Tag Archives: transfusion

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 48: gifts! last transfusion? no alarms (except pops induced)!

day 48: loose cannula

there’s no doubt about it. we’re back to the ho-hum days that are mostly filled with kangaroo care.

eric is being transitioned from the cpap to the nasal cannula much more quickly than previous attempts. today, they altered his schedule to alternate between 4 hours of cpap and 4 hours of the cannula. amazingly, he only had 2 brady’s (bradycardia, or slowing of his heart rate ), the entire day and both were while he was on my chest, which, of course led to endless jokes from kris and nurse jan. both brady’s were due to his head slowly getting into a position that made it difficult for eric to breath. of course, whenever eric’s on my chest he seems to enjoy putting his head in the position that will lead to a brady. i imagine that he thinks it’s a fun game to have me move his head in the correct position, only to move it slowly and imperceptibly back to the wrong one. over and over we play the game and sometimes he wins and has a brady.

eric also likes to tug on his nasal cannula, pulling the prongs out of his nose. if he weren’t doing so well breathing on his own, we’d know when the prongs were out of his nose, as his blood oxygen levels would start to decrease. but since he is breathing so well, we don’t see the “desat” and only later discover that his prongs have been out for as long as 10 or 15 minutes at a time, which is yet another sign that he’s getting stronger.

day 48: eric meets babo the ugly doll

some longtime friends, matt and erin, who we haven’t seen in awhile came into town this weekend bearing gifts! eric was happy to receive his new ugly doll, even if the nurses were all a little perplexed as to what an ugly doll was and why on earth anyone would want to buy one. but we don’t care what they think, since eric and the ugly doll got along quite famously and found themselves in long, heated discussion about which of them was taller.

day 48: eric and babo discuss who's longer

clearly, the ugly doll has no grounds for his assertion that he is, in fact taller than eric.

day 48: eric's new handcrafted knit cap

in addition to giving him the ugly doll, they also gave him a cap that erin knitted with her very own hands! the nurses were all very impressed that the cap was knit by a nicu rookie, since it can be tough to make the cap snug, but not too snug, and it should also be quite stretchy in all directions to accomodate the various forms that his very malleable head might take on from day to day. there’s a bit bucket of “discards” in the waiting room outside the nicu that have been knitted by volunteers but that haven’t passed the quality control inspection from the nicu staff, but eric’s cap won’t be in it, because it’s about as perfect as you could want it to be. thanks!

day 48: diaper change from pops. I.

there’s nothing special about the fact that i’m changing eric’s diaper, but i couldn’t remember ever providing photographic evidence to dispute any lingering suspicions that i might be trying to shirk diaper changing duties.

day 48: diaper change from pops. II.

it’s a bit more tricky to change his diaper these days, since it is seemingly impossible to not get the velcro on the diaper stuck on the shirt before you get all the cords and lines out of the way.

day 48: diaper change from pops. III.

as i change his diaper, it strikes me that as odd to think that some day we’ll actually change his diaper and not have to worry about pulling out IV or feeding lines or detaching sensors.

day 48: diaper change from pops. IV.

it occured to me that i’ve only casually mentioned his intravenous feeding and having discussed at greater length a very important element of how well eric is doing.

day 48: total parenteral nutrition.

so it’s time for a short course in parenteral nutrition, where parenteral refers to food that enters the body through a blood vessel. in what is known as total parenteral nutrition, all of the essentials ( carbohydrates, protein, fat, vitamins and minerals ) are delivered directly through an IV line in one of eric’s veins.

day 48: lipids

despite all the active research that has gone into parenteral nutrition and fact that it’s probably one of the greatest reasons that eric has been able to keep growing despite suffering from pneumonia, i can’t help but feel that the bag of fluids look suspiciously like gatorade and the the syringe surely must be filled with lard and not some state of the art blend of short chain lipids as they claim.

day 48: another feeding

day 48: eric's 16th transfusion

eric received three more transfusions today which brings him to a grand total of 17 thus far. he needed the transfusions because he still has a hard time making new blood as quickly as he breaks it down and they’re talking a lot of samples out to keep close track his immune blood counts while he has pneumonia. we were told today by nurse jan that, if things went as they expected, today’s transfusions would be the last he’s likely to receive during his stay in the nicu!

day 48: checking his lungs

eric’s lungs are sounding so good that it’s not really clear whether they’d still would say that he has pneumonia. in other words, he might just be fully recovered!

day 48: pooh borrows the cap

it’s interesting to note that while we were free to explore giving “directed donations” ( where we give the blood that eric would receive ), we didn’t because it apparently takes so long to process and screen the donations that they often get the donations back after they are no longer needed. also, the screening criteria for neonatal donations is so rigorous ( i.e. can’t have any antibodies for many common ailments ) that it’s often difficult for the parents to pass the screening test. so while the staff would never prevent us from giving blood, they’ve always strongly hinted that it’s easier, safer and faster to just get transfusion from their trusted pool of special neonatal donors.

day 48: ending the day with a little 'roo

because they have to monitor his blood pressure and other vitals closely during the transfusion, there’s no kangaroo care to be had during the process. of course, kris wasn’t going to let let three transfusions get in the way of lots of kangaroo care, so she simply had to time the sessions differently than normal. speaking of timing, while you might think that we can just waltz into the nicu and do the ‘roo, in addition to having to work around the transfusions, we also have to be aware of the nurses rounds which occur every two hours. and it’s also nice to get the kangaroo care in while he’s on the nasal cannula as the cpap mask can have a hard maintaining a good fit while he’s doing the ‘roo. so there’s quite a few “knowns” that we have to deal with in addition to the usual array of “unknowns”, such as getting kicked out abruptly in the evening, just after kris had settled in with eric, to prepare for two new admits.

the eric update – day 36: stabilizing. gagging. and just a bit of jealousy.

day 36: bearer of the ring. II.

eric spent the day stabilizing. as quickly as things started falling apart, they appear to be coming back together, thanks to the fast response of his care team. he’s still on the vent, but amazingly, he’s doing so well that they they’re just letting him cruise to give him a rest while he fully recovers from the infection. his differential blood counts are all returning to normal and there’s still no sign of bowel perforation. we’ll never know what caused his skin to start to slough off. nurse debbie said it might not have even been an infection at all, but rather a circulatory issue. micropreemie skin is so delicate that small changes in circulation can cause the skin to deteriorate.

day 36: gagging

there’s certainly no doubt that eric’s gag reflex is developing quite well, as he spent much of his waking time choking on his endotracheal and od tube which releases air from his stomach. although he was relatively comfortable, it was still quite difficult to sit by his bedside and watch him gag on his tubes over and over again. they could have taken him off his vent today because he doesn’t appear to need its help for breathing, but they want to let him get a little more rest while he’s recovering from his infection. from where we’re sitting it’s hard to see how he’s able to rest while he’s gagging, but i guess that’s the way it goes.

day 36: yet another transfusion

he got another 10 cc’s of blood. they are taking a lot out of him since they are running a bunch of bloodwork to monitor his infection. whatever they take out, they have to put back in.

day 36: blood pressure

whenever they give him a transfusion, they monitor his blood pressure closely. the white cuff on his right leg is pressurized, which is making his foot red. eric doesn’t like this one bit. if you look close you can see that he’s squeezing his fist and pushing it against his thigh, while sucking a bunch of air in his belly and kicking up his left leg.

no, he’s not happy at all. soon it’s all over.

day 36: get this blood pressure cuff off me!

he’s wriggling his foot as if he’s trying to kick off his cuff.

day 36: cuffed leg and hand

so, other than a little gagging and a transfusion or two, it was a fairly quiet day. i suspect in the next day or two, eric will be back on the cpap and start feeding again. maybe we’ll even get to start kangaroo care.

day 36: transfusion stopcock. I.

today, we also had to deal with an issue that any nicu parent faces – comparing your child to those around you. it’s one of those things that you know you can’t do, but which is basically impossible not to do. in our case, one of the new admits across the way happens to be a 27 weeker who came in at 1 pound 9 ounces.

day 36: pampers (tm). III.

he’s aready on nasal cannula full time and graduated from a radiant warming bed to an “isolette”, which means that the don’t think that he’ll require as much intensive care as eric still requires.

day 36: pampers (tm). II.

while we’re tremendously happy for the 27 weeker parents, it’s hard not to feel jealous at how much difference two weeks can make, as we watch eric gag on his ET tube.

the eric update – day 31: 2 pounds! a gregorian birthday. a vent?

day 31: two pounds!

2 pounds, 1.7 ounces! 956 grams! almost a kilo! on his first “real” gregorian monthly birthday, eric decided to surprise everyone and break the 2 pound mark! everyone was completely surprised, because after getting close two nights ago, he dropped back down to 1 pound 13 ounces last night, and a typical weight gain for him might be a half ounce. so he gained nearly 4 ounces in a single night, which is unprecendented. i guess he decided that we could use a present on his birthday. and yes, i’ve already decided that, instead of just celebrating ‘4 week’ milestones, we’ll also celebrate regular monthly “birthdays” since he probably deserves as much celebrating as he can get. hitting the two pound mark is A Big Deal, so we’re very, very happy.

day 31: transfusion. I.

it was nice to have such great news towards the end of the day, because most of the day was spent anxiously awaiting to see if they were going to put him back on the vent. yes. that’s right. the vent. on this rollercoaster, in the span of 48 hours, we can go from seeing if he’s strong enough to be on the nasal cannula for 24 hours, to being told by the neonatologist ( you know thing are getting serious when you find yourself having an unscheduled chat not with a nurse or nurse practitioner, but with he himself, the neonatologist. ) that he had so many alarms over the previous night that they are close to putting him back on the vent.

day 31:  transfusion. II.

but first, they were going to give him a few blood transfusions because his red blood count was dropping to levels where it was possible that his lack of “boxcars” was really the root cause of his respiration problems. low boxcars, means less oxygen, which means he has to work harder just to stay at the same level, which means he gets tired and starts alarming. or at least that’s the theory. they game him 8 cc’s of blood 4 hours apart ( 4:30 p.m. and 8:30 p.m. ). so it’s time for everyone’s favorite way to pass the time – The Waiting Game. they’ll run his bloodwork at 1 a.m., run the numbers and decide if he needs a third transfusion before tommorrow morning. which means we get to spend the night wondering if we’ll find him on the vent in the morning.

day 31: on his permanent record

all the red marks indicate when his heart rate dips and he stops breathing. if he gets too many marks on his record, then he goes back on the vent.

as a consolation prize for having to play the waiting game over the night, the nurses all made a point to express that they are fairly confident that his dropping red blood counts are what are causing the problems; they had made a clinical note just last night that he was looking particularly pallid and that he would likely need a transfusion soon. but he’s had 17 a’s and b’s through the day, so nobody can really say or sure if the transfusion will kick in before they decide to put him on the vent. or if the low red blood count really is the underlying issue.

day 31: torso

so be sure to tune in tomorrow for the next exciting episode of The Waiting Game.

the eric update – day 17: YABPTMAKC

day 17: a transfusion

yes. it’s Yet Another Boring Post That’s Mostly About Kangaroo Care.

today when we arrived i happened to catch him getting a transfusion. there’s nothing out of the ordinary about this transfusion. he’s had 7 of them so far, which is to be expected.

he gets 7 cc’s of blood with each transfusion. obviously he’ll get increasingly larger transfusions as he gets bigger. he doesn’t seem to mind them too much, although after he got this one he started to cry and there didn’t seem to be anything we could do to settle him down.

his jaudice is getting better without any phototherapy. his bilirubin levels have dropped under 4 and went from 3.7 to 3.4 in just the past 24 hours. so his liver is getting better at processing the toxic byproducts of dying red blood cells. interestingly, a nurse told me that they aren’t really sure precisely why phototherapy helps to break down the billirubin, but back in the 70’s they noticed that the babies that were close to the windows in the nicu did better than those that were not.

day 17: and still more kangaroo care

one of the tricks of being in the nicu is learning how to relax with all the commotion going on around you. bells. there are always bells.

kris seems to be doing an admirable job, no?

today, she’s humming a tune to eric and a guy in the next bed over is humming a tune to his child. they’re both horribly out of key and using slightly different time signatures, which is driving me batty.

apparently, i stand corrected about kangaroo care and its adoption in the states. kangaroo care is “becoming” standard practice in america, but it’s not as fully adopted as in europe, where it’s not uncommon to have separate rooms with beds to encourage parents to stay 24 hours. i had commented yesterday that i was surprised that there were prominent nicus in the u.s. that didn’t advocate kangaroo care, but that was based on old information ( from a book that was only a couple of years old, so you can get and idea of how quickly it’s being adopted ), according to nurse jan ( whose hands star in part two of ‘the fourth’ and whom we think eric enjoys immensely ). in fact, the other nicu in town is going to be building a new facility and rumour has it that they will be adopting the european practice of having sleeping areas for parents to encourage them to stay for as long as possible.

day 17: and still more kangaroo care.  II

sadly, from what we’ve seen, it might not be appreciated by as many nicu parents as you might think. this might come out all wrong and i might just regret saying it and i’m not trying to cast any dispersions or make any judgements, but we’ve been stunned at how few visitors come to see the other babies. the nurses have commented that it’s not that unusual and that it’s very difficult for them to see how little time your average nicu parent will spend with their children. i think we see people visit for see average of a half and hour a day. period. including on the weekends. and nights. again, i know this is going to sound like i’m saying “ooooohhh, we’re sooooooo great and you’re not. neeener. neeener” and i’m not trolling for “you’re such fantabulous parents” comments; and i certainly understand that people react to the trauma of being in the nicu fishbowl differently, but it’s honestly shocking when you think about the fact that most of the kangaroo care studies recommend at least two hours per day. and those crazy europeans want you to sit around all day.

i guess i’m honestly wondering what the other nicu parents are going through. i’m sure there’s a nicu family counselor out there that could shed some light on the many varied ways that families react. [ update: see this thoughtful response for many rational reasons as to why nicu parents might not be around as often as one might think. given what i’ve seen i supsect i might not be being as sensitive to the ‘distance’ ( we live a mere 4 blocks from the nicu ) and the ‘other responsibilities’ ( i guess those other responsibilities don’t go away on the nights and weekends ) issues. ]

day 17: after 'roo cleanup

did you notice he had a nasal cannula in during the kangaroo care? he’s breathing so well, that they’ve decided to take him off the CPAP mask while he’s doing the ‘roo.

day 17: contented

oh. and he’s on 2.5 cc’s of milk per hour! and he’s producing poops on a regular basis! well, he still needs a very tiny suppository to keep things regular, but he’s pooping nonetheless.

no smiles or cutesy eyes today, but he’s content nonetheless.

he has a whole 3 hours of ‘roo time with kris, which is a new record.

i know i’ve said before, but he really, really likes it.

if you look closely at his arm you can see that the bulbous thing has disappeared.