Today’s post is Part II of a three-part story of quad micro-preemies. For Part I, click here.
I know that it is not always the case, but if I have come to believe anything about micro-preemies, it is their resilience in the face of difficulties and their amazing ability to adapt.
Our Timmy had bilateral intracerebellar hemorrhaging, lateral ventriculomegaly and a R-side caudate hemorrhage (which portends a high risk of cerebral palsy) that all developed by the end of his first week of life. When he nearly died (a couple times!) in the ensuing weeks as he struggled to recover from heart surgery and subsequent bowel perforations, we found ourselves in strange and uncharted emotional territory:
We wanted him to survive but weren’t sure that, if he did, his life would ever be anything close to normal. Perhaps, it would be better, we thought, if he did die – none of us wanted to see him suffer through a life of horrible disability. We were with our daughter and her husband when the NICU docs presented them with the choice to withhold care from their son – not an easy time as you can imagine. But none of us could shake the hope that, if given the chance, Timmy might not only survive but also live a happy life. Anne & Rob gave him that chance.
When Timmy was discharged from the NICU some months later (after 142 days, he was the first of the quads to leave!), the prospect of severe disability followed him. Shortly before discharge, he had undergone a complete brain scan to determine the extent of brain damage he had suffered earlier and to gauge what the extent of his subsequent disability could be expected to be.
The results were horrifying: Timmy was found to have virtually no cerebellum – it had been destroyed by his severe hemorrhage. That area of the brain controls so much of the body’s motor skills and coordination that it seemed the little boy would not have much of a chance at anything approaching a normal life.
When we challenged the NICU doc that Timmy had, in fact, been active and moving his arms and legs with zeal for weeks, the doctor’s sobering reply was this: “Purposeless motion is not the same as motion with purpose.”
But Timmy came home to a family that loved him unconditionally. He was the first of the babies to grab (and hold and hit and throw) his toys; the first to learn to clap his hands; the first to play peek-a-boo by lifting his hands to his face and cover his eyes, then dropping them with a big smile when we asked, “Where’s Timmy?”
He took a little longer to learn to sit by himself and his balance is not perfect but it gets better from week to week. And while he has yet to learn to crawl (Edda was first, then Lily, and shortly after her, Wyatt started to crawl!) he is working hard at it and we expect him to get going any time now.
Stay tuned for Part III! In the meantime take a peak into the world of these amazing quads – their family has shared a video taken recently of all four playing!