DAY 56 and 57

I'm so sad. I was supposed to go switch with Monty at the hospital today to see my baby, but I feel really sick and couldn't go. I think that I just didn't get on top of a migraine headache soon enough. I hope it is that and I will feel fine in the morning after getting some rest and can go be with her. I miss her so much!!!

So, apparantly they have been able to wean some more on her vent settings as well as her blood pressure medication over the past few days. The antibiotics they have been using for her infections seem to be helping and keeping things at bay.

She has been more awake and fiesty again. She does not like her ET tube and is pushing hands away from her. That's my girl!

Tomorrow they are going to scope her G-Tube to see if they can find a reason why our first attempt at feeding her through it failed. Let's hope it produces an answer.

Friday we have a meeting to discuss with her physicians where we are at and what the overall plan is and how well they think they can get her. I don't like having these meetings, but this one isn't quite like going in "the room". It is still in that room, but more of a discussion instead of the gloom and doom talks we have had in the past. One of the topics will be at what point do we consider a trach. for her if she can't wean completely off her ventilator.

For me, the most important thing is to get her home. Even if being at home is not for a long period of time, and could possibly mean hospice, I just want her home. I want to be able to crawl in bed with my girl and hold her and try to enjoy as many moments as I can in the comfort of our home. Whatever it takes to make that happen, is what we will do! Not to mention, that over the years of doing foster care and taking in fragile children, I have seen the miracles of what can happen to children when they are out of a hospital setting and are with people that love them.

My son, Andrew, is one of those people. He had an extremely rough first year. There was one point of hospitalization that they were not sure he would make it. He was a very sick little boy. He went into a good foster home and shortly after into our home for permanency. Andrew had a broviac (a central line) for nutrition of TPN and lipids. He also had a G-tube. He was failure to thrive. Andrew is now a 7 year old active little boy with no central line and no G-tube. I am 100% confident it was the feeling of love and permanency that did it.

I am not unrealistic in that love will save everyone. We do not have full control and there are other plans for some of us to be brought home to God sooner than wanted. All of us are on loan. There is no forever. But, I can still have the hope that being in a good, loving home environment can make a huge difference because I've seen it with my own eyes.

So, whatever the long-term plan is for Faith....I don't know. I just know that for now, I want it to be that she can come home to us and give us the chance to see what happens. Keep Faith.