I just wanted to post an update on Grace and her prognosis/plan. We are always learning more about what Grace's diagnosis means, and this is what we know as of today.
We met with two pediatric surgeons, as well as our genetics counselor and nurse. They confirmed with our fetal MRI results that Grace's encephalocele contains part of her cerebellum, but that there are no other known anomalies. Because of this, the probability of me delivering Grace full term and alive is good. Surgery to repair Grace's encephalocele will probably be soon after delivery.
One of our main questions today was what will Grace's quality of life be. After researching occipital encephalocele, I have learned that Grace could have severe neurological defects. Dr. L confirmed this. He said basically that Grace probably would not have much/any quality of life and probably would not know the world around her. Even though Chad and I were not surprised because of this news, it was still not easy to listen to it confirmed.
Our main prayer for Grace is that God will fulfill His purpose for her life...however long or short her precious life will be. That is our main hope. We will trust God to fulfill His purpose. Secondly, we are also praying that Grace would not suffer in her life. Because of this, the palliative team will be involved with her care. We are praying for wisdom with decisions for our baby girl.
I pray daily for a miracle (she is already a miracle!) and that Grace knows how much her Momma and Daddy love her. We love her so much. We choose to celebrate Grace's life.