Tag Archives: ericiv

the eric update – day 74: still breathing on his own! plummeting platelets. elevated bilirubin. questionable meds?

day 74: still breathing on his own!

he’s still breathing on his own after 36 hours! after 72 days of various forms of respiratory assistance, it’s hard to believe that he may finally be free of supplemental oxygen.

and he’s still eating like a champ, taking all his feeds via a bottle and nursing twice a day. while his official minimum feeding requirement is 40 cc’s in 30 minutes, he seems to enjoy drinking whatever we give him and then a bit more. during his 9 p.m. feeding he drank 50 cc’s in 25 minutes! woohoo! not surprisingly, all the breastmilk is helping him to continue to gain weight and he tipped the scales tonight at 4 pounds 3.7 ounces or 1920 grams.

unfortunately we received the results from two lab test that are a bit of a concern and could potentially delay eric’s release from the nicu. first, after two weeks of watching his elevated “direct bilirubin” level closely, it’s not only not going lower but it’s rising, which is somewhat disconcerting because the predomominant theory being bandied about by his caregivers was that the elevated levels were related to being switched back and forth between IV feeds and breastmilk; according to the theory, after he was on full feeds of breastmilk the levels would gradually decrease, but that’s obviously not happening.

day 74: the big, blue big boy outfit

secondly, his platelet levels are dropping to dangerously low levels. a normal platelet count might be between 150,000 and 200,000 and his results from this afternoon came back at 70,000. this is such a low level that his neonatologist immediately ordered a new test to rule out a lab error. the second test indicated that his platelet count was 60,000.

the elevated direct bilirubin and decreased platelets are cause for enough concern that he’s being put on “increased surveillance” which means they’ll run blood tests more frequently ( which also means that he might need another transfusion since they need to draw blood for the tests ).

as always, there are multiple Educated Guesses that could possibly explain the lab results. his increasingly elevated direct bilirubin levels might be due to his latest blood transfusion, since transfused blood cells die more quickly than “regular” blood cells and direct bilirubin can be a by-product of the red blood cell death. his diminished platelets might be related to the fact that his hemoglobin levels were so low before his transfusion. bone marrow is responsible for producing both red blood cells (RBCs) and platelets and it only has so much capacity to produce both entities. before his transfusion, it’s possible that his blood marrow kicked the production of RBCs into overdrive and slowed down making platelets. or, more scarily, he might be getting a viral infection, which could decrease his platelet count and increase his bilirubin levels. or he could be having an adverse drug reaction to the reglan and zantac which he had been given to help control his reflux. the neonatologist told us this evening that decreased platelet counts are a known occasionally adverse effect of both drugs.

so, for the next 72 hours we’ll patiently wait for the results of his bloodwork and wait for his caregivers to put together a more coherent picture of what might be going on. interestingly, eric’s neonatologist was leaning towards thinking that the increased bilirubin was due to the transfusion and the decreased platelet count was caused by an adverse reaction to the reflux meds. if that’s the case, then we are all the more grateful that my sister, candy, quickly alerted us to the fact that both meds were potentially dangerous. a quick follow-up from regular reader and frequent commenter, katra convinced us to immediately request that the meds be discontinued. at the time that we we asked that his meds be discontinued, the neonatologist was gracious and didn’t make us feel uncomfortable for expressing our concerns, although he did make a point to say that he didn’t think that adverse events were very common. i guess we should be happy that he’s not too proud to be admitting just a few days later that the meds might be the cause of the problems.

hopefully we’ll have more more definitive answers soon.

the eric update – day 73: no nasal cannula! all bottle feeds! nursing! infant cpr. loads of postcards!

day 73: free of nasal cannula. I.

woohoo! in the morning, eric’s nurse decided to see how well he’d do without any supplemental oxygen, so she removed his nasal cannula. he did fantastic and spent the entire day without free of any breathing support.

he’s breathing on his own and apparently racing for the exit door to the nicu!

day 73: free of nasal cannula. II.

an added bonus of being free of the nasal cannula is that he also doesn’t have any tape on his face, which means we can got an unobstructed view of face all day long. it’s crazy to thing that this is the first time in 73 days that we’ve seen his entire face for the whole day.

he seemed to do even better off the nasal cannula than on and didn’t have a single alarm all day long. he’s still desatting and threatens a brady or two during feeding times, which is related to his ongoing reflux issues, but otherwise, he showed no signs of needing any oxygen thoughout the day, which is all the more impressive because he was working extra hard today.

day 73: free of nasal cannula. III.

in addition to breathing on his own, eric has been taking all of his feeds by bottle for the past 36 hours. yes, you read that right – no tube feeding! i’m not sure i can find the words to adequately describe just how remarkable it is that he didn’t need any supplemental oxygen while taking bottle feeding after botttle feeding, considering all the extra energy that is required to bottle feed versus feeding via a tube. and even better – he’s really starting to get the hang of “regular” nursing. i know, it might be too much to absorb all at once, but he’s also nursing at least two times a day!

day 73: free of nasal cannula. IV.

it can sometimes be difficult to understand why micropreemies start on bottles and then transition to nursing, but there really are valid reasons why the staff insist that eric is able get his nutrition from a bottle before attempting to nurse. but even while working to ensure that eric is able to bottle feed, the staff have been working hard with kris and eric find ways to start nursing on a regular basis as he gets stronger. kris has begun to use a nipple shield to great effect. in a week, eric has gone from latching for very short periods of time, to nursing for 20-25 minutes before being given a “comp” bottle to ensure that he’s getting enough milk to keep him gaining weight. it’s not abnormal for micropreemies to not fully get the hang of nursing before they reach 40 weeks, so it’s great news that he’s already avidly nursing at 36 weeks. it still takes a lot of energy on his part to nurse, which is why he’s limited to doing it twice a day, but i don’t see any issues that would prevent him from quickly moving to nursing much more often in the very near future.

day 73: infant cpr

since eric is breathing on his own, taking all of his feedings by a bottle ( and nursing ) and maintaining his body temperature, he’s very close to meeting all the “exit criteria” for busting out of the nicu! that means we need to make sure we learn infant cpr, since it’s not uncommon for micropreemies to stop breathing after they get home.

there were several sets of parents taking the infant cpr class today and they brought a bunch of replacement faces for the infant cpr dolls so that we could remove the face and hand the doll to the next family after we practiced cpr.

i’m not sure why you couldn’t just reuse a face after wiping it with an antiseptic wipe, but what do i know.

and yes, the postcards are still coming in! we’re still trying to figure out a way to put all the postcards in eric’s nursery; we’re open to suggestions. maybe tack them all on a corkboard?.

the eric update – day 72: on being the s.p. in the house and feeling guiltish.

day 72: senior preemie. I.

today holds the dubious distinction of being eric’s first full day as “senior preemie” or “s.p.”. the s.p. designation is given to the preemie who has been in the unit for the longest period of time. the previous s.p. held the title for an amazing 30 days. obviously, a long reign as senior preemie means that the baby has been in the nicu for quite a long time.

day 72: senior preemie. II.

reaching the s.p. milestone is a time for reflection and it’s hard to believe that we’ve seen about 20 preemies come and go from the nicu, some left “healthy” ( mostly 32+ weekers ), some were transported to other hospitals for surgery and one died ( 24 weeker twin). nicu families will naturally look to the senior preemie and their parents for clues to how they might act and feel when it gets close to their own release date; and while this will probably sound like a pathetic plea for a barrage of sympathetic comments ( it’s not, really. honest 🙂 ), it’s hard not to feel something close to guilt when we find other nicu parents asking questions or looking in our direction as the nurses joke with us about eric guzzling his bottles or ripping off his nasal cannula.

it’s an odd feeling and not one that i suspect that many can relate to. obviously we are very, very, very(!) happy and grateful for eric’s astounding progress, but we can’t help shake this guiltish feeling. yesterday, the head nurse came up to us and asked us if we had time to talk with her over the next day or so, but didn’t indicate what she wanted to talk about. i suspect that it’s this guiltish feeling that made both kris and i suspect she wanted to chastize us for being too obnoxiously exuberant. of course, we’re fairly certain that she’s probably not going to scold us and wants to talk about something completely unrelated, but i guess it says something that we both had the same initial reaction, even as we tried to laugh off the thought.

i don’t write about it very much, but it’s increasingly apparent just how differently eric’s nicu stay could have been. the clinical courses of the other 24, 25, 26 and even 27 weekers have been very, very different than eric’s own. given how difficult our own rollercoaster has been, it’s impossible to imagine how the other micropreemie parents are dealing with their own rides and i guess that’s probably where the guiltish feeling coming from.

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?

the eric update – day 69: footie jammies! live strong! pulmicort?

day 69: cuddle time. I.

today was the kind of day where the big news was that eric wore big boy clothes with footies! we got the outfit from a friend of kris’ ( hi beth! ) who gave us a bunch of preemie clothes that have come in mighty handy.

while he’s been able to wear open-footed street clothes for a few weeks, the staff wanted to wait until he was even more stable before we bundled him in footie wear. i thought maybe he wouldn’t like having his feet covered, but he didn’t seem to mind it at all.

day 69: cuddle time. II.

you may have noticed that kris is wearing a yellow “live strong” band from the lance armestrong foundation.

our friends, adam and johanna ( yes, the same adam and johanna who seem to be travelling around the country and sending odin postcards. thanks! ), sent us almost too many bands to count because they thought the “live strong” motto was perfect for little odin. we think so too. we got the bands the other day and i was holding off taking a picture until i could properly “set up” a shot with all the bands surrounding eric, but kris foiled my evil plan.

at the end of the day, eric’s neonatal nurse practitioner told us that they were thinking of giving eric pulmicort to help give him a boost off his oxygen. we haven’t had any time to research the risks and benefits of pulmicort, so if anybody has any opinions, i’d like to hear them.

the eric update – day 68: getting taken to bottle feeding school.

day 68: it's the long lost fingergrab

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.

day 68: getting taken to bottle feeding school. I.

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.

day 68: getting taken to bottle feeding school. II.

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.