instead of saying conventional things like "have a nice day," or "have a good day," my grandfather (pop-pop) would always say "have a large day." yeah, i come from good stock. and i am writing this blog because i have just had myself a rather large day. here are the details:
of course there was the usual, taking care of the baby (which involves trach-care, g-tube care, getting dressed, love, chest PT, equipment checks, emails to nursing agencies, formula mixing, love, emails to medical equipment supply companies, love, love, love, cold washcloths for his tooth that's coming through, love, walks through the neighborhood, bouncing, flying, love, bottle-feeding, tube-feeding, spoon-feeding, love, love, reading books, talking, joking, love, jumping, bath, more trach care, more g-tube care, changing trach-ties, love, changing into pee-jays, more chest PT, love, medications all day long, talking to the home-health nurse, love, and i'm sure there's more that i'm leaving out but that's a pretty good depiction.
and then there was that dinner i cooked: chicken burritos. yum. i'm about to go make myself another one just because i brought up the subject. enough said.
board game. this was brought on inconspicuously by me and aaron laying on the couch, bored for maybe one minute. so i looked at him and said "wanna play a game?" so we ended up playing apples to apples. it is the kind of game where more is merrier, so we invited billy and rowan to play along. since it is a card game where you essentially pick a card, we just held the choices up in front of the baby and he got his chance to make a choice. he did that by either smiling at a card, trying to grab a card, or headbutting a card. he was a good little player and actually ended up WINNING the game! yay rowan! mommy couldn't be more proud :)
curling my hair. yeah you heard it first. i actually spent time on my looks. i am moving up in the world. rowan helped me put my hair in curlers and i must say it looks GOOD.
about ten tons of laundry.
kalhua. mi-mi (pop-pop's wife)'s recipe. passed down the generations to little old me. i made 24 pints this evening which are currently sitting in darkness for one month until they can be brought out and given away as christmas presents and consumed in people's living rooms as white russians. i have made kahlua for the past 5 or 7 years (not sure) save last year (due to the bedrest issue) according to mi-mi's recipe so that in itself is big for me.
pumped 6-7 times. also good.
watched the steeler's game. or at least payed a small amount of attention to the steeler's game while making kahlua in the kitchen.
listened to a "this american life" episode about penn state. i'm not penn state alumni or even a fan, but it made me shed a few tears.
i haven't really sat down and rested or reflected on my day until right now. i haven't had a chance. so i think that qualifies as a large day. maybe humongous, but i'm not trying to brag. we'll just call it large and leave it at that.
here's to hoping tomorrow's just as big :)
Showing posts with label diet. Show all posts
Showing posts with label diet. Show all posts
28 November 2011
16 July 2011
status update and etc...
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!
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!
26 June 2011
rowan's eating "habits"
i should probably rename this blog "notes from behind a breastpump" because that seems to be when i write these things. my life is pretty busy now, and i guess that's the only time i get to slow down and think. i have been pumping exclusively (i.e. without breastfeeding at all) for almost 6 months now. from what i understand, most women aren't able to do it for that long. i'm not sure why i got so lucky, but i can't say i'll miss it when it's time to stop. it is good for the ro-man so i'll take it while i can. the little bugger will eat from a bottle (something most trached/vented babies won't do), but he's not too interested in breastfeeding. plus after i pump i have to add extra calories and protein to the stuff to make sure he grows sufficiently. babies with BPD (or bronchopulmonary dysplasia--rowan's official preemie-lung-disease diagnosis) burn so many calories just trying to breathe that they often don't grow so well. so even if he was interested in breastfeeding it wouldn't be a great idea...because the milk wouldn't be fortified with the extra calories and protein that he needs. so i pump. and pump. and pump. takes about 30 minutes at a time and i'm supposed to do it every two hours while awake, so you can imagine what a huge time-suck that is. since rowan's been home i'm lucky if i can do it every 4 hours, but like i said before, i'll take what i can get.
we recently went to see pediatric surgery (one of rowan's many specialists) for a follow-up on all the surgeries that rowan has had. the doctor was asking me about rowan's eating habits. he looked a little stunned when i rattled off "80mls of breastmilk fortified to 27 calories +benepro four times a day by mouth if he will take it (if not we put it in his g-tube--a handy little thing that provides us direct access to rowan's stomach so the poor kid can't get away with not eating), and 27 calorie similac with iron plus benepro plus microlipids continuously at night, 35ml/hr for 7 hours via g-tube." honestly i'm not sure why he was surprised; i'm sure he's seen babies like rowan before. but it struck me once again how regimented and un-natural this all is. it always makes me laugh when rowan has a gassy day and one of the nurses usually finds it necessary to ask me if i ate something funny. um, let's see here...my child is basically being force-fed measured amounts of food with several different types of synthetic additives, not to mention 8 million medications. as soon as he farts twice in a row, let's blame the breastmilk (the only thing he eats that is actually supposed to be easy on his stomach.) yeah, that makes a lot of sense.
we recently went to see pediatric surgery (one of rowan's many specialists) for a follow-up on all the surgeries that rowan has had. the doctor was asking me about rowan's eating habits. he looked a little stunned when i rattled off "80mls of breastmilk fortified to 27 calories +benepro four times a day by mouth if he will take it (if not we put it in his g-tube--a handy little thing that provides us direct access to rowan's stomach so the poor kid can't get away with not eating), and 27 calorie similac with iron plus benepro plus microlipids continuously at night, 35ml/hr for 7 hours via g-tube." honestly i'm not sure why he was surprised; i'm sure he's seen babies like rowan before. but it struck me once again how regimented and un-natural this all is. it always makes me laugh when rowan has a gassy day and one of the nurses usually finds it necessary to ask me if i ate something funny. um, let's see here...my child is basically being force-fed measured amounts of food with several different types of synthetic additives, not to mention 8 million medications. as soon as he farts twice in a row, let's blame the breastmilk (the only thing he eats that is actually supposed to be easy on his stomach.) yeah, that makes a lot of sense.
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