I was up all night thinking of you. I thought I had finally come to a place of peace and acceptance, but I realize that place will not come until you are here in our arms. I have been praying every day for God to lead us to make the right decisions for you. I thought that we had it figured out, but I am so filled with doubt that it is consuming my every thought.
I was just told about a family whose children had Jeune Syndrome. It is a genetic disorder that is characterized by most of your symptoms. In my mind, I had ruled out the thought of your condition being genetic but now I am starting to worry that it is a possibility. I had also put it in my mind that you would have no more than an hour of life after your birth. I am starting to doubt that as well.
The family had the titanium rib surgery for their first son about 12 years ago. He never left the hospital, but he lived for two years. They chose not to do it for their second son, and brought him home instead. He lived for 4 months without intervention.
What if you take a breath? What if we could actually bring you home? At what point do we draw the line between causing you to suffer and saving your life? I wish that you could tell me what you need baby girl, but it’s not that simple. I need a sign to show me that we are doing the right things.
I know that we have excellent doctors and I don’t doubt their ability to do their job, but what if?
I love you so much,
27 week belly