thanks to my amazing husband for the tribute he wrote to me while he was sleeping on the hard couch/bed at the hospital this past weekend, which brings me to our update...
we are OUT OF THE ICU!!!! yes, i was yelling that. we moved to the heart center on friday. we have a nice little room with a bathroom and shower in it. i had been sharing a public bathroom and shower (even at the ronald mcdonald house they are shared) for eleven weeks.
shilo is doing amazing. most of her medicines have been moved to oral (actually through her ng tube). they will start trying to wean her oxygen down tomorrow (she's on 2 liters right now, but her sats have been 100 consistently). she got to try a bottle today for the first time in almost 12 weeks. she doesn't remember how to suck, but gave it a go none the less. the speech therapist seems to think she will get it. she just has to remember what to do with her tongue, and then coordinate the swallowing/breathing part.
the hardest part of right now is the continued wean of narcotics. she was on diuladid and versed drips the whole time she was sedated. and the combination of the trisomy 21 (people with t21 tend to metabolize sedation meds differently, and therefore have a much higher tolerance to much higher doses) with the fact she was on them so long that they just had to keep increasing them every time she became used to them, meant high doses. so they are weaning her with methadone and ativan. every couple of days they decrease one of the meds. and then she spends lots of time that day crying, agitated, and sweating in ways i've never seen anyone sweat before, and often it's a cold sweat. it's one of the hardest things to watch as her mama. she is sometimes comforted by me holding her with her head sort of hidden in the crease between my arm and torso. and sometimes, holding her, putting her down, rocking, swinging, and anything else you could imagine all just make her more irritable.
we still don't have a release date or projected time line. whenever they make changes they talk about it needing to be what we can maintain at home, but i refuse to ask for fear of disappointment. instead, i live knowing we are well past the halfway point, and we are moving closer everyday.
our prayers request for right now are: shilo's narcotic wean, eating by mouth again, and oxygen wean. also, abigail has been having some weird night time issues. she says she isn't having nightmares, and that she's not scared, and so we are at a loss for what is causing the issues. so please pray for her to have peace and comforting dreams.
i will try to update again soon, but honestly, i don't have tons of down time, and i don't get tons of sleep. so just know that no news means that we are still doing well.