well it's a new day and i'm feeling much better now. i woke up at 5:30 to relieve the night-shift nurse who leaves at 6AM because...(insert drum roll here)...we have NO DAY NURSE TODAY...(insert applause and tears of joy.) i actually get to relax and chill in my own house in the morning without someone talking in my ear immediately as soon as i wake up about this or that all. morning. long.....rowan is still snoozing in his crib at this point, but i'm so excited about the fact that when he wakes up and needs something, I will be the one who gets it for him. i'm sure there is a parent somewhere reading this saying, "oh my god this lady has all the free child-care in the world and she's bitching about it. what a numbskull!" but believe me when i say it gets old fast. yes i can sleep in and leave the house unrestricted whenever i please and it does come in handy sometimes, but the trade-off is huge, as i believe i've made it perfectly clear in this and other posts.
i had the thought that, at some point, there might actually be a nurse somewhere who reads this and is offended at all the complaining i do. and that's fine. all i can say is, it's nothing personal. most of you are REALLY great, and somehow make a seemingly unbearable situation somewhat tolerable. but i'm sure you already understand the complexities inherent in the job you do. and hell, it's my blog and i'll cry if i want to.
so now that i got the obligatory bitch-fest out of the way, i am proud to announce that rowan had his early intervention therapy evaluation about a week ago, and they felt he was behaving on a 3-month-old level, which jives with his adjusted age. this is great news, as we have been told that, due to his prematurity, he is at risk for having developmental delays. so far, he isn't showing it, though, and the news was good so we'll take it! another good piece of news is that his hearing really seems to be improving since he got home. preemies are at risk for hearing loss, and when he left the rehab, his speech therapist was very concerned that he might not be hearing as well as he should. i tended to agree. he didn't startle to loud noises, and generally didn't respond when talked to. he failed his first hearing screen in the NICU, but the nurse that day told me he was very agitated for the test and that could be part of the reason why, but this obviously added to our concern. we follow up with audiology on july 22nd, but in the meantime since coming home, he has started to show more signs that he can hear us. he is startling and responding to voices more often than he used to. our primary care doctor told us a few weeks ago that some babies who spent a lot of time in NICU are used to so much noise pollution that they need to be in a quiet environment for a while before they start to differentiate sounds. i'm hoping she was right.
in other news, rowan is starting to get used to his passy-muir (or "speaking") valve. he still isn't 100% back to where he was before we discovered the old one was broken, but some days we can leave it on for over 2 hours without him being too bothered...a big improvement from 5 minutes at a time only a couple weeks ago. he is also learning how to make some vowel sounds which is just the cutest thing ever to watch. he is starting to make shapes with his little lips and say "ahs" and "ohs," and then smiles like he just did something really awesome (which he absolutely did!). the other new thing he's doing is something we call "the lip trick" which is where he tries to suck his top lip into his mouth and make a smacking noise. fascinating, i know. i could watch him do that for hours.
and my little boy is growing like a weed! at his doctor's appt on friday he weighed in at 12lbs 2oz, which is at least two pounds heavier than he was when he left rehab one month prior. my goodwill donation pile is growing, too, as he doesn't fit in most of his clothes anymore. the boy is literally too big for his boppy!
we also made some changes to his feeding schedule which involved increasing his total volume (since he grew), and ditching the overnight continuous feeds. his doctor likes to use these as a way to "sneak in" extra calories and promote growth. it seems like a really good idea, but rowan's little gut didn't seem to like it, judging by the way he thrashed about in his crib all night, not quite waking up, but not resting comfortably either...and very gassy. most other parent accounts that i've read said pretty much the same thing about continuous overnight feeds: that they seem to increase gassiness/fussiness/cramping during sleep. and it just makes common sense that when you're sleeping, you're body should be resting, gut included, and not trying to do the work of digestion all night long. so long story short we got rid of the continuous feeds and rowan just gets 100ml bolus feeds, either by mouth or by g-tube, 6 times a day. i get to pick the times...as long as he gets 600ml per 24-hour period the docs are happy. right now i have the night nurses putting two of them through the g-tube while he sleeps, but will soon try to spread them out so he can have more periods of restfulness overnight. so far he is sleeping much better by all reports. so that's that.
well i'd say that's a pretty decent update. the only other thing i guess everyone usually asks is "when can he come off the vent?" and the answer is, of course, it depends. but it definitely won't be before the end of this winter. rowan's lung doctor feels he still has some beefing up to do before the big event, and also that it would be thoroughly unwise to try and wean him during cold and flu season. if rowan gets a cold or the flu, that is when he will really need the vent, i'm told. so here's looking forward to a winter full of tubes, wires, and home health nurses. thanks for reading, and i hope everyone is having a large day!
