Well yesterday we were soooo anxious to get Faith home- after today- we don't want her home! At least not like how she is right now. Today Faith gave us a big scare. She had a hypoxic episode- she turned blue and stopped breathing. Fortunately her doctor was in the room when it happened, and she was brought back quickly. A number of different things could have happened; We've notice Faith has been really 'juicy' lately and has had a lot of secretions. We've also noticed a huge weight gain (which we all know is not like Faith). This means she is retaining fluid, which is making it difficult for her to breathe. After the episode an x-ray was taken and showed that her lungs looked hazy and full of fluid. A blood gas also reveled that she is not burning CO2 very well, which once again could be because of fluid retention. So her diuretics were started again. All of this could have caused her to gag and choke on her feeding tube, and turn blue- or it she could have been choking on her own saliva. Whatever it was it scared us to death. It also put things into perspective for us- yesterday we were discussing the possibility of sending Faith home with a nasal gastric feeding tube ( what she has now). They rarely send babies home with these because it is a huge liability and risk. After witnessing what happened today we realize that we don't want her home on a NG tube-because if what had happened today happened at home Faith would not have made it. :( So now we realize WHY Faith is there and she does need more time. Yes, this means a lot more time. It is sad because we are missing the summer with her, and we will have to go back to work in the fall, but at least this way we will ensure that we will have MANY more summers together, because she is in the best place that can take care of her needs right now.
Well phew, we are exhausted and are going to go chill out for the evening.
Please continue to keep little Faith in your prayers.
Brian and Jen