper will give him a "bundled" feeling, making baths a lot less stressful ( it worked really well ). and we brought in a mobile that will supposedly encourage his development and vision. i don't know if the claims are about stimulating development are true, but it seems like a good idea to have something familiar around when we finally get to go home.

the eric update - day 86: photo op! unexpected rop exam. upper GI. more surgery? longer stay?

one of eric's neonatologists from his old nicu stopped by today. she does research at the new nicu and after talking for a bit about how he was doing, she asked us if we'd allow her to have some pictures taken for a publication that they are putting together about the ROP research that she's doing with eric's opthamologist, dr. droste. of course, we were happy to have them take some pictures of little odin, on the condition that i could take a picture of them taking a picture of him.

the man in the photos is dr. droste, who performed eric's rop surgery and the woman in the lab coat is dr. poortenga. we like her a lot, since her quick actions helped to unstrangulate his strangulated hernia on day 35. had she not been successful eric would have been transferred to the new nicu much sooner for emergency surgery. she's very nice and is one one of the many people that we were not able to get a picture with before leaving the old nicu, due to the quickness of the transfer - so it's nice turn of events to finally get the picture afterall.

during the photo-op, dr. droste took a moment to perform a follow up exam for his recent rop surgery. the good doctor still thinks eric looks "good", but believes he has a 50% chance of needing further surgeries ( which is a higher estimate that he provided immediately after the surgery). he also clarified that kids with disease similar to eric have a 20% chance of developing more severe ROP, an 80% chance of ending up with 20/100 vision or better and a 60% chance of having 20/50 eyesight or better. so, there's a good chance that he'll need some sort of eyeglasses in the future, but that was probably going to happen anyway, since nearsightedness runs in the family.



after the photo-op, we went on what eric's nurse called a "field trip" for his upper GI exam. and what a field trip is was! i think i might have left the mistaken impression that we were overly concerned about the radioactivity of the barium during the exam. i guess it was poor wording on my part, since kris and i have both had upper GIs and know that while it's not a risky exam, we know that it's not exactly a walk in the park either and all things being equal we'd have preferred to not have to have him wheeled to a far corner of a hospital, strapped to a board and rotated around while drinking a barium milkshake. but that's just us being worry wart parents, because eric simply couldn't have cared less. he took it all in stride and, amazingly, didn't cry once. he just looked around and calmly took it all in. i guess in the world of a micropreemie, it's just another day in the nicu.

unfortunately, they discovered that eric is refluxing almost as soon the milk hits his stomach, which is not good. the preliminary assessment is that he has an undiagnosed hiatal hernia, which happens when the stomach prolapses through the diaphram. although it's a relatively small hernia, it could still be the cause of why eric is refluxing so quickly. we don't know much at this point and will have to wait until tommorrow when the pediatric surgeons get a chance to review the results of the upper GI. why would the pediatric surgeons be reviewing the upper GI? because the neonatologist's hunch is that eric should have the hiatal hernia repaired and is also a canditate for a surgical procedure known as "nissen fundoplication" which strengthens the stomach valve. it's hard to imagine that a little over a week ago, we were close to going home with eric and now it appears that we'll need to make some quick decisions about an ever expanding list of surgical options.

while it seems reasonable to contemplate repairing the hiatal hernia, we were a bit surprised to hear that they also thought he might benefit from the nissen procedure, since my understanding is that it's done as a last resort. perhaps they'd just like to do it if they already have to have him in the operating room. in any case, we'll know more tommorrow after talking with the surgeons.

unfortunately, if he does need surgery, unlike the inguinal hernia surgery, they don't often perform it on babies that weigh less than 2,500 grams, which means - under optimal conditions, we could be faced with another 10-20 days in the nicu, just waiting for him to gain enough weight for the surgery. and if he starts having problems gaining weight due to the reflux, then it could even longer.

temporarily abandoning the rollercoaster cliche' in favor of the marathon metaphor - while things might look quite a bit different tommorrow after we talk with the pediatric surgeons, it's hard not to feel like the finish line keeps moving farther and farther away.

the eric update - day 85: a bouncy seat. and an imminent "upper g.i." test.

eric's caregivers thought that we should bring in either a car seat or a "bouncy" seat to see if his reflux issues improved if he was sitting at in incline with gravity helping to keep the food down. so we brought in our new "eddie bauer soothing comfort bouncer" that we received for our baby shower. while we've been trying to keep him in an upright position after all of his feeds, for whatever reason he seemed to really like the bouncy seat and slept quite soundly while refluxing very little of his food. it worked so well that we decided to put it in his bassinet, so he can sleep in it for longer periods of time.

while he seems to be generally improving, he's still having enough problems related to his reflux that they wouldn't release him for fear that he'd aspirate the food into his lungs. even though he's having fewer apnic events, he's still somewhat frequently "desatting" ( lowering his blood oxygen saturation levels ) to levels low enough to make him turn a blueish/gray color. so, they told us today that they'd like to get a much more quantitative look at how he's refluxing, which requires an "upper g.i." ( upper gastrointestinal ) test. during the test they'll give him small volumes of milk laced with radioactive barium, which will allow them to visualize the inner workings of his feedings with a special machine that picks up the radioactive particles emitted by the "hot" liquid.

while it's important for them to know how much and how quickly he's refluxing his meals and it's a relatively risk-free, routine procedure, i think it's normal for parents to feel a little sorry that their child has to have radioactive fluid dumped down their gullet before they even reach their "official" due date. the test will be performed sometime tommorrow, although we won't know exactly what time until they do the schedules are scheduled first thing in the morning.

update: he'll be having the upper g.i. test at about 2:15 p.m. est. on tuesday.

the eric update - day 84: more recovery. impending hernia surgery? 12 week birthday!

eric seems to be slowly getting better, due in part to his new meds to control his reflux. he's almost completely stopped having milk coming out of his nose and mouth, although we can still see him pursing his lips and making a motion with his mouth that looks like he's chewing; both actions are signs that he still has fluid coming up, but it's a lot less forceful. thankfully, the number of alarms have also gone down and he's gone from having 10 to 20 apnea alarms a day to just one!

he's still showing signs of being overstimulated in his new environment. we expect him to return to "normal" in a day or two or three, but at the moment he's still showing signs of being stressed. if you look close, you can see that his cheek looks "mottled" which is a subtle sign that he's getting too much sensory stimulation.

so, even though everyone is watching eric closely for signs of an infection, it looks like things are returning to normal and with a little luck, he'll be back to his old self, just in time for his hernia surgery. we've been told that he'll definately be having the surgery this week, but we won't know on which day he'll being having the surgery until the schedule is prepared on the prior day. in a way, i'm glad that we've had the chance to get a quick peek into how he recovers from surgery; while the hernia surgery is generally considered to be routine and relatively painless on the wee ones, it's usually more disruptive than rop surgery, as he'll be getting intubated and during the surgery, doctors will need to make two small incisions, which probably won't feel too good after he wakes up.

with all the excitement, it's almost easy to forget that it's eric's 12 week or third lunar birthday! it's hard to believe how much has happened in the past 28 days and with any luck, we won't have to celebrate too many more of these weekly birthdays in the nicu.

the eric update - day 83: on reglan and risks, part two. reserve capacity gone?

the big news today was that thanks to the less restrictive visiting policy at the new nicu, eric got a special visit from his grandparents, which meant that eric met eric while eric watched! fun! he also got to see grandma snowdeal which was equally fun. the new nicu allows anyone to come and see eric as long as we're there, so it's nice to get a chance to show him off, although we would begin to suspect later in the day that all the new voices ( he had more visitors than just grandma and grandpa ) might be stressing him and contributing to his alarms. ( for family and friends who are reading this who might be or have been visitors, don't go thinking that we're saying we don't want visitors - it's just that we might need to be more sensitive to talking quietly around him. or perhaps not talking at all, if he's really stressing out. )

eric continued to reflux throughout the day he still hadn't been put on reglan when we arrived. so, we took time during the day to talk to yet another neonatologist about the risks associated with reglan. it's all the more frustrating that this is one of those areas where, if you ask 12 different people a question as simple as "how common are the side effects from reglan" and, you'll get 12 different answers ranging from "we haven't seen anything in 30 years of practicing" to "it's a drug, it has risks and we see about 5% of kids who have side effects." to "well, occasionally i'll see twiches, but i don't like to use it because it's not really effective."

but eventually, we had to do something to help him keep his food down; he lost a little weight over the night, presumably due to the fact that he's losing so much food out of his mouth and nose. so, in the evening, we started him on a drug that can cause blood problems, muscle spasms and tics in children and is the subject of lawsuits due to the fact that it's known to cause a neurological condition known as tardive dyskinesia. most of the people we have talked to said that they thought that there was no evidence that any of the known possible severe side effects were an issue if the drug was dosed correctly on a short course of treatment and if it was removed at the first signs of any adverse events. i guess we can only hope that they're right.

even though three days have passed since the surgery, he's still doing things that he never used to do and it's hard to tease apart the root causes. in addition to the new reflux problems, he's still having many more apneas ( forgetting to breath ) that he has in the past ( remember, he went quite some time without having any alarms at all ). yesterday he had over ten events, some of which he had a difficult time pulling out of without the use of pure oxygen blown near his nose and mouth. eric is also having problems coordinating his suck-swallow-breath sequence while taking the bottle. he seems to remember the suck and swallow parts, but forgets to breath, which is contributing to the alarms.

when his evening nurse came on shift, she came over and started talking to me and i saw her make a face as he started to alarm. she came back a few minutes later and he started to alarm again when she started to talk. a lightbulb went off and she said that she thought he was still overstimulated from the move and the surgery and all the new voices and sounds. micropreemies normally have very little "reserve capacity" to keep up with the rigors of breathing and feeding and stressors can often wipe out what little reserves they already have. sometimes, soon after he was born, just using two of his senses ( e.g. looking at you while listening to you talk ) would wipe out his reserves and he'd start alarming. we hadn't thought about the issue in awhile because as he got older it seemed to be less nd less of an issue.

so we made an extra efforts to "stim" him less in evening by moving him less, turning the lights down lower than normal and talking in even more hushed whispers than typical. thankfully, the efforts seemed to work and his number of alarms seemed to diminish. in retrospect, it's fairly obvious that his reserve capacity has been completely depleted due all the new alarm bells and nurses voices and babies crying, in addition to the lingering effects from the surgery. thanks to an observant nurse, we now have a working theory that can give us something constructive to do - do things to keep his stimulation levels to a minimum - rather than sitting around, getting anxious and overstimulated ourselves, wondering if an impending infection is the cause of all his alarms.

the eric update - day 82: on reflux, reglan and risks.

after a long day of continuing to put the puzzling puzzle pieces together, he seems to be slowly getting better after the surgery. he's stopped puking and is taking his bottles a bit better, although he's "refluxing" his food more than we're comfortable with, which means that it might be getting close to deciding to put him on drugs to control the condition which can have nasty side effects.

it's a difficult decision, but each time he refluxes, he's at risk for dumping milk into his lungs which can lead to pneumonia. and that's really the last thing we need right now. he's also in obvious discomfort and not really sleeping after his feedings. whereas in the past he might reflux a little bit of food out his nose and mouth, we now have to be at his bed constantly at the ready with a burp cloth because at any moment he could be laying in a pool of milk. obviously this is not doing our sleep schedule any favors.

we talked with our nurse tonight who has "parent" nicu experience, as she has a child with a terminal form of dwarfism who isn't expected to live much longer; she was very sympathetic and has given us the most helpful advice that we've heard all day long. every baby will recover from surgery in their own way and since he hasn't had surgery, we can't expect to know how he's going to recover, even if he's done so well in so many different areas. she said that her own daughter took a month took a month to recover from the supposedly routine ROP surgery. she very much knows the risks associated with reglan because her daughter is taking it and she's administered it as a nurse for years. but at a certain point, the risks of reflux outweight those of the treatment. such are the decisions that you have to make as a micropreemie parent - allow your child to remain at risk for getting pneumonia ( and worse ) or put him on meds that could affect his nervous system. difficult decision, no?

i should probably say that we talked with the doctors at both our new and old nicus and none of them preferred any of the common alternatives to reglan and zantac for a variety of reasons, some of which seemed reasonable and some of which just seemed lazy.

so after two days of trying every positioning trick in the book, the nurse said she was going to try a few more ideas ( including putting the milk in cereal ) to control the reflux; as we left, sleepy and frustrated, i gave her permission to start the drugs in the morning if nothing else was working.

the eric update - day 81: puzzling puzzle pieces

it's over 24 hours after ROP surgery and he's looking better as his eye swelling has gone down. but whether or not he's actually feeling better is something else entirely. he's not eating well and he's not keeping down what he does eat. he could just be feeling crappy after his surgery or something worse could be going on. we'll hopefully know more over the next 48 hours.

he, himself once told us that practicing neonatology is like putting together a puzzle that has pieces that can be put together in several different ways - all of which might look right, but only one of which feels right. right now, we're having a tough time finding the way to put the pieces together in a way that looks and feels right, while simultaneously dealing with his new staff who don't have the benefit of having seen him every single day for the past 11 weeks.

he's continued his weight gains, after putting on 2 ounces a few days ago. he's gained over 100 grams since his surgery alone and is now tipping the scales at a whopping 2180 grams or 4 pounds 13 ounces. as i've said before rapid weight gain is something you don't often want to see in micropreemies. his white blood count differentials are different than we're used to seeing at saint mary's ( slightly higher white blood count, and a slight increase in his bands ), but not enought to raise any immediate red flags. after a few days of having his plummeting platelets start to rise back to safe levels, they're dropping again for no apparent reason. he's starting to throw a few apneas after weeks of nary an alarm.

and perhaps most disturbingly, after weeks of being a great feeder, he's having problems taking a bottle. everyone expected eric to be back on full bottle feeds at this point, but he's still being fed via an intravenous line and having a difficult time drinking even 20 cc's of milk. and even if he does drink from the bottle, he'll eventually puke it back up. mind you, it's not the "normal" micropreemie refluxing that we've seen from time to time, but actual somewhat forceful puking.

every single one of the puzzle pieces can be used to put together a picture that looks benign and his new caregivers aren't particularly concerned about his overall health. his weight gain can simply be seen as a few days of gains on the high end of what they'd like to see. all of the changes in his lab results could simply be due to the fact that they're being done in a different lab. he could still be tired from the surgery, and forgetting to breath a few times is not too unusual. and maybe, just maybe, he really does just have an upset stomach for no reason other than the fact that he feels like crap after surgery.

but we've learned to not take one single thing for granted and we'll be watching him quite closely over the next few days.

the eric update - day 80: ROP surgery

as well as anyone can tell, eric made it through the ROP surgery relatively well. he had a few deep, apneas which is a known side effect of the drugs given to him to induce conscious sedation. they warned us ahead of time, but you never get used to seeing your son turn a deep color blue as you dig your fingers into wall while they seconds tick by. i'd like to say that he'll never have to have ROP surgery again and that he'll forever escape any permanent damage, but we won't have any good answers those questions for about a week.

right before the procedure started they kicked me out, but much to my surprise, the doctor called me back in before he was finished so i could watch the final "burns". he told me several times that he had never, ever invited anyone in to watch him work so i think it was quite a privilege. i didn't get any pictures because i had to wear "laser goggles", but it was fascinating to watch him work. years ago i used to do delicate surgical work on fruit fry larvae ( maggots!) under a microscope, so i have an appreciation for how tight the "tolerances" can be and i was grateful that dr. droste broke his personal rule and allowed me to watch him work.

the doctor had to make about 1,500 "burns" in each eye, but he admonished me to not focus ( no pun intended ) on the absolute number of burns, but rather to note the overall "take rate" which indicates how many of the burns were effective. he likes to have a take rate above 90% and unfortunately, he said that eric was more "challenging" than he had anticipated and thought that he had a take rate closer to 80%. the lower take rate was due to the fact that eric's lenses are cloudy because of a normal developmental process that should resolve itself in a few weeks; the cloudiness makes it difficult for the laser to make effective burns. he was able to get the take rate that he got only after turning up the power of the laser, but he can only turn the power up so far before risking collateral retinal damage.

he noted that the disease had progressed since even yesterday and the plus disease ( the really dangerous part ) was a little more moderate that he liked to see and that there was still a 30% chance that he'd need additional surgery. but he didn't think eric would have any problems recovering quickly and said the he could have the hernia surgery tommorrow for all he cared ( each time he talks with us, he changes his story about how long it'll take to recover, so i'm guessing he's doing his version of managing our expectations ). so it looks like we'll be moving quickly on to learning all about hernia surgery and back on schedule for a release.

many, many thanks to everyone who showed their support in whatever way made sense to them. rop surgery is relatively routine as far as nicu surgeries go, but new intravenous lines, dilation drops, "conscious sedation" drugs and high-powered lasers all provide many opportunities for things to go wrong. certainly versed is nothing to fool around with and having used ketamine in the past to put rats under before i removed their hearts ( don't ask ) i know how, er, challenging it can be to dose correctly. small changes in body fat and metabolism can radically alter how long it lasts and we'd often have rats waking up in the middle of the operation. in fact, the doctor implied how difficult it is to dose accurately by stating that he gets done when the kids starts to move. in any case, it means a lot for us to see so many people in his cheering section.

( i'm not sure how many people who visit here don't go to the see flickr photos, so i'll mention that i often post more pictures over there than you see here. for more rop surgery photos, just follow this link. )

the eric update - day 79: ROP, apparently very, very real.

due to the facts that the new nicu is a little cooler than the old one and eric doesn't have that much baby fat, little odin needs a lot of help keeping warm, so we decided to bring in a blanket that he received as a baby shower gift. it's quite big, but it does a great job of keeping his temperature at acceptable levels. but of course, how well he maintained his temperature was the least of our concerns today.

right before his ROP assessment, kris talked to him and explained what was about to happen.

it's hard to tell in the photo, but the opthamologist had called ahead and they've put drops in his eyes which dilate his pupils and make him very sensitive to light. defying expectations, he didn't seem too bothered by the drops.

soon after his quality time with mama - his opthamologist, dr. droste, examined his eyes by placing a magnifying glass over each eye and looking into them. although we held out a small amount of hope that his condition was apparent, but not real, the good doctor concluded after a few minutes that the disease was progressing quite quickly and he'd need surgery soon to prevent complications such as blindness. eric now has stage 3 ROP with plus disease in all "twelve hours" of zone 2 in both eyes. my understanding is that the severity of the "plus disease" is necessitating the fast action. plain vanilla stage 3 ROP doesn't always require immediate surgery, but when the blood vessels become engorged or abnormally dilatated it's best to act quickly to prevent permanent damage.

tommorrow, the doctor will put a laser on his head and tap a button on the floor which will ablate ( or in opthamologist lingo, "burn" ) over 1,200 overgrown and abnormally tortuous blood vessels in each of his retinas. amazingly, the whole process is expected to take about an hour. despite the advanced stage of the disease, the doctor thought that eric had a good chance of escaping any permanent damage.

in an oddly calming tone, he said that they needed to do the surgery soon because even in just a few days they'd be "playing catch up", which is certainly not something you want to be doing when the stakes are eyesight. it's interesting to note that stevie wonder was born premature and went blind from the same disease, but much progress has been made in how to treat the disease since stevie lost his sight.

the good news is that they caught the condition so quickly. although his opthamologist said he had seen similar cases where the disease progressed so quickly, he professed that, "it didn't happen very often." and the really good news is that there must have been a miscommunication the other day because he expects eric to recover quickly and the ROP surgery shouldn't significantly delay his release date! there's a good chance that he'll need additional surgeries, but he doesn't need to stay in the hospital for monitoring.

if everything goes as planned, after a few days of recovery from the eye surgery, they are going to take advantage of the fact that he's already where he needs to be and schedule surgery for his hernia. hernia surgery is relatively routine ( although i know one reader in particular who could speak at length at how things can get un-routine pretty quickly ) and it also is not expected to significantly delay his release. so, if we can make it though a surgery or two unscathed, we'll be back on track for an early release, if not quite as early as we originally planned.

if you're so inclined, think good thoughts or say a prayer for us around wednesday at 4 p.m. (eastern time, u.s.a.), as we hope that dr. droste hasn't decided to have one too many cups of coffee.

the eric update - day 78: saying goodbye. and hello. postcards?

since i have absolutely no free time, i'm going to try something new and only put a placeholder entry here. perhaps i'll get a chance to put a more detialed account here later. or perhaps not. but for now, i'm just going to give the bullet points there are more important things to attend to.

i apologize to everyone who called yesterday who didn't get a call back. obviously, cell phone time is short and i'm basically in "triage" mode and only returning emergency calls. after a whole bunch of voicemails it became apparent that there was some confusion about eric's eye surgery. he was being transferred today ( monday ) and will have an assessment on tuesday. if he moves from being "prethreshold" to "threshold" then he'll need surgery within 72 hours. the quick move was made because the expectation is that he'll move quickly into threshold land and everyone wants to be prepared for that event. we don't know exactly when he'll have the surgery in the event that it's required and i won't have that answer until later tommorrow.

the new nicu is quite different from the old in many, many ways. while "saints" was small, at 15 beds, little odin's new home is enormous, with over 100 beds. it also gets a lot of sick babies that are transferred from many different places so it has a much different feel. it's odd to be thrust into the new environment, trying to adjust quickly to the new rules, while walking around and seeing so many babies with shaved heads and drainage bags, presumably alleviating pressure after brain surgery. the nicu is cooler, literally and figuratively and is much more antiseptically clinical. in a wierd way, it also feels like we've transferred from the 'jewel in the rough', small, personal liberal arts school to the large, top tier, big 10 school. the veneer looks more impressive, but it also seems like it could be quite easy to get lost in the shuffle. time will tell.

uh. so, it looks like i'm incapable of writing a 'placeholder' entry.

many people have asked me about where they can send postcards. it seems that little odin's quick transfer has revealed all the procrastinators in the crowd :-) for now, if you've sent a card that's already in the mail, i'm sure the staff at saint mary's will keep it until i can find time to come and pick it up ( in fact, i think they were happy to hear that i'd be back to pick up postcards which would give them an opportunity to hear about eric's progress ). i don't know the new nicu's policy , so i can't say whether or not people will be able to send stuff there ( i'll find out more today or tommorrow ). i'm not ready to post my home address on the internet ( i'm not really sure why, since it's quite easy to sleuth it on the the internet. ), but i'll probably come up with a solution sooner rather than later. as always, thanks so much to everyone who has sent us or plans to send us a card ( or more! ).

the endless kindness of strangers ( and friends and family, of course ) never ceases to amaze me.

oh. i guess i should note that eric is gaining weight so fast that it's almost starting to freak me out. he tipped the scales at at 4 pounds 9 ounces or about 2075 grams. that's right - he gained 2 ounces over the last 24 hours and over 5 ounces in the past 48. while everyone is suitably impressed, it's not good to put that much weight on that quickly, so my guess is that they might reduce the amount of fortifier in his breastmilk soon.

the eric update - day 77: a baby shower. rop, apparent but not real? a metric milestone. 11 weeks!

today, 77 days or 11 weeks after little odin was born, we had our baby shower. thanks to the hard work of kris' sister, gina, and her partner, diane, many people came and had lots of good food to eat. we had a great time and received many, many great gifts, but of course, given the circumstances we had a tough time not dwelling in his eric's impending transfer to the new nicu for eye surgery.

i might have some of the details incorrect because i haven't had a chance to talk at length with eric's opthamologist, but my understanding is that eric is "pre-threshold" and "8 hours" into ROP which is technically stage 3+ and primarily developing in zone 2. if you think of the eye as a dartboard, the optic nerve is the bullseye and is zone 1 and there's a ring around the the optic nerve which is known as zone 2. there are 4 stages of the disease and stages 3+ and 4 can lead to the formation of scar tissue on the retina, vitreous hemorrhage, and retinal detachment. by saying that eric is "8 hours" into stage 3+ disease, his opthamologist is not telling us that he's been at that stage for a third of a day, but rather if he's giving us an indication of hos quickly the disease had progressed. if you were divide the retina into 12 hours, he's telling us that 8 "continuous" hours show signs of being in stage 3+ of the disease. he only needs to show signs of disease in "3 hours" to be considered "prethreshold" in zone 2 ( as the disease progresses, you move from being "prethreshold" to "threshold" which means you need surgery within 72 hours ), so it doesn't appear that they are making a marginal call and transferring him unecessarily.

or does it.

after spending much of the day trying to come to grips with how his disease could have progressed so quickly, eric's neonatologist paid us a special visit late in the evening ( on his time off, no less ). we've come to expect the going to get weird whenever we see him at odd hours ( he's a great guy, but as you can imagine he's A Very Busy Man ) and this visit was no expection.

after stating the appropriate amount of caveats , we found ourself listening to him explain that they could never not do what they were doing because they can't ignore the results of his latest eye exam - but that fact didn't stop him from holding out hope that eric's ROP was not nearly as bad as the evidence would lead his opthamologist to believe. sounding much like a zen master he stated plainly, "you see, it's apparent, but it might not be real." in medicine in general and neonatology specifically, sometimes a test will show something to be very apparent, but all one's instincts tell one that it's really not real, and in this case, his instincts are telling him that eric's ROP might not be real.

normally, ROP progresses relatively slowly and it's fairly unusual to have severe disease appear so quickly when they were monitoring it so closely. in fact, it's so uncommon that he's only seen it a handful of times in his many years of practicing neonatology. and every single time it's happened, the diagnosis was preceeded by a recent blood transfusion, which is exactly what eric received just six days ago. but in his experience, micropreemies that present the disease as eric is presenting who have also received a recent blood transfusion often have the disease disappear or at least significatly regress. his theory is that for whatever reason the blood tranfusion engorges the eye's blood vessels in a way that makes the ROP apparent, but not real. he stated quite frankly that eric's opthamologist would not agree with his theory and that it didn't change the fact that they needed to treat eric as if he were going to need surgery soon, so the discussion has an academic flavor to it. but it's a bit of hope and i guess in a week we'll have the benefit of hindsight to know whether or not his theory is true or if it's just a kooky prognostication by a neonatologist who likes to second guess the opthamologists ( i mean that in the best possible way, if he's reading this :-) ).

amidst everything else, eric continued to do what he's been doing so well on his 11 week birthday - eating and gaining weight. he's still guzzling bottles at breakneck speed and he tipped the scales tonight at exactly 2 kilos or about 4 pounds 6.5 ounces.

we said teary goodbyes to some of the night nurses, as they won't see his again after the transfer tommorrow early in the day. unlike some nicus, eric has had many of the same nurses for his 77 day stay at "saints" and they gave up not getting attached to him a long time ago.

we won't soon forget his nurses and i suspect they won't forget him either.

the eric update - day 76: the curse of the nicu.

a micropreemie mom once told us to never let them know that they'll be going home soon because they'll always find a way to prove you wrong. "don't tell them until they're strapped into the car seat." she said.

"it's the curse of the nicu."

just yesterday, standing next to eric's bed, his neonatologist wanted to remind us just how remarkable eric was doing and said with a beaming glint in eye that he had never, not once in his 27 years of practicing neonatology, released a 24 or 25 weeker before their original due date.

"but eric definately won't be here in two weeks."

none of us could imagine just how true that statement could be and yet still be so wrong.

this morning, after weeks of passing his retinophathy of prematurity tests with flying colors we discovered that the disease has appeared and in progressing much more quickly that is normal. unfortunately, it's progressing so quickly that he will need to be transferred to a specialized facility on monday ( originally they were going to transfer him on sunday, before i doth protest too much since that also happens to be, cruelly enough, the date of our baby shower ) to prepare for eye surgery. he's back on the nasal cannula and supplemental oxygen because it can help slow the progression of the disease before surgery.

while i had expected him to develop some form of the disease since it's so common in micropreemies, nobody had expected it to get this badly this quickly, considering the nicu's otherwise stellar track record of ROP outcomes. you know it's a shock when even the nurses start crying.

perhaps even more devastating than the news of the surgery itself - the eye surgeon told us to not expect him to come home for about 6 more weeks.

veteran nicu parents know that this is a classic example of one of the last exciting twisty turns on the micropreemie rollercoaster, but that doesn't make it any easier when your right in the midst of the ride.

the eric update - day 75: no clarity on the plummeting platelets. expensive babysitters. hearing good!

there's not too much new to report today on the plummeting platelet and elevated bilirubin issues. his direct bilirubin dropped quickly back to its previous mildly elevated levels which is being interpreted to mean that the spike was due to the blood transfusion. so that's good news. however, his platelet count dropped another 10K and his hanging around 60K. the good news is that it's not dropping anymore. the bad news is that it's not increasing and there's no clear evidence yet as to what might have caused the drop. if you squint at the graph of his platelet counts over the past couple of weeks, you can maybe see a decline that's tough to discern through the noise which finally becomes apparent when it drops quickly below 100K. a gradual decline would fit into the theory that posits that the bone marrow was gradually shifting production away from platelets and towards red blood cells before his transfusion to help satisfy the demand for RBCs. thankfully, he's not presenting with any other signs of a viral infection, which you might remember could also be causing the abnormal lab results.

kris and i actually spent very little time in the nicu ( and by very little, i mean less than 5 hours :-) ), which felt quite strange. the nurses have become much more assertive with their recommendations that we take advantage of the world's most expensive babysitters while we still can and finish up all the unfinished business that needs to get done before little odin comes home.

oh. i almost keep forgetting to mention that odin passed his hearing test with flying colors!

the eric update: happy anniversary to us!

nope. i'd have never, ever have guessed that we'd be spending our 6 year wedding anniversary ripping up carpeting and painting the nursery while running back and forth between the nicu for bottle feeds.

while our marriage certificate indicates that we've been married for 6 years, really we've been "together" for 13 years. it just, er, took us awhile to make it official. so if you ever see us in the supermarket and you wonder why we're acting like an old married couple, now you know :-)

the eric update - day 74: still breathing on his own! plummeting platelets. elevated bilirubin. questionable meds?

he's still breathing on his own after 36 hours! after 72 days of various forms of respiratory assistance, it's hard to believe that he may finally be free of supplemental oxygen.

and he's still eating like a champ, taking all his feeds via a bottle and nursing twice a day. while his official minimum feeding requirement is 40 cc's in 30 minutes, he seems to enjoy drinking whatever we give him and then a bit more. during his 9 p.m. feeding he drank 50 cc's in 25 minutes! woohoo! not surprisingly, all the breastmilk is helping him to continue to gain weight and he tipped the scales tonight at 4 pounds 3.7 ounces or 1920 grams.

unfortunately we received the results from two lab test that are a bit of a concern and could potentially delay eric's release from the nicu. first, after two weeks of watching his elevated "direct bilirubin" level closely, it's not only not going lower but it's rising, which is somewhat disconcerting because the predomominant theory being bandied about by his caregivers was that the elevated levels were related to being switched back and forth between IV feeds and breastmilk; according to the theory, after he was on full feeds of breastmilk the levels would gradually decrease, but that's obviously not happening.

secondly, his platelet levels are dropping to dangerously low levels. a normal platelet count might be between 150,000 and 200,000 and his results from this afternoon came back at 70,000. this is such a low level that his neonatologist immediately ordered a new test to rule out a lab error. the second test indicated that his platelet count was 60,000.

the elevated direct bilirubin and decreased platelets are cause for enough concern that he's being put on "increased surveillance" which means they'll run blood tests more frequently ( which also means that he might need another transfusion since they need to draw blood for the tests ).

as always, there are multiple Educated Guesses that could possibly explain the lab results. his increasingly elevated direct bilirubin levels might be due to his latest blood transfusion, since transfused blood cells die more quickly than "regular" blood cells and direct bilirubin can be a by-product of the red blood cell death. his diminished platelets might be related to the fact that his hemoglobin levels were so low before his transfusion. bone marrow is responsible for producing both red blood cells (RBCs) and platelets and it only has so much capacity to produce both entities. before his transfusion, it's possible that his blood marrow kicked the production of RBCs into overdrive and slowed down making platelets. or, more scarily, he might be getting a viral infection, which could decrease his platelet count and increase his bilirubin levels. or he could be having an adverse drug reaction to the reglan and zantac which he had been given to help control his reflux. the neonatologist told us this evening that decreased platelet counts are a known occasionaly adverse effect of both drugs.

so, for the next 72 hours we'll patiently wait for the results of his bloodwork and wait for his caregivers to put together a more coherent picture of what might be going on. interestingly, eric's neonatologist was leaning towards thinking that the increased bilirubin was due to the transfusion and the decreased platelet count was caused by an adverse reaction to the reflux meds. if that's the case, then we are all the more grateful that my sister, candy, quickly alerted us to the fact that both meds were potentially dangerous. a quick follow-up from regular reader and frequent commenter, katra convinced us to immediately request that the meds be discontinued. at the time that we we asked that his meds be discontinued, the neonatologist was gracious and didn't make us feel uncomfortable for expressing our concerns, although he did make a point to say that he didn't think that adverse events were very common. i guess we should be happy that he's not too proud to be admitting just a few days later that the meds might be the cause of the problems.

hopefully we'll have more more definitive answers soon.

the eric update - day 73: no nasal cannula! all bottle feeds! nursing! infant cpr. loads of postcards!

woohoo! in the morning, eric's nurse decided to see how well he'd do without any supplemental oxygen, so she removed his nasal cannula. he did fantastic and spent the entire day without free of any breathing support.

he's breathing on his own and apparently racing for the exit door to the nicu!

an added bonus of being free of the nasal cannula is that he also doesn't have any tape on his face, which means we can got an unobstructed view of face all day long. it's crazy to thing that this is the first time in 73 days that we've seen his entire face for the whole day.

he seemed to do even better off the nasal cannula than on and didn't have a single alarm all day long. he's still desatting and threatens a brady or two during feeding times, which is related to his ongoing reflux issues, but otherwise, he showed no signs of needing any oxygen thoughout the day, which is all the more impressive because he was working extra hard today.

in addition to breathing on his own, eric has been taking all of his feeds by bottle for the past 36 hours. yes, you read that right - no tube feeding! i'm not sure i can find the words to adequately describe just how remarkable it is that he didn't need any supplemental oxygen while taking bottle feeding after botttle feeding, considering all the extra energy that is required to bottle feed versus feeding via a tube. and even better - he's really starting to get the hang of "regular" nursing. i know, it might be too much to absorb all at once, but he's also nursing at least two times a day!

it can sometimes be difficult to understand why micropreemies start on bottles and then transition to nursing, but there really are valid reasons why the staff insist that eric is able get his nutrition from a bottle before attempting to nurse. but even while working to ensure that eric is able to bottle feed, the staff have been working hard with kris and eric find ways to start nursing on a regular basis as he gets stronger. kris has begun to use a nipple shield to great effect. in a week, eric has gone from latching for very short periods of time, to nursing for 20-25 minutes before being given a "comp" bottle to ensure that he's getting enough milk to keep him gaining weight. it's not abnormal for micropreemies to not fully get the hang of nursing before they reach 40 weeks, so it's great news that he's already avidly nursing at 36 weeks. it still takes a lot of energy on his part to nurse, which is why he's limited to doing it twice a day, but i don't see any issues that would prevent him from quickly moving to nursing much more often in the very near future.

since eric is breathing on his own, taking all of his feedings by a bottle ( and nursing ) and maintaining his body temperature, he's very close to meeting all the "exit criteria" for busting out of the nicu! that means we need to make sure we learn infant cpr, since it's not uncommon for micropreemies to stop breathing after they get home.

there were several sets of parents taking the infant cpr class today and they brought a bunch of replacement faces for the infant cpr dolls so that we could remove the face and hand the doll to the next family after we practiced cpr.

i'm not sure why you couldn't just reuse a face after wiping it with an antiseptic wipe, but what do i know.

and yes, the postcards are still coming in! we're still trying to figure out a way to put all the postcards in eric's nursery; we're open to suggestions. maybe tack them all on a corkboard?.

the eric update - day 72: on being the s.p. in the house and feeling guiltish.

today holds the dubious distinction of being eric's first full day as "senior preemie" or "s.p.". the s.p. designation is given to the preemie who has been in the unit for the longest period of time. the previous s.p. held the title for an amazing 30 days. obviously, a long reign as senior preemie means that the baby has been in the nicu for quite a long time.

reaching the s.p. milestone is a time for reflection and it's hard to believe that we've seen about 20 preemies come and go from the nicu, some left "healthy" ( mostly 32+ weekers ), some were transported to other hospitals for surgery and one died ( 24 weeker twin). nicu families will naturally look to the senior preemie and their parents for clues to how they might act and feel when it gets close to their own release date; and while this will probably sound like a pathetic plea for a barrage of sympathetic comments ( it's not, really. honest :-) ), it's hard not to feel something close to guilt when we find other nicu parents asking questions or looking in our direction as the nurses joke with us about eric guzzling his bottles or ripping off his nasal cannula.

it's an odd feeling and not one that i suspect that many can relate to. obviously we are very, very, very(!) happy and grateful for eric's astounding progress, but we can't help shake this guiltish feeling. yesterday, the head nurse came up to us and asked us if we had time to talk with her over the next day or so, but didn't indicate what she wanted to talk about. i suspect that it's this guiltish feeling that made both kris and i suspect she wanted to chastize us for being too obnoxiously exuberant. of course, we're fairly certain that she's probably not going to scold us and wants to talk about something completely unrelated, but i guess it says something that we both had the same initial reaction, even as we tried to laugh off the thought.

i don't write about it very much, but it's increasingly apparent just how differently eric's nicu stay could have been. the clinical courses of the other 24, 25, 26 and even 27 weekers have been very, very different than eric's own. given how difficult our own rollercoaster has been, it's impossible to imagine how the other micropreemie parents are dealing with their own rides and i guess that's probably where the guiltish feeling coming from.

the eric update - day 71: another transfusion. reduced reflux. reglan questions.

pooh decided to put one of the yellow "live strong" wristbands to good use after eric finished getting his latest transfusion. as regular readers are quite aware, we've known for awhile that he's needed a transfusion, so it was nothing suprising and it will go a long ways towards giving eric the energy he needs to bust out of the nicu.

interestingly, they did a special blood test to see specifically how many new red bloods cells he was making and it seemed like he wsa doing a great job creating new ones, but just not making them quite fast enough to keep his hemoglobin levels from slowly dropping.

otherwise, eric had a quiet day. he gained a little weight, but most of that was due to the transfusion and fluid retension. his reflux problems were greatly reduced, presumably due to his new meds, but i've been given some reasonable information that reglan can often some with some nasty side effects. i specifically asked about it today and the nurse, who is very normally very responsive, sort-of dismissed the question and said that it's just part of the normal nicu course of treatment for reflux and they never see any problems. we'll definately be following up a bit more rigorously tommorrow to see what the thinking is, considering that his reflux is fairly mild ( although, it must be stressed that reflux in a micropreemie is nothing to play around with as it can quickly spiral into a host of other issues ).

the eric update - day 71: jumping the shark on the snowdeal show ®

if "the eric update" were a fictional account, you might sit back upon learning that i've been laid off and exclaim, "oh come on! that's a fairly over-the-top plot twist, now don't you think!" and snort in disgust at my fairly obvious attempt to jump the shark on the snowdeal show ®.

but no, this really is the the really, realest, real reality show and friday was my last day of employment at motorola after being handed a pink slip. after six years of surviving thousands and thousands of layoffs, the irony of being shown the door at this particular time in my life is so rich that it almost makes me laugh.

conspiracy theorist might conclude that my getting the pink slip might in some way be related to little odin and my struggle to balance focusing on work with my new role as a full time nicu dad. the truth is that we've known for a long, long time that unemployment was inevitable and the only unknown was exactly when the pink slip would arrive. in fact, not many know that when we moved to michigan from illinois two and half years ago, i had tried to quit because the perpetual job uncertainly was getting to be tiring. of course, it would have been nice to have a few more months of breathing room, but layoffs at big, international organizations are planned well in advance and it just wasn't going to happen.

in some ways, the pink splip comes at a great time. odin's