Day 3....

Kate is not happy about being on the ventilator. The second her hands are free, they immediately go straight for the tubes. She knows all the naughty tricks : )
As you can see from the top picture, Kate really isn't taking well to being on the Vent. In fact, we are pretty sure that she HATES it. Today, they had to up her sedation again so she wouldn't fight the ventilator as much as she has. The problem is she has to come off sedation to come off the vent so it is a catch 22. We talked with a couple of doctors today and they didn't have the best news for Kate. They think that her Trachea might not be developed enough to support her growth which is why it is collapsing or closing. They have several options to help her maintain a competent airway. We will be discussing her on-going care in a conference Friday morning with a bunch of Kate's doctors. It will be good for us to get them all in one place at one time so we can get all our questions and concerns addressed and try to make an educated and informed decision about how best to address Kate's on-going health problems moving forward.
This new development with Kate could be because of her enlarged heart pushing her other organs and tissue out of the way, crunching her trachea in the process. Or it could be because her trachea is naturally weaker and underdeveloped. So there are many possibilities and it becomes very frustrating for us to make decisions about what is best for her care.

We remain optimistic about Kate's future. We continue to have faith that Heavenly Father has a plan for our little girl, and we continue to try and align with that plan. We are definitely learning patience and humility, and most of what we can do for Kate involves praying and being by her side. We are continually grateful for the health care facilities we have access to and are privileged to be able to take Kate to. The doctors and nurses have been so wonderful. However, we would much rather have her home with us : )