She has major oral aversion. I do not see her eating by mouth ANYTIME soon. She will not suck on a pacifier---she cant even touch it to her tongue without having reflux then gagging which sometimes results in throw up. She does this thing where she gags because her secretions are so thick, her whole face turns red, eyes roll in the back of her head and she tries really hard to hack it up but it gets stuck--and of course she desats. It freaks me out every time.
An ENT came and looked at her vocal cords yesterday because she still is not making any sounds when she cries. From what he could see her vocal cords did not look damaged to him but she was so swollen and inflamed from her acid and reflux that he could not get a really good look. So during surgery Monday they are going to see if they can team up and get a better look after she is sedated.
So here is a more detailed version of what is going to happen in surgery on Monday. The first thing they are going to do is run a camera/scope down her mouth to her belly and see what they see down there. They are going to all use their heads and see if there is a way to resolve the problem without making any incisions. That of course would be the optimal scenario. They may even decide to bypass the tummy and put in a feeding tube that would directly feed her intestines (from what I understand). In other words they are going to try everything they can to avoid having to cut her open and compromising her abdomen again. Of course either way she will have to be intubated which totally stinks. Hopefully she gets to come off the vent again shortly after but you never know!
She has has a few sessions of physical therapy. Some things she does well and others...not so much. That is to be expected when a baby has been in one spot for 2 months with very little movement. The PT is really nice and showed me some things I can do with her. It is kind of like play time---more fun for me than her. lol
So to sum it up we have been playing, gagging, cuddling, gagging, waiting for daddy to get here (FRIDAY) and gagging and throwing up some more.
|Merry Christmas Sunni! From one of her fav nurses, Rhiannon :)|
|I had to throw this in there because I got to see the Weenie Wagon for the first time IN PERSON! haha|
|Sleeping Beauty with her fav hat from Katy Cox :)|
|Physical Therapist (Shelly) singing Jingle Bells|
|BIG eyes! I see you!|
|All ready for Christmas with her bow from another one of her fav nurses, Michelle|
|Sweet, Sweet Sunni|