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.

Team Neuro-NICU...and the Yeti

This morning we attended the second ever (but our first) Neuro-NICU reunion. They had a theme "Team Neuro-NICU" and they made every brain-cooled child a jersey (red t-shirt) with their number on the back. Sadie's number is 47. She was the 47th baby to be cooled at Phoenix Children's Hospital, which has one of only 2 Neuro-NICUs in the country. (Let me clarify that many hospitals have the brain-cooling technology, but to be a Neuro-NICU your staff has to have special training and you have to have capacity to cool a certain number of babies and there are a number of other criteria you have to meet.)

I was a little nervous about going to this event. I was afraid it would bring back some tough memories...and it did. But the idea of showing Sadie off to a bunch of people who thought she was going to die was too hard to pass up! What I didn't expect to be so hard was seeing all the other families, families with tiny babies that are just starting out their journey. They are so thrilled and overjoyed with their little babies and excited they're doing so well...but behind those smiles there is a fear of the unknown, a fear I am familiar enough with that I can recognize it a mile away.


We got to see Dr. Carballo, the neonatologist who heads up the neuro-NICU. (I don't know why we don't have any pictures with her! Sad.) She is a wonderful woman who hugged I think, every single person who walked in that door. Even though she knows that this brain cooling saves these babies, she is still so genuinely happy for every family that she has helped. I remember her crying with us in the NICU, over the bad and the good. I remember feeling how much she really cared about us and about Sadie. What a hard and wonderful job she has.


We also got to visit with Dr. Blackham, she is the developmental psychologist that tracks Sadie's progress developmentally. She is also a wonderfully sweet woman. She is addicted to coffee and walks around in the sock feet, and I love her. She held Sadie a little and loved on her some. It was good to see her.


And we got to see Amy. We dubbed Amy the Neuro-NICU ambassador. She was as busy as a bee in that place walking around meeting people, swapping stories, and introducing people to others. At one point she was getting everyone's email/facebook information to start a group! She is so great.

When Sadie became an official graduate of the Neuro-NICU, she was given a little beanie baby of a polar bear wearing a shirt that says "NICU graduate." It's cute, the officially mascot of the Neuro-NICU is a polar bear...you know, because he's "cool." So there was a person there today dressed up like a polar bear. Only he looked more like a Yeti. Decide for yourself! Either way, he was a little creepy.


All in all it was a good morning. It was good to be there, I think it's an important step in the healing process (sorta like returning to Auschwitz...okay well maybe not that dramatic, but you get the idea!). Sadie did really well and kept her cool and of course she showed off her cute self like she does so well. It'll be good to go back next year and see how far everyone has come.