Ezekial C.
Arizona
Birth Date - July, 4 2011
Main Diagnosis - Tetralogy of Fallot with Pulmonary Atresia
THEME: Dinosaurs (Realistic only)
Quilt Deadline: 9/1/2014
Ezekial's Story
When I was 13 weeks pregnant, the perinatologist noticed a
cystic hygroma on our baby's ultrasound, on the neck. We were told this
could be many things. We did a CVS chromosome test which came back normal,
and the hygroma disappeared. We thought everything was going to be OK. At
18
weeks, we were sent for a fetal echocardiogram to take a closer look at our
son's heart structure, as a precaution. After a long ultrasound we were
called into the pediatric cardiology office and told the news: our baby's
heart was far from normal, and he would need surgery when he was born. It
was a painful blur, but we prepared the best we could. After a complicated
and hard pregnancy we have birth at 36 weeks to Ezekial. He was 4lbs 9 oz.
and his oxygen saturations were sitting in the 60s. He spent five days in
the NICU and was transferred to Phoenix Children's Hospital. He had his
first
open heart surgery at 8 days old. Two more followed, at 5 months old, and 19
months old. He will continue to need surgeries throughout his life.
In addition to congenital heart defect/disease, our son was "failure to
thrive." He has severe reflux, chronic vomiting, and slow gastric motility.
He is allergic to gluten and milk protein. From birth to 11 months he was
fed by NG tube and pump. He now has a G tube and feeding pump which provides
all caloric intake.
He has had two surgeries apart from his three open heart surgeries; one for
G- tube placement and an open Nissan fundoplication, and one for removal of
infected chest sutures. He has also had two cardiac catheterizations and
multiple other invasive and noninvasive tests.
He has spent half of his short life in and out of the hospital, and has had
well over 100 IV pokes. His veins are completely scarred over and he is a
very difficult stick. He has multiple other diagnoses, but he is a happy and
tough kid. While he doesn't enjoy hospital stays, he is well accustomed to
them. We've even spent 2/3 Christmases in his lifetime in the hospital.
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