Today we had a Medical Care Conference with the doctor, resident nurse, social worker, and another person. It wasn't what we expected. We didn't come out of the conference with very much more information than we already had. From what we have gathered we don't think any of the doctors here have seen a case of Charge syndrome so all that they know is from books right now. After tomorrow we will be going to Children's Mercy in Kansas City for most of the doctor appointments.
We were able to make some decisions on the medical care of our little Hannah, and so our new life begins. . Tomorrow at 8:30 she will be having surgery, which is the start of several too come. She will be 8 days old. They will be surgically placing a gastric feeding tube in her which is placing a tube directly into her stomach. They will then remove the feeding tube that she has in her mouth and this will help her live a more normal life. It seems to be a simple procedure but none the less it's a surgery.
She will have to have this feeding tube for several months. We are hoping that after her heart surgery that she will be able to have better success nursing or feeding from a bottle.
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7 comments:
You guys are so amazing. We're praying for you and sweet Hannah.
Sam and Rick, Hannah is beautiful! She is blessed to have such an amazing and loving family. We will keep her in our prayers!
Love
The Rogers
Your faith is inspiring to me. You are in our prayers and in many other's prayers back here in the university ward. We miss you. Take care and give your beautiful daughter our love.
You are such a strong example of faith. I am so happy Hannah was blessed to come to your family. We will pray for a successful surgery tomorrow and continued success in her treatment.
Our prayers are with you. We wish and hope the best for little Hannah as she undergoes her surgeries and for you her wonderful parents as well. I hope you feel all the love and comfort you deserve from your Father in Heaven. Best Wishes!
What a beautiful baby. Know that our hearts and prayers are with you all. You show such faith and strength.You are a wonderful family, a great example and we love you guys.
i stumbled across you form cristal and evas blog i am a charger to and i know im in ur archives LOL jsut wanted to say hey
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