Well as most of you saw from Facebook, I changed the whole trach yesterday (with the assistance of our teacher!) But today Tom and I did it ourselves while Chuck watched and gave a few suggestions! Tom was the "do-er" and I was the "helper". I'm sure it will get a little easier every day, but I have never been so nervous in my life! And my face gets sooo red when I am nervous!
The home ventilator came today! It got all checked out and will be hooked up tomorrow. It is actually the one that we will be taking home with us. Chuck got us all excited saying that TIC requires that a child be on the ventilator for 7 days without and changes so Fiona could possibly be out of the hospital by the end of next week! Well as soon as he got done telling us this one of the doctors came in and said there was some changing of the plans. They want OT (and maybe the speech therapist?) to come do their assessment to see if she is ready to bottle feed and get her doing that before they consider sending us to TIC. Hopefully she catches on REALLY FAST and we can get out of here! They previously told us that they don't send babies home with feeding tubes so she would need to be bottle feeding before we could go home. But today it sounded like if she didn't get the whole bottle feeding thing that they would have to consider sending her home with the feeding tube. I don't know if they just like to change their minds a lot or if Tom and I misunderstood?! Usually if a baby isn't able to bottle feed, they put in a G-tube, which goes directly into the stomach. But because her stomach is in the O, she is not a canidate for a G-tube. So she really just needs to take the bottle and like it, haha!
She is doing pretty good with getting in and out of bed. Most of the nurses are now comfortable with Tom and I getting her in and out by ourselves. She is doing really good with tolerating being on her back. She can't be there for huge amounts of time, but she is definitely making progress. We would like to get that head reshaped, haha!
Meg,
ReplyDeleteFirst of all a very belated Happy Birthday!!
Fiona looks beautiful. I am very impressed with all that you and Tom are able to do. I would have a very tough time of it. All of you are in my thoughts and prayers. I told the tailor that we go to about Fiona and every time we we go there he asks me how she is doing. He said that she is in his prayers. So, in addition to family and friends there are also many others who are sending good thoughts and prayers your way.
Lots of love,
Aunt Di
I am so happy for you guys! I know how hard it is to deal with having your baby in the NICU and the omphalocele...so glad you are getting to take Fiona (still LOVE that name) home soon!!
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