So because Hirshsprungs disease was suspected, we met with the GI surgeon. He explained what Hirshsprungs was and told us Rylie would need surgery in two days, but before surgery they would do a biopsy to confirm. The surgeon kept saying" these kids "this and ""these kids "that referring to Down syndrome. All I could think of was, how did the baby that I carried for 9 months, who's ultrasounds were always perfect become one of "these kids".So. I signed all the consent forms for surgery.
The next day as soon as I walked in to the nursery, I was greeted by a smiling surgeon. He's said, good news mom-Rylie does not have Hirschsprungs. Praise God!!! It was a miracle! The surgeon said he couldn't believe it. According to her x-rays it looked like Hirschsprungs, but according to the biopsy it was not. So, no surgery for Rylie. As happy as I was that my little baby would not be getting surgery, I just wanted to know if she had Down syndrome. We were still waiting for the blood work.
We had a lot of support from family and friends. I didn't have a computer or Internet back then so, Alot of people were doing Down syndrome research for me. I was not to happy with what I was finding out. All I did was cry and pray, but I was loving my baby. Even though she was hooked up to a million wires I was still able to hold her all the time. I was amazed at how BEAUTIFUL she was. I just wanted to bring her home so bad. I hated the NICU. I was thankful that she was in the hands of good doctors and nurses, but I felt like they owned her and they wouldn't give her to me to take home. She still needed to be seen by the cardiologist any many more doctors. She needed a hearing test, eye test, and MRI. She was also being treated for Jaundice.
2 comments:
I have been tuned in to your story. It sounds very similar to mine, so it is hard to read without getting very emotional.
I also HATE hearing my daughter referred to "them" or "downs people" etc. It's almost like they are being put into a different category than other people and stereotyped from birth. Blech. I try to educate people as much as possible but sometimes it just gets to be emotionally exhausting.
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