the past few days have been a little hectic. here's the update:
we started boarding yesterday... this means that we're staying at the hospital. it also means that we don't have internet access. (unless someone knows a wi-fi hotspot here that i haven't been able to find.)so the updates will be a little more sporadic unless i can get my husband to start doing them when he goes home to take care of the mutt.
we had another family care plan meeting today, this time with daddy in attendance. the head doc said that she expects us to be here until day of life 100 or so at least. (read: another month.) BUT, her feedings are going GREAT! which is just one more thing that we don't have to worry about. here are the requirements to go home:
no apnea events for 5 days-check
feeding well-almost check
breathing well (preferably on room air, which incidentally is 21% for those that don't know.)- not even close
in an outfit from pop :)
-as lucky as we are to not have any major setbacks in the other areas, the sicknesses she faced early on, with infection and "not quite pneumonia", have set back her lung development significantly.
-it is ok for her to go home on a smidgen of oxygen... we've been told that is a real possibility for her.. but we hope she'll turn a corner and just decide to come off it altogether.
-she has never really had problems with apnea,(categorized as more than 20 seconds without breathing) only a few episodes in her whole life, so we don't expect that to be a problem. we are seeing more periodic breathing, (characterized by slow deep breaths followed by quicker breaths.) this is standard fare for even the heartiest of term babies. so it's not a concern.
- some people have mentioned steroids. the doc said at this point the risks (brain growth restriction) far outweigh the benefits (probably breathing on her own already). apparently several years ago dexamethasone was commonly given for up to 6 weeks to preemies. after following those kids, and comparing them to counterparts born at the same gestational age that didn't receive them, they discovered that it was causing in most a restriction on brain growth, affecting IQs and developmental progress. they give other steroids now, and in much smaller doses... usually inhaled (because apparently most kids that get them are on the ventilator anyway) instead of systemic, which lessens the side effects. she said if wren were to get very sick now and backslide... still being on the vent at this time.. she would go ahead and give them. but for what wren has been through where she is now is acceptable.
- where is she now? she's on cpap 6 hours, then on cannula 6 hours. and she seems to be tolerating it well!
some of you may remember that her ROP exam was yesterday. she has stage 1 zone 3 in one eye, and the other is still just immature. this is great! the doc said it's very possible that she wouldn't even have any vision problems caused by it. (if it stays where it is.) she is out of the woods as far as laser surgery at this point.(reserved for babies with stage 3 and above.) but, as an aside, preemies are very likely to need glasses due to just everyday nearsighted/farsightedness.
here she is with a headband covering her eyes after the exam... smart work jeanette!
today we got to up her feedings to 4 a day (every other feeding)! woo-hoo! let me tell you people... breastfeeding is WAY better than pumping. now, i'm super happy to have the ability to pump (a thank you to medela!) since i've needed it... but, man am i ever relieved that she is finally starting to feed. it is so nice and peaceful and gives a chance to connect with her in a way that nothing else can. (that i've experienced so far anyway.) and for those of you out there that told me "think of her smell", or "think of your daughter", or "think of her nursing", to help me get my milk flowing when i pump- now it works!! :) i think i had to have experienced those things to relate back to them in a way that could get my milk flowing. i still haven't had any issues regarding leakage.. but i've had several people recommend lilypadz. have you guys used those? i don't have any problems now.... did anyone get them later on? or any preemie mommies get leakage issues after starting to breastfeed? (when i'm nursing i can feel my trademark painful letdown in the opposite breast, but still no leakage.)
and, just for your amusement, i would like to relate that apparently there is an apparatus that hooks up to a man to simulate breastfeeding. (i'm on a hospital computer now, but i'll be googling this later to show a picture!) haha.. thadd decided that was my job and he'd just leave it to me!
the great poop debate-
her poo is still what the doc called "gourmet mustard". it's up from a "french's mustard"... which is good... in the right direction from "just the oil that comes out when you don't shake your mustard". just to respond to kathy's comment on a previous post i did ask her about altering my diet at this point. she recommended for now that we just continue what we've been doing since it seems to be getting better. the doc said that something (exclusive hind milk, or hmf) could have aggravated her to the point of colitis, which would take a week or two to clear up. i've stopped giving exclusive hind milk, and she obviously doesn't get it when she breastfeeds anyway. wren still gets her crack spackle every diaper change to keep the poo off her skin... she's all healed up and we want to keep it that way! we're also using gauze sponges to wipe her instead of the "washcloth/paper towels" that are standard for baby wipes. i'm making my own wipes very soon! i've already purchased the viva paper towels! :)
- head ultrasound next tuesday... just the normal check up. they're supposed to get them at 1 week, 1 month, and 36 weeks ish.
- she got her first ot consult today. the therapist said that her muscles seemed ok, and that she had good grip and range of motion. the exercises she gave us to do are all just things that seem really obvious. (move her legs up and down, same with the arms, show her things to track, let her grab our fingers.. etc.) so we'll continue to do those things.
getting her OT consult
overall... good news... but we've got such a LONG month to go... ick.
and, thadd forgot my shampoo... we've got to figure out a way to live at the hospital and still live at home as well... we welcome advice!