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.
Dr. Carballo was Bree's neonatalogist too! Oh I loved her...and still do! I have no idea the PCH NICU has a "group" that gets together. Do you have any information you can share with me on it, or can direct me to someone? I remember many families from our stay, and many nurses, doctors, therapists, etc. Would love to be able to "show off" our Bree!
ReplyDeleteBoth my daughters were in the NICCU, and I've always wanted to go to one of those meetings for the people who still have their babies there, so they can see how big and awesome they both are. Because I know that would have helped me when I was waiting for mine.
ReplyDeleteTasha, I can give you Dr. Carballo's email address if you email me. This get together was specifically for babies who had brain cooling. I don't know if they have NICU reunions...but they should huh?!
ReplyDelete