Tag Archives: nicu

the eric update – day 90: five pounds! infant massage. another bath.

while flickr has been having issues, i’ve been getting behind on posting updates. so for now, i’ll just post the super abridged version and maybe i’ll get around to posting the longer version when time permits. you can see annotated photos from the day here.

  • 5 pounds (2280 grams)! woohoo! he’s as heavy as a bag of sugar! weight gain despite reflux is a good thing.
  • infant massage. we’ve been giving him more massages lately to help keep the gas moving along. infant massage has also been shown to have all sorts of other benefits, so it’s a good thing to do regardless ( indeed, the nurses at the old nicu gave eric regular massages, but they don’t seem to think it’s as important at the new nicu ).
  • yet another bath. you can’t have too many bath pictures can you? no, you can’t, especially when you’re giving a bath to a baby swaddled in cloth diapers. it’s cute. honest


day 90: five pounds!

5 pounds (2280 grams)! woohoo! he’s as heavy as a bag of sugar! weight gain despite reflux is a good thing.

day 90: another bath?!@ I.

hmmmm. can you tell he’s hungry? putting a web cloth diaper on him worked so well, that we decided to go all out and swaddle him completely, only unwrapping the parts that we needed to wash when we needed to. bath times go a lot smoother now.

day 90: another bath?!@ II.

yeah, he’s hungry, but he’s pacified temporarily by the supersized paci. i imagine that he’s looking at me thinking, “i’m going to remember this when i’m 16.”

day 90: another bath?!@ III.

time to be dried off by pops. my hands still look purty large next to his head.

day 90: infant massage. I.

we’ve been giving him more massages lately to help keep the gas moving along. infant massage has also been shown to have all sorts of other benefits, so it’s a good thing to do regardless ( indeed, the nurses at the old nicu gave eric regular massages, but they don’t seem to think it’s as important at the new nicu ).

we’re following the techniques described in Infant Massage: A Handbook for Loving Parents. i’m not an infant massage expert, but it seems like a good book.

day 90: infant massage. II.

little odin loves to have his feet massaged. being in the nicu is tough work and after a long day, he thinks it’s just grand it you spend a little extra time on his feet.

day 90: infant massage. III.

don’t forget to massage the arm and hand! he’s strong and likes to flex his muscles in an effort to impress the nurses.

day 90: infant massage. IV.

this move is called “paddling the waves” or something like that. but really it should be called “letting out the gas”. the rice makes him less gassy than the barley, but since he’s still not supposed to even be born for two more weeks, any solid stuff is rough on his gastrointestinal tract. so we spend extra time getting the gas out.

day 90: infant massage: V.

after the bath and massage, he’s more eager than ever to show us that he doesn’t need any help keeping the supersized paci in his mouth.

day 90: infant massage.  VI.

the final step of a good massage, of course, is getting to sleep in your most comfortable ‘jammies.

the eric update – day 89: a little nissen clarity. goodbye gassy barley, hello rice.

day 89: YAFG

tonight we finally received some clarity from a nurse as to why the neonatologists and surgeons are so seriously considering eric to be a candidate for g-tube and nissen surgery, despite the fact that he seems to have stabilized and isn’t showing any obvious signs of abnormal discomfort during feedings. his upper GI series showed that he he begins to reflux at around 10-15 cc’s ( which isn’t a lot when you consider that his entire feeding is 45 cc’s ) and babies that begin to reflux at such low volumes get immediately put on the short list for being candidates for the surgery, since it’s often their experience that babies who begin to reflux at such low volumes eventually need the surgery and procrastinating just leads to esophageal damage.

so, it looks like we may need to balance the doctor’s recommendations against the growing number of negative opinions we’ve received from parents who have had children that have had the surgery. indeed, our nurse tonight who clarified why he was a candidate told us that she had three (!) children who had the surgery done and she wouldn’t recommend it unless it was absolutely, positively necessary and all other options had been exhausted.

day 89: rice feeding

speaking of exhausing all options, while the barley we’ve been adding to eric’s feedings has been working well to control his reflux by thickening the food and helping to keep it in his stomach, it seems to be giving his “gas”. and when he grunts trying to relieve himself of the gassy feeling, he pushes the milk out of his stomach and through his nose, which is pretty much defeating the purpose. so we decided to replace the barley with pulverized rice on the hopes that it would be a little more gentle on his digestive system. apparently there was some debate amongst the nurses as to whether or not the pulverized rice would simply dissolve in the milk; some of the nurses thought that barley should only be used for breastmilk and rice for formula, but others thought that was nonsense. it’s funny to see how much debate there can be over relatively simple things, little less the much bigger issues. in the end, the rice seemed to stay suspended in the breastmilk just as easily as the barley.

day 89: swirls and curls

i think i’ve mentioned this before, but against the recommendation of the “back to sleep” advocates, we like to put eric on his stomach to sleep because he seems to enjoy it so much. micropreemies are at greater risk for “sudden infant death syndrome” when sleeping on their stomachs but we break the rules as long as we know that someone is always nearby to watch him closely.

when he’s on his stomach, it’s much easier to just what a head of hair he’s developing. it’s a little tough to tell from the picture but he’s got quite a “swirls” coming and maybe a few curls.

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

day 88: colorful crib

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.

day 88: upper GI medical notes

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.

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

day 87:  a fistful of paci

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.

day 87:  barley feeding. I.

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!

day 87:  barley feeding. II.

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.

day 87: yet another bath. I.

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.

day 87: yet another bath. II.

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

day 87: developmental mobile

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?

day 86: photo op. I.

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.

day 86: photo op. II.

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.

day 86: photo op. III.

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.

day 86: upper GI exam. I.

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.

day 86: upper GI exam. II.

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

day 86: upper GI exam. III.

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.

day 86: upper GI exam. IV.

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

day 86: upper GI exam. V.

kris conforts eric right before the upper GI exam begins.

day 86: upper GI exam. VI.

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.

day 86: upper GI exam. VII.

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.

day 86: upper GI exam. VIII.

kris comforts eric after we believe the procedure is finished.

day 86: upper GI exam. IX.

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

day 86: upper GI exam. X.

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.

day 86: upper GI exam. XI.

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.

day 86: upper GI exam. XII.

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.

day 86: upper GI exam. XIII.

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.

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

day 85: sleeping in his bouncy seat. I.

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.

day 85: sleeping in his bouncy seat. II.

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 83: on reglan and risks, part two. reserve capacity gone?

day 83: first visit from grandpa eric!

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.

day 83: first visit from grandma snowdeal!

( 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. )

day 83: catching the reflux. I.

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.”

day 83: catching the reflux. II.

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.

day 83: learning new bottle feeding skills

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.