Dr. R came in after reviewing Bailey's echo. He confirmed that she did have a complete AV Canal defect, and she would require open heart surgery. However, we'd have to wait for her to gain more weight before they would perform the surgery. He said they usually do the surgery when children are 4 months old. He said this heart defect meant she had a large hole between the chambers of her heart, and one heart valve. When he left, we just held our little girl and told her how much we loved her.
This was supposed to be a time for celebration, and I don't believe I smiled during that time. We had a few visitors at the hospital, but it was difficult for any of us to find the right words. We were very honest with everyone. We weren't ashamed of Bailey, but we were very scared for her. During this time I'm not sure we thought much about Down syndrome. We thought more about her sick heart, and wondered if she would survive.
After spending 4 days in the hospital, Bailey and I were both released. They gave us instructions on what to look for if she went into heart failure. They said Bailey would turn blue, she would sweat, and become mottled. They gave us an appointment with Dr. R, and sent us home.
We arrived home and put Bailey in her crib. Her tiny body just laid there. I looked around her room and cried. This wasn't HER room. This room was for our normal child. This room was for the child we expected to bring home. The happy frog decor was for a healthy baby, and the baby I brought home was not healthy. I cried.
I felt so lonely during this time. Keith and I had each other to lean on, but nobody else understood what we were feeling. I felt ashamed for saying I wanted a normal baby, but I did. I didn't want to see her suffer. I didn't want to deal with open heart surgery. I also, didn't want to lose my baby. Was she going to die?
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