Options - March 6

Baby Girl was a sleepy girl today! The nurse said she woke up at about 7, fell asleep for a little bit before I arrived and then woke back up. She worked with PT this morning (and didn't fuss at tummy time!) then went back to sleep at about 10 and didn't wake up until almost 1! It was pretty fantastic to just hold her and watch her sleep peacefully.

Dr. G and I talked about our options today. Since the sleep study results came back as inconclusive (the CPAP didn't help her regulate her oxygen but there's no evidence of a physical airway obstruction) we have three options:

1) Do another sleep study with a few additional monitors and have the specialist there (instead of a technician who just records)

2) Have ENT re-evaluate and see if they change their mind about the surgical option to bring her jaw forward which would pull her tongue forward and open up her airway more, (this is what the surgery would entail) since they didn't think it was a necessary procedure before

3) Go ahead and move forward with calling the plastic surgeons to see if she's even a candidate for the surgery.

While C and I see the benefits of the surgery (it will open up her airway and could help her suck which would lead to more mouth feedings and less need for the feeding tube) the downsides far outweigh the positives right now (6-8 more weeks in the hospital, no guarantee that's what is causing the issue, another surgery + ventilator + anesthesia reaction + recovery).

Dr. G then says: personally I would like to continue weaning her off the oxygen over the weekend (she's on 1/8L right now...hardly anything), see how she does and then send her home with oxygen if we have to, or without if she's doing well enough. Give her a chance to really recover and rest and grow and then see how she's doing and what everyone thinks a little further down the road.

DING DING DING - we have a winner! So those were the options she left for me to take home to talk over with my husband (didn't take much talking to decide) and I'll visit with her tomorrow about our decision. She had ordered for Baby Girl to get her 2 month shots today, but didn't want to take the chance of a reaction causing any problems with the oxygen so those are on hold for now. They did a hearing screening (which the tech said they usually only do before discharging a baby...) and she did great in her right ear! Not so much on the left because she kept rubbing her head against my shoulder to knock the thing off her ear (they use electrodes to measure brain response to the audible cues) so they're going to run it again tomorrow while she's asleep.

The rest of the day was just spent sleeping and rocking :)