Sunday, December 16, 2012

Neuro-NICU reunion 2012

When Sadie was born she went to the NICU, obviously. But she went to a special section, treated by specially trained doctors and nurses. Sadie went to the Neuro-NICU. Phoenix Children's Hospital (at the time) has 1 of only 2 specially certified Neuro-NICUs in the nation. This is where she was cooled.

Because this is a special place for special babies, they have a reunion each year to see all the cooled babies and catch up with them. Most of them are perfectly normal and typically developing. Sadie was the 47th baby to be cooled at PCH, so we were invited to one of the first of these celebrations, and it was there that I realized that our family was different.

At first I thought we must be really unlucky because most of these children were all going to be just fine, maybe they'd have a small swallowing issue that they'd grow out of, or maybe they'd be at a higher risk of developing seizures when they get older, but none of them were like Sadie. And this was really hard for me that first year.

So the second year we just didn't go.

We keep in tough via Facebook (I love Facebook) with the neonatologist who was Sadie's doctor in the NICU, and she kind of heads up the Neuro-NICU, so I told her last year that I just didn't want to come see all those beautiful typically developing children and know that mine has all these developmental delays and physical disabilities. That was kind of a dark time in my life when Sadie still wasn't sleeping and she was still screaming most days and always in the car, and I wasn't in the mood to go be around people who were living the life I thought we were supposed to have too.

But this year I've gotten past a lot of that. Sadie is happy, she is doing amazing things, and we've really gotten a handle on routines and are pretty good at managing her out in public. She also has a perfectly healthy and typically developing baby brother who has, and is, providing a lot of healing for our family. So, we packed up and headed over there. We visited with Dr. Carballo, who was filled with joy to see all of her cooled babies, not just ours. We sat with a nice family who has a 9 month old who is doing well. Then we took this awesome picture and went home.

By attending this year I realized exactly the opposite of what I felt last year. We aren't unlucky because our child is disabled. Instead we are lucky that our child is alive. Those kids at those reunions are there because brain cooling helped reverse the effects of oxygen deprivation at birth, and they are doing very very well...but I can't help but think of the families who weren't helped by brain cooling, the ones whose babies didn't make it. Really, we should have been in that category and not invited to these reunions at all. So I held my head high at that celebration and I proudly told people how Dr. Carballo saved my child's life, and how lucky we are to be able to be invited to celebrate the Neuro-NICU every year, because Sadie is alive. And she has taught us more about living and brought more blessings into our lives than we ever could have imagined.

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