Birth Date: January 11, 2019
Diagnosis: Hypoplastic Left Heart Syndrome
Theme: Mickey Mouse Clubhouse
Due Date: August 1, 2022
When Elijah was born he was sent to the NICU for Hypoglycemia. He was small, a poor feeder and had an "innocent" heart murmur that we were not aware of until discharge at 6 days old. We followed up on the murmur at 12 days old and that resulted in an ambulance ride to Cook Children's.
We were told Elijah had Hypoplastic Left Heart Syndrome and needed emergency surgery. He was stabilized and had his first open heart surgery a few days later. The day after surgery he began seizing and we learned he'd suffered severe brain damage during surgery. His 2nd open heart surgery was only 2 months later and afterwards he developed Pulmonary Hypertension. He had feeding difficulties so had surgery to place a g-tube and something called a fundoapplication.
At 8 months old he developed infantile spasms as a result of his brain injury, the treatment for that weakened his immune system and he became septic from a UTI. He smiled for the first time during that hospital stay and he hasn't stopped since. He is blind, non mobile and very delayed, but most importantly HAPPY!
Elijah is now 3 and has had several other procedures and heart catheterizations. Normally there is a 3rd surgery he would have, but he is not a candidate. So we are just focusing on the present.
We received the quilt, it's perfect!!! Thank you so much!