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the eric update – day 52: still more postcards and gifts! and progress, micropreemie style.

day 52: hand on head with feeding tube. I.

today was another quiet day of making slow, steady progress. he’s increased his breastmilk feedings to 8 cc’s every two hours and appears to be continuing to tolerate them well. they will usually pull out up to 3 cc’s of undigested food before each feeding, but that amount doesn’t seem to be increasing as they up his total feedings, which is a good sign that his digestive system isn’t slowling down.

if he continues to tolerate the “bolus” feedings ( where they give him the breastmilk all at once, instead of a “continuous feed” where the milk is pumped in at a constant rate ), then they’ll keep adding a cc to the amount that they’re giving him every two hours. so tommorrow, i’d expect him to be on 9 cc’s every two hours. and given his wieght, he’d need to be getting about 20 cc’s every two hours to be on full feeds again ( meaning no additional parenteral nutrition from the IV ), which means he could have an intravenous line in for a ten days to perhaps two weeks. he’s having a little bit of trouble keeping a good IV and i think they might be running out of nice big veins; i suspect that sooner rather than later they might be forced to put the line in less attractive locations like his scalp.

day 52: hand on head with feeding tube. II.

we got some more postcards! and we’ve received lots and lots of gifts lately, from friends family and strangers, and i just haven’t had time to properly acknowledge them. i’m going to put pictures of everything up as soon as i get the free time, but in the mean time, please know that we’ve enjoyed everything we’ve received and are continually amazed at the new suprises that the mail seems to bring each day.

the eric update – day 51: saying goodbye to cpap. rumors of an isolette.

day 51: all nasal cannula, all the time

woohoo! he’s on all nasal cannula, all the time! and not alarming at all. o.k. he still has the occasional apnea or brady, but they’re all for reasons that don’t particularly concern the staff. he’s on 7 cc’s of breastmilk every two hours and tolerating it well – not great, but not bad either. Every so often they’ll pull a few cc’s of undigested milk out of his stomach before they introduce the new milk; if the amount that they pull out increases then they’ll slow down his feedings.

so, day 51 was a very, very good day. and there are whispers among the staff that, if he keeps up keeping up, then he’ll graduate to an isolette and ditch his radiant warming bed! amazing!

day 51: feet on palm

sometimes a simple shot can put into perspective just how small he still is.

day 51: hand grasping feeding tube

he often likes to grasp his feeding tube after milk has been introduced, which is sweet and sad at the same time.

the eric update – day 49: eric’s 7 week birthday!

day 49: 7 week birthday kangaroo care

let’s all give odin a little birthday cheer, as it’s his 7 week birthday today! he gained a few grams and is now solidly in the 3 pound category at 3 pounds and 3.5 ounces. he also added a half a centimeter and is 38.7 centimeters or 15.25 inches, which means he’s added 3.25 inches to his length in the past seven weeks! woohoo! he’s rapidly being weened from the cpap and is on 6 hours of nasal cannula and 4 hours of cpap. since he’s doing so well breathing on his own, i suspect that within the next few days they’ll see if eric can go 25 hours on the nasal cannula. despite having to do more breathing on his own than ever, he’s throwing very few alarms; he only seems to alarm when the nurses are doing their “meanies” or when he’s put his head in a position that’s not conducive to breathing. his breastmilk feeds stayed the same as yesterday, as they’re pulling up more undigested food than they’d like to see, so they’re going to back off a bit on increasing the amount of milk that he’s receiving. you might remember that anytime digestion slows and milk starts hanging around, there’s an increased risk for a gut infection, so they’re just going to take things slow.

day 49: ouch!

the nasal cannula needs to be taped on his face to reduce the chance that he’ll pull it out and the process of repeatedly removing the tape when he goes back on cpap has made his skin a little raw. tonight, he even has a tiny bit of flesh pull away, which he obviously didn’t care for at all; nurse peggy put little pieces of what’s known as comfeel on his face to prevent it from happening again because open, irritated sores are not a good thing when you’re enduring a prolonged stay in the nicu.

day 49: pacified. I.

eric’s getting much better at coordinating his sucking and breathing; a mere week ago, he’d alarm when a pacifier was in his mouth for more than 15 or 20 seconds, but now he can keep the pacifier in as long as he’d like. since he’s doing so well, nurse peggy said that it’s a good time to introduce a pacifier during his breastmilk feedings so he can begin to associate sucking with feeling of food in his stomach. this is but the first step in a long process of getting his used to having to coordinate the sucking, swallowing and breathing that must occur for real breastfeeding, so it’s a big step.

day 49: pacified. II.

sometimes he has trouble keeping the pacifier in his mouth with the tubes in the way, so peggy has “illegally modified” the paci by notching it so that the tubes can stay where they need to stay and he can more easily keep it in his mouth. nurse peggy is thoughtful like that.

day 49: longhair

eric’s hair is getting so long that it’s growing over his ears!

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 46: many more postcards. no alarms (almost). and a little ‘roo time with pops.

day 46: where's the dimmer switch?

well, it looks like we’re back to having days where the biggest news came when we received 16 postcards all at once! i had joked with the staff yesterday that perhaps the mailroom got sick of running his cards up to the nicu and maybe there was a kernel of truth in the joke, since some of the postmarks were from 8 days ago. regardless, we finally did get them all and we’ll enjoy reading them to eric over the next few days. thanks again to everyone two has taken the time to send a card ( or two, or three! ). as always, it makes our day that much more special to be able to read eric postcards from all over the world.

in the above photo, as always, eric isn’t too subtle about letting you know that the lights might be too bright.

day 46: broken fingernail and glue

clinically, eric had a – thankfully – boring day. i forgot to mention that he didn’t have a single alarm yesterday and he would have kept the streak going today had it not been for a tantrum after his “eight o’ clock meanies”. at eight p.m. his nurses do the various things that nurses have to do and tonight he let us all know that he was none too happy with the situation. he got really mad and when he gets really mad he’ll decide that breathing isn’t too high on his priority list. the nurses have come to expect eric to be “naughty” ( a common nurse euphemism for when babies are being uncooperative ) at such times and don’t really count it against him on his permanent record.

eric is getting three cc’s of breastmilk every two hours and if he keeps tolerating the milk, i think it’s reasonable to expect that he’ll be back on “full feeds” ( meaning no intravenous fluids ) by the end of the weekend or early next week. obviously, with his gut shutting down last week, they are monitoring him very closely for signs of necrotizing enterocolitis. so far, all signs indicate that he’s tolerating the feeds quite well.

day 46: handus enormicus

eric’s hands and feet were looking a little puffy, which partly can be explained by water retention as a consequence of the intravenous drip. however, his hands looked very puffy and likely related to relatively minor issues with his IV line. due to a variety of reasons he’s been having troubles with the line being put in his hands so after trying a few different locations on his hand they decided to move the entry point to his foot. in the end, they found a spot that seemed to agree with him, but not after leaving a few battle scars on his hands.

day 46: testing my pulse?

in addition to 2 hours of kangaroo care with kris, i remembered to wear an appropriate shirt, so i was able to spend about an hour of quality time with eric, doing the ‘roo.

and finally, kris gave eric a brief bath today without his cpap mask ( meaning he didn’t have any respiratory aid ). he didn’t throw a single alarm and his blood oxygen looked great, which prompted his nurse to make a clinical note that they might want to think about putting him back on the nasal cannula ( the nasal cannula requires more work on eric’s part than cpap and is considered to be the last phase of “assisted” respiration ) sooner than they originally planned. woohoo!

the eric update – day 45: off the vent! kangaroo care! first shirt! doubled weight!

day 45: the transfer

wowza. so many good things happened today that it’s going to be hard to summarize them into an easy to digest nugget. after eleven long days on the ventilator we were quite surprised ( as were many of the nurses ) that the neonatologists decided that eric was ready to be free of the vent. apparently his right lung looked much better than anticipated after this morning’s x-ray and the doctor’s decided that he was recovered enough from pneumonia to give the cpap a try. woohoo! and you know what that means – we can hold him again! here, nurse peggy is handing him off to kris for a little kangaroo care.

day 45: at long last!  a little 'roo time with mama.

despite getting the great news that he was back on cpap and therefore able to be held, everyone thought that he would only be able to stand small amounts of kangaroo care. nurse peggy watched his stats carefully after the transfer for 5 minutes. then 10. then 15. and 20. until she finally decided that eric was doing better off the vent than on. he did spectacularly for an hour, with not a single alarm, and he was only put back in the radiant warming bed when kris decided that she had to go pump breastmilk. it was quite and accomplishment as he’s still has pneumonia. his breathing was as stable as you could ever want it, which is impressive because babies can sometimes get lazy after being on vent, as the machine does much of the work for them.

day 45: being held by pops.

after an hour of kangaroo care from mama i was able to hold him “regular style” ( i had no idea that he’d go off the vent today so i didn’t wear clothing appropriate for kangaroo care ) for a half an hour. fun! (

day 45: his first shirt. I.

as if all the great news about him getting off the vent and getting kangaroo care wasn’t enough to absorb for one day, nurse peggy announced that he’d be getting his first shirt!

day 45: his first shirt. II.

it’s a sign that his caregivers think that he’s getting more stable than ever, since it means that they aren’t so preoccupied with having to see how mottled or flushed his skin is at any particular moment. i picked a very stylish blue pinstriped top.

day 45:  doubled his birthweight!

and last, but certainly not least, eric hit a big milestone today by officially doubling his birthweight. he weighed in at 1335 grams or 2 pounds 15.1 ounces!

it’s hard to believe that he only needs to gain about an ounce to hit 3 pounds. it seems like just yesterday that we were celebrating the 2 pound milestone. gaining so much weight while fighting pneumonia is an impressive feat.

they grow up so fast!

wow! wow! wow! after eleven days of hardship, it’s really exciting to have to much good news to report.

day 45: measuring his head.

random aside – i realized tonight that i hadn’t got a shot of a ritual that occurs every 3 days – the measuring of eric’s head. since the last measurement, his head grew a half a centimeter and is now 27 centimeters in circumference.

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.