Birth Date - July 16, 2012
Diagnosis - Trisomy 18
THEME: Sesame Street Characters
Due Date: 1/1/17
Ameir was diagnosed prenatally around 18 weeks gestation as having Trisomy 18. This occurs when there is an extra chromosome present as early as fertilization. It is not genetic and not predictable, just an "accident" of nature. Several doctors encouraged termination as the fetal anomalies are generally severe. I elected to carry him to term.
Ameir was born 7/16/2012 at 36 weeks and he was tiny, 3.15 pounds and 17 inches long. He wasn't breathing at birth so had a breathing tube put in immediately. At day 10 he was transferred to a larger hospital so we could make long term plans for his treatment. Ameir had the breathing tube removed and did come home at 25 days old on a little bit of oxygen and with a feeding tube.
When Ameir was 2 1/2 months old he caught RSV and was in very critical condition. He was airlifted to the children's hospital and not expected to make it through the night. Ameir was again intubated and spent a week sedated to heal. He wasn't able to wean off high flow oxygen so received a tracheotomy. He failed to wean off the ventilator, spent 77 days admitted, and come home on a ventilator.
The first several months home were tough. We had home nursing assistance 8-12 hours per day as someone had to remain awake 24/7 to watch him. He had several short admissions while we learned his new normal and adjusted. The first year was the hardest. The subsequent years have been quite eventful, with hundreds of appointments and therapy. Ameir has completed his first year of preschool.
"This quilt is amazing! It's so pretty. The first night he wouldn't quit trying to sit up and look at it. Tonight he finally let me cover him up."