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