I just wanted to "thank you" all for being so kind about my loss.
I'd like to tell you a little about him.
My son, Blake was born 6/26/02 and he died 7/8/02. He was born @ 32 wks due to my PIH and a grade 3 placenta. When he was born, we found out that he had a cleft lip and palate. Later, after he had x-rays, we were told he had a spinal deformity where portions of his cervical and thoracic spine were crooked and they hadn't fused normally. That's not all-
-the next day we were told that he had a congenital heart defect : a VSD and double-outlet right ventricle. (they then started trying to say in a way that it was tetralogy of Fallot, but they weren't sure)
He did very well for a 32 weeker-the night he was born he was on O2 and the next morning he was off of it!!! No vent for us (at first)!!! He started eating like a little pig (through his OG tube)-I had to start pumping like a jersey cow!!! He did have the apnea that goes along with preemies, but he was put on theophylline for that.
At about his 8th day of life, he had to be put back on O2: we had jaundice, so in came bililights-he was on them for 1-2 days. His sats started dropping more each day, so up his O2 went.
By his 11th day, he was not doing well. We were told that his heart defect had gotten so bad that every time his heart beat it was shutting of blood supply to his lungs-his pulmonary arteries were small to begin with. He was flown to the university hospital where he was on the vent, drips, the works. He coded twice early the next morning. So after much talk with the docs, we decided that if he went downhill again that would be it.
When he started to decline, we held him and talked to him and then he was taken off of the vent while he was in my arms. He died a few minutes later.
I decided to post this because #1-I was asked to and #2 I need help.
We were told that it was possible that Blake had Trisomy 13-his chromosomal analysis came back normal. If there is anyone that can help-we would appreciate it very much. I have been to several sites, but can't find what I want to know!
Sorry it's long-it helps to "talk"
Thanks for "listening"