Of course...

So of course after I had written how good Fiona was doing something happened. Nothing major and she is still doing good. We noticed that Fiona had been getting fussy a lot more than normal and that she was sleeping a lot. We thought that something was wrong, but we just weren't sure what. For about a week she had been having a lot of trouble pooping. Almost every time she went she got VERY mad and her heart rate and oxygen would drop and then once she went she would be fine. It would just take her a little bit to recover from that and she would breathe really hard... and we just thought it was because she was having so much trouble going. So we asked if there was anything they could give her to help. They said that since she was going there was nothing they could do about it. It was just because she had to work so hard because she doesn't really have abdominal muscles where they should be to help her push so it takes a lot out of her. So we just said ok and dealt with it because there was nothing else for us to do. Most of the time these little episodes would last 1/2 an hour to and hour. Well Tuesday night she was having one of these episodes but it lasted 4 hours and we just could not get her to calm down. Usually her oxygen is around 30-40% and that night we had it up to 70% and her oxygen level just kept dropping. So finally the nurse called the respiratory therapist and had him come take a look at her. Anyway, it turns out that the problem was the ventilator. I won't go into the specifics, but it wasn't giving her the pressure support that she needed when she was taking breaths on her own. So the poor thing was go tired and mad because she was working so hard to breathe. So they put her back on the hospital ventilator and we could tell immediately that there was a difference. She was so much happier and her breathing was back to normal. They ordered us a new home vent which is an older version. The one we had was the newest one and most of them hadn't even seen it yet! They are planning to get her onto the new one on Monday. Usually a baby has to be on the vent for a week before they can go to TIC, but since she has been on all the same settings and is stable they are pretty sure that we will be able to go there on Wednesday! YAY!
Tom and I are at home right now. We are trying to get everything ready for her to come home because once we go to TIC we won't be coming home til we bring her home! Tom put up a railing upstairs and a handrail going up the steps. Toni, Boo, and I cleaned and rearranged the bedroom and living room. We had to set her crib up in our bedroom because she will be sleeping in there for awhile. Probably at least until she is off the ventilator. We had to make sure there was enough room for everything and we have a pretty small bedroom! I guess the home care company that we are getting all of her equipment from has to come inspect our house and make sure there is adequate room for everything and that all of the electrical stuff is ok since we have so much stuff that will need plugged in. We had a lot to get done and still didn't get it all done so Toni and Boo and my mom and dad are going to come do the rest. I don't know what we would do without them!