Craniosynostosis

I've wanted to post these picture for a long time. Hazel was 3 days old when these pictures were taken. We had been calling her football head and hedgehog. I had no idea that something was really wrong until a neonatologist gave us a referral to see a neurosurgeon.

Craniosynostosis effects one in every 2000 babies born.

It's a deformity where the skull fuses prematurely.
















Hazel next to her identical twin sister.

Hazel getting ready for surgery.

Hazel's head looked different right after surgery.

One month post op. She had blisters from her helmet initially.

Hazel's head a few days ago at her nuerosurgeon's office. Six months post op.

Helmets, NG tubes and MRI's oh my

Yesterday was a busy day. We had a cardiologist appointment for Lucy and a neuro-surgery appointment for Hazel. At Lucy's appointment we learned that her oxygen saturation levels were really good at 88%. They'll probably do surgery when her levels drop into the 70s. As she outgrows her shunt her ox sats will drop. We also learned that she still isn't growing enough despite increasing her calories in her formula. Lucy is going to be admitted to the hospital on Friday so they can start her on a NG tube and teach us how to do it. Lucy might also need an MRI while we are there. After Lucy's last surgery she was put on ECMO for a short time. Because she was taken off so quickly no one did the usual testing that is done after coming off ECMO. They are starting to think now that maybe they should take an MRI to make sure things are looking okay. If they do this she'll have to be sedated and intubated. I'm not really feeling up for any of this.

Hazel's appointment went great. Her head looked great. I think these appointments with neuro are more for their benefit than for our. They like to take lots of pictures and document her progress. Today we're going in for another helmet fitting. This will be her 3rd helmet! I can hardly believe how fast time is going.