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the eric update – day 14: the weigh in

day 14: the weigh in

i haven’t been posting many updates on eric’s weight, because – well – not much interesting happens in the first couple of weeks ( unless he gets sick and loses a bunch of weight ). all his energy in the beginning is spent fixing vital systems and isn’t directed towards weight gain per se. micropreems will typically lose a little ( it’s normal to lose about 10 percent of their birthweight in the first few days ), slowly gain it back over the following two weeks, and then ( hopefully ) go on a weight gain tear.

tonight, he weighed in at 685 grams, which is about 1 pound 8.2 ounces. he was down to 1 pound 6 ounces a few days after his birth, at which point he weighed 1 pound 7 ounces.

so he’s perfectly normal. for a micropreem.

we also learned tonight that, after being taken off breast milk when he went back on the vent, he’s back on regular “feedings” ( technically they aren’t feedings at all, but rather “gut priming” to get the blood flow going in his stomach, but gut priming has a much less appetizing ring to it, so i just call everything a feeding ). he’s on an IV drip of breastmilk at a rate of 1 cc per hour, which is different than the previous feeding protocol known as “gavage” feeding which involves putting a few drops in his endotracheal tube. i think they are being a little more cavalier about the amount that they are giving him because it’s being given through his new “o.j.” tube goes straight to his intestines ( see today’s prior post for more information on his feedings, the “o.j. tube” and how this all might be related to his most recent downturn ).

i’m a little suprised that they would start putting him on 1 cc per hour of milk when they were expressing concern that some of his issues over the past few days might possibly ( or might not, depending on the latest theory ) be related to his feedings, but what do i know. i’m not a doctor. and i don’t even play one on tv.

in any case, if we tolerates his feedings, i’d expect him to start gaining weight quickly over the next few weeks.

oh. and as you can obviously tell from the picture – he clearly doesn’t like to be weighed.

the eric update – day 14: baaaack in the CPAP saddle! and more kangaroo care.

day 14:  a new tube

lots and lots of things going today. he was doing so well on the vent and they were so quickly dialing back the “assist” settings that they put him back on the less abusive CPAP regime last night! w00t! again, they thought it wouldn’t be unusual for him to stay on the vent for a few weeks, so this is a great sign that he’s recovering quickly.

day 14: pooh and piglet marvel at his progress

his white blood count differentials are looking better. they still haven’t found a specific bug and nurse practitioner dawn and i talked about the meaningfulness of the tests for quite some time today. they are useful as a “barometer”, but not as useful as compared to full-term differentials, since there seem to be so many special exceptions to the rules for micropreems, as their immune systems simply respond differently or not at all. n.p. dawn has apparently seen micropreems close to death with no differentials at all and perfectly healthy babies with big swings “to the left” ( she kept referring to a “swing to the left”, which i’m sure refers to a change in the standard differential graph, but i never bothered to clarify the point so i could be wrong ).

day 14: pound puppy looks on

so, in the continuing saga of making Educated Guesses, since they’ve not found anything in his cultures ( again, you might not ever find anything in the cultures ) and his insulin has stabilized, they feel that he could be: 1. responding appropriately to the antibiotic regime. 2. stabilizing after being Just Plain Tired and the differentials were a Big Red Herring 3. stabilizing after having a bout of the earliest stages of necrotizing entercolitis (NEC), which is an inflammatory response in his gut that we talked about the other day and which could cause the differentials that they were seeing. 4. stabilizing after “aspirating” his food back from his stomach into his esophagus, which – for reasons that aren’t well understood – can cause apnea, bradycardia and differential shifts to the left.

day 14:  the arm bend

when eric went back on the vent, they stopped his feedings, which would have reduced the potential inflammatory response ( just one of the many variables that changed ) and/or the potential aspiration events, so they are now moving away from the yeast infection theory and towards the theory that he’s not tolerating his feedings.

day 14:  foot

to that end, the observant among you will notice that he now has a green “o.j. tube” ( oral-to-jejunum ) inserted through his mouth ( can you guess where an “n.j.” tube originates? ) and threaded down his esophagus, through his stomach and directly into his intestines ( you did remember that jejunum is the name for the beginning of the intestines, didn’t you? of course you did. ). the o.j. tube will reduce the chance that he will aspirate his food.

day 14:  the leg bend

the potential NEC is a little trickier to manage ( and much, much more problematic if they don’t catch it in time ). about the only thing they can do is reduce the amount of milk they give him in the “gut primings” and watch him very closely.

day 14:  more kangaroo care

anyway. the greatest part of going off the vent and back to the CPAP is that we can start the kangaroo care again! and this time kris had him on her chest for over 1.5 hours and completely hogged all the time. i think she needs to learn how to share 🙂

the biggest excitement of the day came at the end of the kangaroo care when eric decided to surprise everyone by pulling out his endo-tracheal and o.j. tubes. i can’t imagine that it was very pleasant, so hopefully he’ll realize not to do that too often. he was quite unhappy with nurse donna when she abrupty had to wisk him away from kris to start rethreading tubes.

oh, and it shouldn’t go unmentioned that as of 8:36 tonight, he’ll be two weeks old, which brings his overall survival stats to closer to 85%, which is certainly a lot better than his chances when he first came into the nicu.

the eric update – day 13: a mostly lazy day

day 13: holding hands

today was a very boring day with not a single, solitary alarm; well maybe this is not quite true actually, as the nurses will typically induce apnea during some of their procedures, but nobody counts those. except maybe for eric.

he’s still on the vent, but they are continuing to gradually reduce the settings and suspect that perhaps over the next few days he might be able to go back to the less abusive CPAP regime. this is surprisingly good news, because the staff has been suggesting for the past few days that he could possibly be on the vent for a couple of weeks.

and his infection seems to be getting better. there’s still no definitive results to indicate what sort of infection he might have, but all of his differential blood counts are looking more positive and his blood sugar is normalizing.

during a quiet moment, i catch kris holding eric’s hand/arm. he just had a few procedures done that he didn’t care for and she’s using a technique that the nicu staff taught us to calm him down – i.e. he feels more secure when you firmly hold his arms and legs against his body. it gives him a sense of boundary that he got used to in the womb.

day 13: wrinkled II

so, with a lack of white-knuckle events to pass the time, we found ourselves enjoying just sitting around his bed, reading more from winnie-the-pooh, talking with the always informative and mostly cheery nicu staff and just generally having what passes for a lazy saturday these days.

it’s amazing how much his skin changes from day to day, depending on whether or not he’s received a transfusion or how much fluid he’s retaining.

today he seems particularly wrinkled.

every so often he’d open his eyes and watch me taking pictures, but he didn’t seem to want to keep them open for long.

the eric update – day 12: bugs in the system

sorry to say, i don’t have any substantive news to report today. overall eric appears to be in the early stages of fighting an infection of indeterminate origin, so we got a refresher course in infections and immune response as the staff plays a detective game based on clues from his differential blood count. as i’m sure you all remember from your high school biology classes, there are many different kinds of white blood cells and his doctors are trying to deduce the best therapeutic course based on the available evidence.

why not just “plate out” a sample of cells and see what kinds of bugs are growing? well, therein lies yet another peculiar prematurity problem. the staff can only withdraw a very small sample of blood to test for infections – perhaps a half a cc at a time. this is such a small sample of blood that it’s unlikely in the earliest stages of infection that you’ll actually catch the bugs in the withdrawn sample. in many way, you actually don’t want to find the bug, because then you’ll know that the infection has progressed farther than anyone would like.

so you can’t base your therapeutic course of action on the results of a culture. perhaps you could just blast his system with a wide spectrum antibiotic? that’s no good either, as you’d be creating an environment, what with all the humid oxygen-enriched air that’s being pumped into his system, that would support the quick creation of antibiotic resistant strains of whatever you’re trying to pummel into submission. there are also other generalized bad side effects that result from the administration of prophylactic antibiotics in micropreems.

so you rely of educated guesses after looking at his entire clinical picture. there’s still nothing showing up in his cultures and his total white blood counts are now stabilized, after going on the upswing over the night. more informatively, his neutrophils ( his “big gun” immune cells as wendy, his nurse practitioner, likes to call them ) are down and his bands ( immature neutrophils ) are up. so something is picking off his immune system “heavies” and he’s trying to make more and they aren’t maturing fast enough. his blood sugar is starting to rise slowly, which more specifically indicates that he might have a generalized yeast infection. or at least that’s what they are guessing.

so they’re leaning towards proactively treating him as if he has a yeast infection, but they don’t want to pull out the antibiotic equivalent of a gatlin gun ( technically, it’s called amphoteracin, but all the nurses call it amphoterrible ), because it has nasty side effects that are all the more nastier when you’re born 15 weeks premature. but they did stop his gentamicin which is a general purpose antibiotic and started him on something that i can’t spell because i scribbled it too quickly in my notes and now i can’t read the name. hi. ho. maybe it wasn’t important 🙂

and adding insult to injury kris went to the doctor and discovered that while she’s well on her way to making a full recovery, in terms of her blood pressure at least, she has not one, not two, but three different bugs who have started calling her bladder home. of course, there is no single antibiotic that will kill all three, so she has several horse pills that she needs to take several times a day. the doctors don’t appear overly alarmed, “as long as they don’t move to your kidneys.”

the eric update – day 11: The Call on A Very Small Animal

day 11: back on the vent

the phone is ringing.

you awake with such a start that you actually have to remember that you were just sleeping.

after remembering where you are and that phones ringing at odd hours are A Bad Thing, you’re off the bed and launching yourself out of the bedroom and into the hallway, heading towards the place where the cordless phone should be, but isn’t.

you wonder why the phone is never in the first place you look, as the answering machine that’s cleverly located down three flights of stairs picks up the call. your adrenaline is pumping now, but not quite enough to stop the asinine thought from entering your head that it might have been a wrong number.

after navigating the byzantine phone menu you finally see what you knew all along – a missed call from st. mary’s hospital.

you discover that it’s clearly not going to be a good day when you try to dial the number revealed on caller-id, only to find that the number has been disconnected. it doesn’t make sense in that way that only makes sense at this hour. defeated, you toss the phone to your better half who somehow manages to get a nicu nurse on the line.

efficiently, it’s relayed that nothing tragic has happened.

“o.k. he’s back on the vent?”

“you had to ‘bag’ him twice in the night?”

“his bloodwork indicates that he might have an infection?”

you wonder if there are any negative side effects to repeated and prolonged episodes of fight-or-flight syndrome as the conversation ends with a succession of “um. yeahs.” and “o.k.s” and a final “o.k. we’ll be there as soon as we can.”

and so coffee is made, dogs are walked and breakfast is skipped, but a shower is not.

as you walk into the nicu, you can see all the nurses looking at you kindly, but observantly, out of the corners of their eyes. they know you’ve received your First Serious Call and they are observing you for signs of A Major Freakout. you think you feel fine but you wonder if maybe you don’t know yourself as well as you might like to believe.

as you walk up to his bassinet, you hear the acronym soup that is suprisingly comprehensible: a ‘PIP’ of 15 and ‘PEEP’ of 5. his backup respiratory rate provided by the ventilator is 40 and his ‘oooohs’ are set to 35%. he got ‘bagged’ twice in the morning even after going on the vent and his wbc went up to 11 from 1, which means that he could be developing an infection; consequently, they’ve begun giving him vancomycin and genomycin.

you watch in one particularly unsettling episode as your child turns gray as your wife and the nurse attempt to get him breathing again.

as they’re telling you all this, you notice that your new social worker, jennifer, is emerging from the background and trying to calmly assess you. you imagine that your reactions might even become part of your permanent record. you reassure jennifer that, indeed, you have the mental fortitude and steadfastness of character to weather the most perfect of storms.

day 11: an ear and hair, a shoulder and a bit of tape

later. with no kangaroo care to be had and him spending much of the day sleeping on the vent, you find yourself studying your son’s head for quite some time and decide that today is a good day to begin teaching him about pooh.

you might not be able to touch him, but you can certainly still read him his first book.

“”it is hard to be brave,” said piglet, sniffing slightly, “when you’re only a Very Small Animal.” rabbit, who had begun to write very busily, looked up and said: “it is because you are a very small animal that you will be Useful in the adventure before us.””

day 11: his first book

the eric update – day 10: care. kangaroo style.

day 10: kangaroo care I

so i guess you really can’t prepare mentally for what you’re going to experience in the nicu. yesterday we had no idea we’d spend the day getting our son to breath and today we thought we’d probably walk in and find him on the vent.

instead the nicu nurse exclaimed, “how’d you like to try some kangaroo care today!”

it was one of those moments where you want to start running laps around the nicu stations yelling, “yeeeeeeehaaaaaaawwwww!” but you don’t. because that would be rude and self indulgent. not everyone else is having such a good day. so you just walk over to your station with a certain jaunt to your step and get ready for Another Perfect Moment. incidentally, this is a good example of the subtleties and nuances that one must observe while becoming a ‘nicu parent’. you’re in a fish bowl with a half a dozen people on their own emotional rollercoasters and you’re all simultaneously trying to figure out how to “become” a parent in front of complete strangers.

day 10: kangaroo care II

kangaroo care is simply a way of holding a premature baby so that there is skin-to-skin contact. the process is fairly simple – or as simple as you can get when you’re holding a baby who has attached a variety of sensors, wires and tubes; eric, wearing only a diaper, is placed against mine or kris’ bare chest. in addition to providing both parents with a great way to bond with your child, it has been proven to bestow a range of physiological benefits to the child, from stabilizing the baby’s heartbeat, temperature and breathing to boosting a premature baby’s brain development. and it’s a whole lot of fun.

day 10: the fuzz

after all the kangaroo care, he looked completely content and i noticed that he seemed to have much more fuzz on his face.

if you look close you can see that his eyelashes and eyebrows are coming in.

day 10: the thoughtful fuzz

he strikes a thoughtful, if a bit fuzzy, pose.

day 10: resting after a massage from pops

kris held him for an hour and indeed, his breathing and heart rate improved, as evidenced by a lack of apnea alarms. of course, as soon as the nurse put him on my chest, his oxygen dropped and we basically spent 10 minutes trying to get him to breath deeper before giving up and putting him in his bed. feeling like i got the short end of the kangaroo care stick, i decided to give him a massage with an ointment that smooths his skin, prevents water loss and helps him retain heat.

the eric update – day 9: the rollercoaster

day 9: glued to his vitals

eric was “throwing” more alarms than usual today. mostly apnea ( forgetting to breath ) and bradycardia ( slowing of the heart rate ). while completely normal, it can still get tiring to sit, staring at the monitor, with a hand ready to rub his back or the bottom of his foot to jumpstart his breathing, if the alarms start. last evening he had 6 apnea/bradycardia incidents alone and he had 8 more over the night. typically, he might have 3 or 4 in an entire day – so the rate has definately increased.

when micropreems are having trouble breathing it means, at best, that they are getting tired and at worst something else is going on, such a systemic infection ( in this particular case, it’s probably not a generalized infection, since they didn’t see an elevated white blood count in his latest labs ). in either case, you’ll often see a range of systems start to work less efficiently as things start to slow down. and when that happens, the nicu nurses have to do many unpleasant things to your baby while you watch. this is the sad part of their job and they are all the more heroic for doing it day in and day out.

the machine creates a quick succession of “bing! bing! bing!”, if his pulse/oxygen levels dip along with his heartrate creating a “low rate alarm”. this is not necessarily a concern, but rather a warning.

a different and more urgent sounding pattern of “bings!” emanates from the machine if the “low rate warning” progresses to full-blown apnea ( not breathing ). at that point nurses will start running to the bed, while you try to remain calm.

eventually, when they see that you’re not going to turn into a mass of useless flesh when the alarms start ringing they’ll teach you how to see that your son really isn’t breathing ( i.e. it’s not a false alarm ), and they’ll show you a variety of ways of getting him “jumpstarted”, ranging from rubbing his back in a specific spot to tapping his butt or the bottom of his foot.

today i got him breathing a handful of times over a few hours, which i guess constitutes a form of bonding. right when i snapped this picture he went into full-blown apnea and i had to drop the camera and rub his back, so i could only get a shot of the less urgent “low rate alarm”.

day 9: the abuses suffered

the nurses are going to put him back on CPAP full time, since the nasal cannula takes a little more work on his part and if they need to start “bagging him” ( ventilating him manually with a small bag like you might see on the tv program ‘ER’ ), then it’s possible that they might put him back on the oscillating vent. i don’t even think they’d call it a set back, but rather he’s just telling us that he’s tired and would like us to take over for awhile while he recoups.

another sign that he’s getting tired came when they suctioned the contents of his stomach and found 1.5 cc’s of undigested colestrum. they are giving him 0.5 cc of colestrum every 2 hours, so clearly his digestion has slowed. if the food sticks around for too long then a condition known as necrotizing enterocolitis (NEC) – which are a big couple of words for rotting bowels – can set in quickly, as the blood supply to his bowels is decreased or interrupted. under those conditions, hypoxia ( lack of oxygen in the tissue) can kill or damage the cells in the bowel wall, eventually leading to perforation and peritonitis ( infection of the abdominal cavity ). advanced NEC is something you don’t ever want to see, since it requires very difficult bowel surgery, so they’ll be watching him closely.

in this picture, eric is suffering through the least of his abuses as nurse peggy is pulling the undigested contents of stomach out through his endo-tracheal tube. he gets a half a cc at each feeding and she pulls out 1.5 cc’s, so he’s not digesting much.

right before nurse peggy sucked out the contents of his stomach, she aspirated his nasal passages to increase air flow. it sounds innocuous enough, but it involves threading about six inches of tubing through his nose, into his sinuses and down his throat, all the while rotating and thrusting the tube to suck out any last drops of mucus.

day 9: finally resting

after hours and hours of alarming and being probed and prodded and “jumpstarted” the alarms have settled down and he’s looking like he might be stabilizing.

he eyes us warily as nurse peggy tells me that he’s doing well, all things considered.

so, in the end, today was quite demanding and typical of the rollercoaster that a 24 weeker can put you on; and when juxtaposed against what happened yesterday, today was a great reminder that one needs to focus on enjoying each moment for what it is.