and... one very long "week" later....

she is always a happy girl in the mornings

smiling with daddy

she loves to sit up in her boppy!

that girl has some stinky poo!

this was our thanksgiving picture.. daddy was already gone to training

as you can imagine, it's been pretty busy around here. and honestly, i just got out of habit of blogging. well, here we go again! we have had some "adventures" along the way the last few months. i'll post about some of those topics soon. but, for now i'll fill you in on the latest news.

we went to the pediatric pulmonologist the other day. it took roughly a month to get our insurance switched to the new location, and get an appointment with our primary care doctor, in order to get the referrals to the specialty doctors. and even then, the pulmonologist only had appointments out into january! luckily, we got on the cancellation list, and were able to get in sooner.we're also really lucky to have a ped pulm in the area... arkansas children's hospital actually has a satellite office up here in the fayetteville area, providing us with many of the specialists we need. whew. that's a relief. when we move to oklahoma i fear we won't be that lucky... and we'll end up driving several hours to see the doctors.

anyway, they said that she has some alveoli in the bottom lobes of her lungs that aren't expanding. this is called atelectasis. this is probably why she's still needing oxygen. the doc said that the actual damage isn't really that bad now. (not that it isn't there, but as i've said before, it just gets to be a small enough percentage that it doesn't effect her too much.) to treat that we have now got to do an albuterol puff twice daily, followed by "clapping". it's a little cup shaped bendable plastic thing that you hit against her lower lung lobes about as hard as you would aggressively burp. supposedly the reverberation causes the alveoli to open up. while she was there she got an xray and an istat. her CO2 was perfect!! which is great. and i mean perfect even for a regular baby. the same with her ph. she's a little on the alkaline because of her lungs, but overall great! this allowed the doc to start weaning her off the O2 (she wants her on 1/8 all the time, even though she was on 1/16 in hawaii.. :( we've had her on about 1/4- 1/8 here since she'd been congested and whatnot.)we're also weaning her off the diuretics. she'll be completely off the hydrochlorothiazide in 10 days. she lowered the spironalactone to .5ml/2x day. she said she would be more aggressive seeing what she saw already, but since she's never treated wren before she doesn't want to make too many changes at once and then something go wrong. (i completely undertand.. though i'm bummed.)
she has to get an echo next tuesday. (that's also when we see the developmental pediatrician.) apparently BPD kids can get really muscled up hearts because they work so hard. the doc said that her heart needs to be relaxed in order to come off the oxygen. so we'll see what kind of shape it's in.
she also wants me to thicken wren's milk (she gets a bottle of expressed bm twice a day or so) with rice cereal. ugh. it's supposed to keep her from spitting up. (and therefore keep any spit up from spilling over into the lungs.) apparently there are no negatives. it gives her about 15 more cals per bottle.. so she'll go a little longer between feeds. and apparently it's impossible to develop an allergy to rice, so there's not problem in introducing such a small amount at this age.

she said she'd be off by the time we move in early march. though at this point that seems EVER so far away! this momma is ready to not have my baby connected to tubes... and tanks... tripping over the tubes, worrying about the cannula... oh so ready. but, it's all for the best for wren.