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.
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.
well, it’s more of the same today – feeding and sleeping, sleeping and feeding, sleeping, sleeping and feeding. i think we’re going to find him off tube feeding entirely quite soon, as he’s now able to take four or more bottle feeds a day, depending on the nurses discretion as to how tired he’s getting. i think he’s also getting strong enough that soon kris will move from non-nutritive suckling to honest-to-goodness breastfeeding.
for his past couple of feedings, eric had started to increasingly behave in a way that i interpreted to mean that he was getting tired of having a bottle – closing his mouth, pursing his lips, blocking the bottle with his toungue etc. usually when this happens, the nurses are quick to “gavage” him ( feed him via a tube ), with the explanation that it’s best to get his feeding done quick so he has enough time to digest his food.
tonight, when i was feeding him and he hadn’t taken a sip in ten minutes, i started to signal to his nurse that maybe it was time gavage him. i had noticed that nurse marlene had been watching me closely while i was feeding; she walked over and gingerly picked up eric but to my surprise, instead of putting in a tube, she started to whisper to him that she had a lot of faith that he knew exactly what he needed to do to eat. and much to my astonishment, in about five seconds, eric was guzzling away.
nurse marlene is the archetypal nurse caregiver. if you close your eyes and imagine the most grandmotherly of grandmotherly nurses and you’ll likely being envisioning nurse marlene. her white, couffed hair, bifocals and ageing hands betray the fact that she’s been nursing for quite some time and all that experience translates into the thousand little things that she’s doing which result in an easy bottlefeeding.
she very sensitively explained to me all the things i was doing wrong. most obviously, she sits him up, while tilting his head back. i often lay him along my forearm, while holding his head with my hand, which tends to tilt his head foreward making it more difficult for the milk to go down.
she also showed me a great technique for getting the bottle nipple past his tongue. he likes to put his tongue on the roof of his mouth and pretend that he’s sucking, but in reality he’s just playing with the bottle. nurse marlene showed me how put the bottle in his mouth so that the nipple touches the inside of his cheek and then she swoops it past his tongue.
as if that weren’t enough, i’m also being far too timid about putting the nipple all the way in his mouth. apparently, my fears of gagging him are vastly overblown.
nurse marlene continued here tutelage with a lesson on the proper way to burp. his head must be tilted up, not down as i had been doing. and she carefully but very firmly grasps him while keeping his airway open. she swings his head and torso in a full 360 degree circle to show me just how firmly she’s holding him, as his head doesn’t change it’s upward tilt during the arc.
i’m admonished to not rap on his back either, and she rolls her eyes when i tell her that’s what the other nurses do. she’s gently massaging his back and right on cue, eric lets out a little burp.
she clarifies that a properly burbed child never needs their back rapped and i suspect that she might be making a comment about the burping skills of some of the other nurses.
thanks to his low hemoglobin levels and, well, the fact that he is a micropreemie who needs to spend all his energy growing, eric is spending much of his days acting a little listless and sleeping quite a bit. we received the results from his latest blood work and his hemoglobin level is now officially at the same point is was when they gave him his last series of transfusiona. when exactly he’ll get some more blood has become a great conversation topic, and it’s a sneaky way to get a sense for which nurses agree with the neonatologist’s course of action and which don’t. he’s holding out like a champ, although he’s “desatting” more and more, especially when he’s active, which makes feedings an endless series of alarms.
eric is continuing to add weight, thanks in no small part to the fortifier. to put things in perspective, he’s getting about 30 extra calories a day from his fortifier ( about 4 calories per ounce of milk are added ) and that small addition of calories is primarily responsible for his ounce-a-day weight gains. tonight he weighed in at 3 pounds 14.7 ounces or 1777 grams. if he keeps it up, i’ll be much more confident that we’ll be able to celebrate his hitting 4 pounds by his 10 week birthday on sunday.
while it might be boring for you, poor reader, we aren’t quite bored with the fact that eric is doing such a great job taking his bottles. he’s up to three bottle feeds a day, with the remainder being done via a tube that goes straight to his stomach.
when he’s tired, he’ll often feign like he’s not really interested in eating, but we know it’s all a big act and he inevitably drinks his entire bottle in 20 minutes or less. if all goes well, over the next week or so, we’ll be responsible for giving him all his feeds via a bottle, which will be quite exciting, indeed.
after much nagging from the nicu staff, kris and i selected a pediatrician today! we are notorious for taking months to decide on something as simple as a new toaster, so picking a pediatrician could have been something that threw us into months of “analysis paralysis”. that is, if we actually had months to make the decision. but we didn’t, as the nicu nurses have been making it increasingly clear that they needed to start making arrangements with our pediatrician, like, yesterday. so we created a “short list” by asking all the staff who they would take their kids to and correlating the answers with the list of peds doctors in our insurance plan. we then scheduled “meet and greet” appointments and asked a few pointed questions, which led to a surprisingly quick decision.
for the most part, today was a pleasantly quiet day. eric continued to guzzle his bottle feedings in near record setting time – he cleared away his 40 cc ( 4 more than his feed required ) evening bottle in 15 minutes! the nurses are continually amazed at how well he does with his feedings. currently, he only gets two bottle feedings a day, with the rest being done via a tube. if he keeps up the great work they will gradually increase the number of bottle feeds.
eric put on another ounce and weighed in at 3 pounds 13.2 ounces or 1735 grams. if he keeps gaining an ounce or so a day, he has a pretty good chance of hitting the four pound mark by his ten week birthday!
they also decreased his nasal cannula again to 1.25 liters per minute. he’s started “desatting” ( decreased blood oxygen levels ) a bit more and had a few more “a’s” and “b’s” ( apneas and bradycardias ) around feeding time. this is probably due to the fact that his hemoglobin levels are getting low and has a diminished oxygen carrying capacity; after he gets another another transfusion, which we expect to happen in the coming days, everything should clear up quickly.
i guess there’s no small amount irony in the fact that we haven’t finished getting our registry in order for our baby shower for a baby who is already two months old. our shower was originally going to be on july 31st, but we moved the date to september 19th to give us time to adjust to being in the nicu.
some might remember that there are good reasons why kris trots me out to babies ‘r us in the evening. we had a fun time picking out a bunch of cloths for eric; “grandma pam” accompanied us to the store and spent entirely too much money, but i suspect that grandmas like to do that sort of thing. thanks! grandma pam
today was yet another day tiny little steps of progress. first, eric had the rate of nasal cannula air flow turned down from 2 to 1.5 liters per minute. you might recall that the last time they turned down his flow, he started alarming often that the nicu staff thought he might have an infection. it’s amazing to see how differently he responded after only ten days. it’s even more amazing when you think about how much lower his hemoglobin levels compared to then ( he’s still due for another transfusion ), which means his oxygen carrying capacity should be lower, but his stronger lungs can more than make up the difference.
the fortifier seems to be working, as he put on another ounce and weighed in at 3 pounds 12 ounces or 1700 grams.
eric completed the transition to three hour feeds appears to be tolerating the increase in feeding volume wonderfully. his first “3 hour” bottle feed was an enormous 36 cc meal and the nurses didn’t really expect him to take the whole thing down before getting too tired. but they were pleasantly surprised to be proven wrong. he drank the entire bottle in about 22 minutes!
you’ll notice that we’re very aware of exactly how long it takes eric to eat. that’s because we have exactly 30 minutes to get him to take his food via a bottle. if he doesn’t get everything down in that time, then he’s “gavaged” ( the term for tube feeding ). the strict timing is due to the fact that you want him to have the most amount of time to fully digest his food before the next feeding; and the staff begin to get concerned about how many calories he’s burning while bottle feeding after a half an hour. it’s strange to think that the extra calories burned from being out of the isolette can make a big difference.
so there’s a bit of strategy involved to get him to take all the food in the proper amount of time. one tactic is to switch his bottle nipple during his feeding to make it more or less difficult to get the milk. you can differentiate the nipple by the color of the plastic ring surrounding the nipple. a white ring indicates the most difficult and a red ring is the easiest, while peach is a medium difficulty nipple. we found that we had to use all three nipples during his feeding to make it easier for him to get milk as he got increasingly tired. why not just start with the “red” nipple? because if he’s not tired, he’ll get too much milk at once and gag.
who knew that feeding could be so complicated? that said, he’s doing fantastic and word spread quickly through the nicu that he was able to take his first “3 hour feed” bottle in the proper amount of time.