This blog is the record of our journey through Holland, raising a special needs child.
For the Holland metaphor that appears frequently throughout this blog, check out our very first blog post, or read it here.
Our story begins here:
On October 4, 2015, I gave birth to a beautiful baby girl, Alexa. She wasn’t breathing, and had no pulse, but the doctors were able to revive her fairly quickly. However, we found out she had been deprived of sufficient oxygen for a long time, and she was rushed to NICU and placed on a ventilator on a cooling blanket. The cooling blanket induces a kind of medical hypothermia, which stops the brain from incurring further damage. We were told she had Hypoxic Ischemic Encephalopathy, or HIE, which translates to brain damage due to oxygen deprivation. After 3 days she was warmed back up, and and MRI found that she’d suffered damage to the entire brain. She was taken off the ventilator after 8 days, and when she was 8 days old we finally got to hold our baby for the first time. She was transferred out of ICU 9 days, but we remained hospitalized for a total of 26 days, while she was taught how to suck and swallow again. This began our journey in Holland.
When we finally brought her home, she immediately started Physical and Occupational therapies. In late January, she was diagnosed with Cortical Visual Impairment, and we added bi-monthly meetings with a developmental and sight specialist. On April 4, she was diagnosed with Infantile Spasms, a rare and serious seizure disorder that is generally associated with poor developmental outcomes. In mid-May, it was discovered she was also having 50-100+ focal seizures a day.
For more on Alexa’s first month in the hospital, you can check out our blog In Which We Craft a Baby.