First Post!!

At some point I will have to add everything I have been writing in a notebook since the day she was born, but for now I will just start with today and go from there! This will just be much easier than trying to cram everything in my Facebook status!

As I am writing I might use words and terms that most people aren't familiar with so I will try to explain them as I go.

Fiona has been pretty good today. She is at least staying stable for now. A lot of people have been asking me what they are going to do about her belly. As of right now the surgery on her belly is not even in the picture. They are much more worried about her lungs at this point. Obviously her belly is an issue, but it is not causing any problems at this point. It is nicely growing skin (which it is supposed to do). Eventually the skin will cover the whole thing. It is about 3/4 of the way up right now. The rest is covered with granular tissue which is what is needed to grow skin.

I will try to explain her vent settings. Right now she is on 36 bpm (breaths per minute/ how many breaths the ventilator is giving her). She also breaths on average 20-30 breaths per minute on her own. So her total respiratory rate is usually between 50 and 60. She is also on something called pressure support. I found this nicely described in another blog I have been reading. Our lungs are kind of like balloons. When the balloon is already filled up a bit, it is easier to put more air into it than when it is completely deflated. So what the pressure support does is keeps a little air in her lungs so she doesn't have to work so hard to take her own breaths. Each time they have tried to wean her off of the pressure support she does not like it at all. That is what has caused some of the setbacks. We are meeting with the Pulmonologists (lung doctors) on Tuesday to see if they can tell us anything about her lungs. The thing that sucks is that the ventilator is a viscious cycle. She needs to be on these high settings to keep her alive, but the longer she is on it, the more damage it does. Being on a ventilator long term causes CLD (chronic lung disease). Apparently your lungs keep growing until you are about 5, so her lungs will constatly be trying to grow AND heal themselves at the same time. Getting the trach will not really help or hinder the situation in anyway. It is just a more secure/long term solution than having the tube shoved down her throat. She is getting to the point that she realizes it is in there and gets mad at it. She has already pulled it out on her own once and we don't want that to happen again! She is a feisty one!

As for her feeds... she is currently getting 1 cc (or ml)/hr. A cc and a ml are the same thing. So she gets 24 cc's in a day, which is not even quite an ounce. She is doing ok digesting that, it just takes her longer than it would a normal baby. The rest of her nutrition comes from the TPN. It has all her vitamins, minerals, fats and whatever else she needs. They will lower that as they increase the amount of breast milk she gets. She would need to be taking about 50 cc's per feeding (every 3 hours) to be considered at full feeds. Once she gets the trach we should be able to work on bottle feeding (HOPEFULLY!) It is a good sign that she likes to suck on a binky so she doesn't lose that sucking reflex.

Well hopefully that gives everyone an idea of what is going on. I will try to update at least every other day (since I have to go to the library to use the computer) and post some pictures and videos! Feel free to leave comments and ask questions. I will try my best to answer them!