Tag Archives: ericiv

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

September 30, 2004 snowdeal 1 Comment

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 procedere, 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.

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

September 29, 2004 snowdeal Leave a comment

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!

sometimes after adding barley to the milk, micropreemies have a more difficult time drinking their bottle, but eric doesn’t seem to mind at all and drinks it as quickly as ever.

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. micropreemies often will get agitated when they lack the boundaries that were familiar when they were in the womb. he loved it. if we removed the diaper he’d start to fuss, but as soon as draped him in the diaper, he calmed down quickly.

he’s hungry, so he decides to suck on the web diaper that we’ve draped over him

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.

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

September 28, 2004 snowdeal Leave a comment

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.

the exam room is small, but it’s filled with lots of equipment, including a large x-ray machine.

little odin is quickly place on a board that will allow the technical staff to rotate him 180 degrees to get a variety of views of the radioactive barium flowing through his digestive tract during the upper GI test.

eric is strapped to the board to prevent him from falling off during the procedure.

kris conforts eric right before the upper GI exam begins.

during the exam, they carefully rotate him while feeding him radioactive barium to get front and side views of his gastrointestinal tract while he’s feeding.

two techs, jeff and jeff, look at the x-ray movie as the food moves down his esophagus, into his stomach and enters his small intestine.

kris comforts eric after we believe the procedure is finished.

eric’s hungry, since they skipped his 12 a.m. feeding before the procedure, so kris gives him a bottle which he gulps down.

d’oh! right after kris gave eric his bottle we discover that they want to get a few more images to help them clarify an abnormality that they found in the initial test.

jeff looks on as he completes a second set of scans. he’s looking at the narrowing in eric’s esophagus, which – if you look carefully – you can see on the monitor. eventually he determines that the narrowing is simply a “tertiary contraction” which happens when his esophagus contracts in an uncoordinated manner that’s not uncommon in micropreemies and not – thankfully – a physical obstruction caused by abnormal vasculature.

eric’s nurse gave him a “rubber ducky” for doing so well doing the procedure. after we return to the nicu, the duck looks on while eric sleeps since he’s very, very tired from such an exciting adventure.

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 diaphragm. 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 candidate 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 tomorrow 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 tomorrow after we talk with the pediatric surgeons, it’s hard not to feel like the finish line keeps moving farther and farther away.

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the eric update – day 85: a bouncy seat. and an imminent “upper g.i.” test.

September 27, 2004 snowdeal Leave a comment

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.

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

September 26, 2004 snowdeal Leave a comment

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 definitely 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.

eric enjoys the supersized paci while he attempts to open his eyes which are “goopy” from an antibiotic ointment which is applied every 12 hours to prevent infection after his ROP surgery.

it’s nine o’ clock which means that it’s time for the nurse to give him his meds, take some measurements and listen to his stomach and lungs with a stethascope. it’s a moment that captures just how closely they still monitor him and there’s a lot to be noticed in the pictre. the tape measure was used to measure his head circumference, length and belly width ( a bigger belly can be a sign that he’s getting a gut infection ). the red syringes in the upper left corner contain his meds to help control his reflux. the nurse is listening to his stomach to make sure it sounds like he’s digesting his food well. the sensors on his body are monitoring his heartrate, respiration and blood oxygen levels. and kris is keeping the pacifier in his mouth, which not only helps to keep him calm, but also prevents him from refluxing his food.

if you look closely you can see him eyeing his nurse warily.

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.

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

September 25, 2004 snowdeal Leave a comment

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. )

he’s continuing to reflux quite a bit, which means after he feeds he starts to send milk back up his throat and out his nose and mouth. while mild reflux is a relatively benign problem in full term infants ( and adults ), micropreemies can get milk in their lungs which causes pneumonia and the process of refluxing causes them to stop breathing, which is not fun.

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 twitches, 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.

in the above photo, kris unintentionally captures a few of his milk boogers from the reflux. if we leave them in too long, then he gets stuffy and has problems breathing, so we have to constantly use a “bulb syringe” to suck out the milk boogers, which he likes none too much.

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.

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

September 24, 2004 snowdeal Leave a comment

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.

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Tag Archives: ericiv

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

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

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

the eric update – day 85: a bouncy seat. and an imminent “upper g.i.” test.

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

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

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

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