Nathaniel was born 16 weeks premature on December 30, 2016 and weighed 1 pound 9 ounces. On the night he was born he was transported by ambulance from Medical City of McKinney to Medical City of Plano. Over the course of the next couple of days we learned he had suffered a grade 3 brain bleed due his blood vessels being too small at the time of his birth. We were told that along with a grade 3 brain bleed that Nathaniel would likely have something wrong with him, but it could be anything from a minor learning disability to a life long impairment and only time would tell.
Five days after he was born we were awakened at 3:30 in the morning to phone call letting us know that his intestines had perforated and a surgeon was on his way in to perform an emergency surgery. They asked us not to come in but wait for his phone call. When the surgeon called he explained Nathaniel was too small and fragile for the surgery he needed. Nathaniel needed to weigh around 4 pounds, so instead of a single surgery he would have to undergo three surgeries on his intestines.
Weeks turned into months as Nathaniel got bigger and stronger in the NICU. We watched for signs or clues to try and determine if the brain bleed was going to have long term lasting effects. Everything appeared to be normal except that we would seldom finish a bottle, so in May of 2017 he had a feeding tube surgically implanted so that we could bring him home. On May 30, 2017 after 153 days in the NICU Nathaniel was finally able to come home.
As the months continued at home we noticed that Nathaniel wasn’t reaching milestones we would expect, but we continued to hope he was simply delayed due to how premature he was. In October we noticed that he didn’t appear to have control over his eye movement so we took him to see an eye specialist. She let us know that his eyes weren’t the problem and that the issue was with his brain and referred us to a neurologist. After seeing the neurologist we finally had our answer…Nathaniel’s brain bleed when he was born had damaged his cerebellum. As a result he has Ataxic Cerebral Palsy which will always impair his coordination, balance, and eye movement.
Although cerebral palsy is an unchanging condition Nathaniel is still too young to know for certain how severe his condition is and how his life will be affected. At 22 months old he can’t walk or talk and he is legally blind even with glasses.
Nathaniel has four therapy sessions a week and we can now see him trying to complete tasks even when his body won’t let him. He’s learning he has limitations and he gets frustrated when he can’t do what his brain is telling him to do, but he is a true fighter. He tries until his body is too tired to keep going.