Tag Archives: reflux

the eric update – day 94: waiting patiently. too much rice.

day 94: curled hand with creases

hey, today was pretty boring, in a good way. we just sat around waiting for tommorrow when we’ll hopefully have a much better idea as to when eric will get a the “o.k.” to go home. he didn’t have any alarms and seemed to continue to recover from his recent severe episodes of reflux.

day 94: a nose, an eye, a hand and an ear.

i’m not sure we’ll get much sleep tonight as we ponder whether he’ll be coming home in a day or two or three or six or ten. and with not much by way of “excitement” ( in a good way ), i fill the time by taking macro shots of my son 🙂

day 94: moussed hair

kris has given him another bath and put cream in his hair and on his hair to help prevent a condition known as cradle cap. the cream makes it appear as if we’ve moussed his hair.

day 94: measured

i guess it’s a good thing that the recent big news is that we’ve discovered that we’ve been adding too much rice to his feedings to control his reflux. yesterday we discovered that we were adding twice as much pulverized rice to his milk than he needed which is nice to know since the solid food in his diet is making him a little gassy. hopefully less rice will mean that he’ll have less gastrointestinal troubles.

for the record, if your adding pulverized rice to milk you only need 3/4 of teaspoon per 45 cc’s of milk. previously we were adding 1.5 teaspoons per 45 cc’s which is correct only if you’re using rice that isn’t pulverized.

you really do learn something new everyday in the nicu.

the eric update – day 93: impending exit from the nicu?

day 93: a boy and his dog. I.

we haven’t heard any concrete dates about when he might be ready to go home, but his neonatologist told us today that they are going to consult with surgeons and various specialists and come up with a plan on thursday morning! i don’t think he’ll be going home on thursday, but they said that we’ll have a much more concrete idea on thursday evening about what steps need to be taken in order for him to be discharged! if everything continues to improve, i think we’ll be busting out of the nicu, very, very soon. of course, we’re vigilent of falling victim to the the curse of the nicu and we’re careful to not ever mention that he might be coming home when we’re by his bedside. all the nurses are familiar with the curse and completely understand when we spell out h-o-m-e as we’re discussing the issue within earshot of odin .

day 93: reflux "desat".

it might have been a little bit of an overstatement to say that his reflux disappeared. every so often he lets us know that he’s still refluxing, even though he’s sending very little milk out his nose or mouth. despite the occasional desats, he’s still doing quite well – although his doctors admit that they don’t know exactly how to account for his speedy recovery when just last week it seemed that he was a good candidate for surgery.

the third green line from the top shows a running tally of his heartrate and on the left side of the screen you can see a substantial dip of over 60 beats per minute which occurs when milk has started go up into his esophagus stimulating nerves that slow his heartrate.

the blue line below the green line shows his blood oxygen saturation level and you can see that it also dipped ( known as a “desat” ) as a result of his slower heartrate. his blood oxygen saturation fell below slightly below 80% which is enough to make the alarm go off, but not enough to make him change skin color from pink to blue.

the desat alarm is not too bid a deal, but if his heartrate has continued to fall below 80 beats per minute then a different alarm would have sounded indicating that his heartrate had fallen dangerously low at which point he’d be having an episode known as bradycardia.

day 93: a boy and his dog. II.

when pressed to give the odds, his doctors still think that he has a 30-40% chance of needing the nissen and g-tube surgeries, although obviously they’re getting confident enough to begin the discussions about when he might be able to come home. despite the fact that the odds are increasingly in favor of not performing the surgeries, the doctors indicated that they’ll probably send him home with his inguinal hernia unrepaired on the chance that he’ll eventually need the hiatal hernia, nissen and g-tube surgeries, thus diminishing the chance of needing to put him on the ventilator several different times ( in other words, they’ll hedge their bets and vent him once and perform whatever surgeries they need to perform all at one time ). also, despite being caffeine free, they said that they will probably send him home on a “home monitor”, since they’re not sure if his reflux will return after being sent home.

since it’s impossible to know if his heartrate is fluctuating and he’s desatting when he’s not showing obvious signs of refluxing, i have to admit that i feel a little more secure knowing that he might be coming home “wired”.

the eric update – day 92: a third gregorian monthly birthday! reflux disappears!

day 92: a third gregorian monthly birthday! I.

it’s hard to believe that it’s not his first not his second but his third gregorian monthly birthday! we celebrated by spending a little quality time on my chest.

amazingly, he’s continuing to gain weight at a stupendous pace and is flying past the 5 pound mark and weighed in at 2,380 grams or about 5 pounds 4 ounces!

day 92: a third gregorian monthly birthday! II.

we didn’t have any cake on hand for his birthday, but we did have a little reglan which seems to be doing a good job of controlling his reflux. if fact, it’s doing such a great job that his doctor’s don’t think that he’s going to need surgery! that’s right, just four days ago it seemed inevitable that he’d need some sort of surgery, but today his doctors said that he’s doing so much better that he’ll likely not need any surgery afterall. oddly, they don’t even want to do another upper GI to see if the volume at which he starts to reflux has changed, since it seemed to be such an important number to everyone.

his progress has been truly remarkable, especially over the past couple of days. he’s pretty much completely stopped spitting up and blowing milk out his nose and, more importantly, his blood oxygen and heartrate levels have greatly stabilized. last week, even when he wasn’t spitting up, his heartrate would oscillate up and down, varying by as much as 40 beats per minute; the variations in his heartrate were caused by milk entering his esopagus and stimlulating his vagus nerve which helps to control how fast the heart is beating. in the past few days, these variations have greatly decreased and occasionally they’ll disappear entirely after an hour has passed after feeding.

so was it the reglan? the rice? the weight gains? the time taken to get acclimated to the new environment and recover the ROP surgery? who knows – maybe all the above. it’s hard to describe the feeling of having something like severe reflux just dispappear. poof. will it come back, if he gets stressed out after coming home? i guess we’ll find out soon, since there really aren’t too many reasons left for us to be in the nicu!

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 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.