We always hold back excitement. This does not stem from a lack of faith. We believe that God is capable of healing Hope completely. He could put a whole heart in her body as she sleeps this very moment. We hold back because of experience. We have learned that getting excited and having that excitement shattered, is very painful.
This morning Hope was taken for her liver ultrasound in the morning. In the afternoon I was told that it does not appear that anything has changed. The portal vein is still clotted and there are no obvious signs of improvement. I guess I'm hoping it was a bad picture and they're not 100% sure, but they never said that.
I feel like we tasted the beauty of Hope's future for a short time, but had it taken away once again. We will continue to pray that her life will be miraculously spared and that we will have the privilege of watching her grow up.
I feel as though I've been in and out of the hospital for the last two weeks. When Hope first went into the hospital I postponed everything and assumed I would rebook at a later time. After 6 months I'm realizing that I need to go to the dentist and all the other doctors in life. I have been booking appointments that are past due and trying to arrange getting everywhere I need to be. It's not easy, but it is nice to cross something off my to do list. I need to learn to live life with a child in the hospital and another one at home.
They were hoping to start Hope on feeds today but with some support from the staff, I convinced them not to. Tomorrow a friend will be having blood tests done to make her eligible to donate milk to Hope. In 1-3 days those tests will be back and we'll be able to start feeding Hope once again. I would rather wait the 1-3 days and give Hope breast milk than start her on a feed I expect to cause problems. I am deeply hoping this works and we can get out of the hospital!
I believe that God gives to us, but He also takes away. I pray that He gives us Hope and does not take her away. At the same time I pray that He takes away fear and doubt in my life and gives me faith and patience. Some days I come to God asking for so many things. I wonder if He feels like Santa as I go through my wish list. Yet, I also have so many things to thank Him for. God has given us children, something many families dream of. God has provided for all of our needs; I am not hungry, naked or cold. Although I have so many days that I beg God for a miracle in Hope, I also thank Him for each day I have with her.