friday the thirteenth

three months ago, we visited pulmonology on Friday the 13th. yesterday, Friday the 13th, we visited pulmonology again. and when we checked out, we made our next appointment for three months from now on Friday--you guessed it--the 13th of July! unable to sleep around 4am this morning and watching a today show rerun on tv, I learned that there haven't been three Friday the 13ths in one year since sometime in the 1980s. thank you Kathy Lee Gifford and Hoda Kotbe for this intriguing fact. it is tres bizarro that all our home vent appointments fall on these days. but i'm going to consider it lucky, as we've come away with good news each time so far.

this time we got the go-ahead to continue weaning Rowan off the vent, which means we get to increase his time off by 30 minutes twice a day each week until he's off all day. by our calculations, he will be completely off during the day by mid-june, provided everything goes well. he will still go back on the vent for naps and overnight, which means i still have to take it everywhere with me. but i celebrated anyway by buying Rowan a non-medical stroller off craigslist from a nice couple in uptown Harrisburg. they were very kind to let me "test" their stroller...i.e. shove the vent and suction machine in the basket to make sure it would fit. with a little mcguyver-ing, i got it to work, and i still have complete access to the oh-so-important "silence" button! we are now cruising in style with a deluxe italian stroller :)

bye-bye heavy medical stroller, hello 9lb peg-perego!

there's even a little room on top of the suction machine for a pulse-ox machine or ambu-bag

rowan approves

the other topic we discussed was rowan's weight. he's been looking a little marshmallow-man-esque these days, so we decided to make a few changes to his calorie-packed diet. so we are cutting out microlipids (white fatty oily stuff we've been putting down his g-tube), and beneprotein powder.

see ya later, supplements!

 we are also changing his formula to a higher-calorie content "big-boy" formula (since he is now 1 year old adjusted), which means i can feed him less volume. i'm hoping this may actually make him experience a new sensation called "hunger." since he's been born, we've been working with the mindset that the more weight he gains, the easier it will be for him to get off the vent. under the guidance of his pulmonologist, we've been pretty much stuffing him to the gills with food, using his g-tube. so i'm not sure he's really ever been hungry. i'm hoping this new foreign sensation will cause him to do this strange thing people do...EAT! (while rowan is a champ at taking his bottles, we haven't been so successful in getting him to transition to solid foods.) ever since PREGNANCY i've been obsessed with fattening this kid up, so it will be a big change for the both of us. but i will definitely miss these chunks!

chunky chunky arms

any medical or trach-savvy folks reading the blog, note the pilot-balloon-in-the-armpit look that rowan is rocking. does this happen to every trached kid? i can't seem to keep it out of there!

one downside to weaning is that rowan is drying out a bit. the vent has a heater/humidifier unit that keeps his secretions (or "boogers" as i usually refer to them) moist and easy for him to cough out. you and i (provided you do not have a trach) breathe through our noses and mouths, which naturally heats and humidifies our breaths. rowan bypasses his nose and mouth on inhalation and breathes unhumidified air through his trach. up until now he has been on the vent most of the time, which heats and humidifies the air he breaths. but now that he is weaning off the vent, we are also losing the humidity, causing his boogers to become dangerously dry and sticky things that are hard for him to clear, and on occasions plug up his trach, effectively blocking his airway, and causing major problems. we do have nifty little things called HMEs (stands for heat/moisture exchanger--i think?) which is basically a sponge we put on the end of the trach.

rowan's "nose"

in theory, it traps the humidified air that rowan exhales, and then when he inhales, he can get the moisture back. it also filters the air, so dirt and dust and little bugs don't fly in...gross to think about, right? in reality, it doesn't moisturize the air as well as we would like, so lately i've just been changing rowan's trach a lot...like every two days or so (normally you only need to do that once a week)...to prevent mucous plugs (the medical term for the big nasty dry boogers that block his airway). they do make HMEs that are bigger and work better, and i will be ordering those promptly on monday once my handy-dandy medical supply company opens.

well that's about all the updates i have for today, so i'll leave you with a fitting song from one of my favorite funny-named bands:

 

friday the 13th by deer tick

the one you feed

obviously, free time is not something I have a lot of, as evidenced by the fact that I am typing this post on my iPhone while rowan sleeps on me (some days the only way he will take a nap is if he's lying on top of someone). but I really am trying. I watched a documentary about Anne Leibovitz last night, and she said something to the effect of just having talent is not enough. talent is like a baby, you have to feed it and nurture it so it will grow. this struck a chord with me, so last night while Rowan was asleep, I did some normal stuff - cleaning, teevee watching, but I also did this    ======= >











I was inspired by an awesome book that billy bought me for christmas:

and I also signed up for a crafty online class here:

http://dispatchfromla.typepad.com/dispatch_from_la/rotdoci.html

which I am thoroughly looking forward to exploring this evening when the baby's asleep (in his crib this time.) but don't get me wrong, there's nothing like the cuddles I get from this sweet little peanut. He will always be my top priority, but occasionally I hope to get a chance to "feed" my other babies too ;)

~~~~~

a wise old man was teaching his grandson about the two wolves at war within us all. one wolf is good, fair, brave, honest, and full of hope. the other is selfish, greedy, angry, and full of fear.

"but grampa, which wolf wins?" asked the boy.

"the one you feed," the man replies.

native american folk tale

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!