Tag Archives: reglan

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 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.

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

day 82: getting back to getting his groove on?

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?

day 82: temperature taking

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 71: another transfusion. reduced reflux. reglan questions.

day 71: living strong with a new transfusion

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 surprising 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.

day 71: burping in a big, blue hat

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 70: a 10 week birthday! and way too much progress for a pithy title.

day 70: into an open, unheated bassinet. I.

eric celebrated his 10 week birthday by quickly ditching his isolette after only 9 days and moving on to an open, unheated bassinet! the open bed is the very last stop before graduating from the nicu – yippee!

day 70: into an open, unheated bassinet. II.

eric’s caregivers don’t want him to spend too money calories keeping warm so they take great care to make sure that he’s really bundled in blankets. he seemed to be holding his temperature quite well during the day, so i think he’ll manage the transition well as long as we keep him swaddled.

day 70: new meds

it’s not uncommon for micropreemies to reflux their food which can cause them to stop breathing, or even worse, the refluxed food can get into their lungs and cause all sorts of problems.

we’ve noticed that most of eric’s “desatting” ( lowering of blood oxygen ) and bradycardias ( dangerous lowering of heart rate ) occur after feeding, which means that he might be starting to show signs of mild reflux; to help relieve the condition, they’ve started to give him zantac to reduce the reflux and reglan to help move things along more quickly. if the meds work as intended, the doctors might not need to give him a round of pulmicort, since much of his need for supplemental oxygen seems to be related to reflux.

day 70: helpful reminder

nurse nancy leaves us a not so subtle note to remind us to not forget to take our infant cpr class on wednesday. really, she’s telling us not to wait until the following wednesday because we’ll likely be getting too close to eric’s release day.

day 70: lance armstronged bassinet

in addition to the yellow “live strong” armbands, we received dozens and dozens of blank “live strong” postcards, which i decided to plaster all over his new bassinet.

this is only a small portion of the bed that’s covered, but i thought it was the best shot.

after two months of enduring this kind of behavior from me, the nurses have learned to stop asking why.

day 70: hungry boy

eric’s nurse is fiddling with his nasal cannula, which is why he has the plastic “blow by” tube in his face that is gently wafting oxygen towards his nose and mouth.

it’s close to feeding time and he decides that he very much wants to suck on kris’ finger while he waits for food.

day 70: sick of the nasal cannula

eric’s nurses turned down his nasal cannula “flow” to 0.5 liters per minute, which is way down from the starting point of 2.0 liters per minute. when the flow gets to 0 liters per minute, he’ll be able to be rid of the nasal cannula entirely.

as if to prove a point, he kept ripping the nasal cannula out of his nose and staring at us. he did this over and over and it was hard to not interpret the action as his way of saying that he was ready to be free of supplemental oxygen.

his blood oxygen levels looked so great that his nurse decided to take his nasal cannula off for two 20 minute periods while watching his stats. he did great so i suspect that he’ll be off oxygen support much sooner than later, if the reflux meds work properly.

day 70: four pounds!

woohoo! in addition to everything else, eric hit the four pound milestone on his ten week birthday! somehow, i managed to not get his entire raised fist in the frame. hi. ho.

it’s hard to imagine that a mere three weeks ago we were celebrating him hitting three pounds. hooray for eric!

day 70: record setting bottle feed

eric decided to celebrate all the big achievements by drinking his 9 p.m. bottle in four minutes. i’m not joking. i guess there’s no doubt that he’s got the bottle feeding thing down.

is it just me or does it seem like his custom knit cap is getting a lot more snug than it was just three weeks ago?