Craniosynostosis

Well, Monday was Belle's Six Week Cranioversary and she is doing great!

That being the case, a lot of people have been asking about the surgery so I've decided to finally just up and write about it. I've already talked about how she was diagnosed and what the process basically entailed here, so I'll just start at the surgery itself.

We were scheduled to go in for the surgery at 6:00 am (they like to do the youngest children first) so we left for Primary Children's early. This was nice because I wasn't allowed to feed her three hours before so she slept the whole time and didn't cry for being hungry. I did not like being there. I'm particularly sensitive to suffering children (that doubled the minute I became a mom) and this place was full of them.

After what seemed like a long wait they took us back to get her all ready. We met with Dr. Siddiqi (the cranio-facial surgeon), Dr. Riva-Cambrin (the neurosurgeon), and the anesthesiologist (whose name I don't remember), who went over the process with us again and answered any questions we had. 

Finally the anesthesiologist took her back for the surgery. Handing over our little girl was probably the hardest thing either of us have had to do. I'm just glad she was asleep.

They had a waiting room for parents where we stayed. I remember the wait being very long and at one point I went upstairs to use the breast pump room but looking back the wait seems extremely hazy. I remember nothing. Every so often a doctor would come in and have a quick chat with parents, some through different stages of surgery, some finished, and giving them some encouraging news about how their children were doing. All of them just approached the parents in the main room, but when Dr. Siddiqi came in his face was unreadable and he asked us to join him in one of the private rooms. I was panicking, I knew something had gone wrong.

Belle with her surgeon, Dr. Siddiqi

When we got to the room he just smiled and said "Everything went perfectly!"
He gave us some tips on what would happen next and how she would do for the next little while and how to take care of her. He told us they'd call the receptionist when they were ready for us in recovery and I feel like that took forever. But finally she called us and I went down first (only one parent was allowed in at a time). She was still pretty sedated but every once in a while she let out a single, dry, weak sob and a few little tears spilled out of her eyes. It was the saddest thing I've ever seen and very hard.

I sent this picture to Stephen before we switched and he came in to see her. I don't even like looking it.

After that they wheeled us up to her room where she slowly started to wake up. I could tell she was in a lot of pain, so we started her medicine regimen (tylenol and oxycodone). The first day was very hard, she was so unlike herself. We had to move her very carefully and every time we did she would cry.

By the way that's iodine on her head not blood...

She slept all night even though we didn't. First of all we were on a very tiny and uncomfortable strip of rubber padding trying to wind ourselves around each other enough to fit and second, well...

We WERE in a hospital after all... I finally got a few hours when Stephen gave up and just sat in the equally uncomfortable chair for a while. When I woke up and realized he was there I made him get some sleep as well and he said he felt like a bad husband because every time someone (the nurses, lactation consultant, resident, etc) he was asleep!

Anyway the important thing is that by that morning Belle had made huge strides. She was acting like her old self and she was no longer in as much pain. She was even able to breastfeed like normal instead of bottle feeding! By 2:00 that afternoon they came in and told us she was ready to go home.

We kept her on her medicine regimen for about a week, but we only gave her the oxycodone for a few days on the regimen and as needed from there because it made her really sleepy...

About a week or so after her surgery she was fitted for her helmet and we got it about another week later. They warned us beforehand they had to cut it big so she could grow into it and not be uncomfortable, but MAN that thing was like a fishbowl!

We started getting her used to the helmet bywearing it off and on every other hour, the second day was two on, one off, the third day was four on, one off, the fourth day was eight on, one off, and finally we phased her into twenty three on one off. She has gotten used to it now and has filled it in a bit. It's a bummer covering up all her cute hair but at least her skull will be shaped right!

Long story short, Belle is doing Great!