As far as days go, today wasn’t as bad as I had expected. We spent 8 hours at Medical City Hospital….lots of great visiting, several appointments, and a lot of waiting later…we are back at the hotel and ready for bed! I’m honestly too tired to write much, so here are some of the highlights.
We met our first Apert family in person today! We’ve connected with dozens of families online, but hadn’t met any in person until today. We LOVED getting to play with Salem! He’s full of energy and personality! It was so nice to talk with him mom and grandma and also with Stacy Horne, whose son, Seth, had surgery yesterday. We even ran into the staff from CCA (Children’s Craniofacial Association) while we were there. Then, this afternoon we got to visit for a little while with Margaret Dalton, whose daughter, Elizabeth is 8 and was at school.
Our next stop was Media, which is where they take pictures of all the parts of Callie Anne’s body that are “unique” They have already done it once before and will continue as she grows. This time, Daddy got to help with the modeling.
Then we went for registration and lab work. Callie Anne is NOT a fan of lab work and since she’s been having blood drawn every week for 3 weeks in preparation for surgery…she was not exactly cooperative today. Her nurse, Sally, even gave up on trying to get a blood pressure reading because she screamed bloody murder every time the cup squeezed her. Such a drama queen!!
Finally around 5:30pm, we got to meet with the surgeon, Dr. Fearon. He went over what would be happening before, during, and after surgery. Many people have asked what all this surgery consists of, so here it goes…
He will make a zigzag incision from ear to ear across the top of her head and pull down the skin to about the end of her nose to expose the bone. (don’t worry…that’s the most graphic part, so keep reading…) The neurosurgeon will make sure the dura, which is the outer most layer of the membrane that protects her brain, stays nice and wet while it is exposed. Dr. Fearon will cut the pieces of the bone needed to reshape and remodel the front of her skull and give room for her brain to grow. He will also use part of her skull to create a browbone (which she currently doesn’t have). He will use her own bone to add some to the bridge of her nose because when he brings out the forehead and creates the browbone to where it should be, the midface will appear much more “sunken in”. He will also “tweak” the corners of her eye sockets which will always tend to point down as her face grows. He doesn’t put in any metal or artificial pieces and will use dissolving stiches both inside and out. There will not be an helmet therapy or even bandages after surgery. However, there will be a LOT of swelling. We won’t know exactly how she will look for probably about 6 weeks when all the swelling goes down. The first few days will be the worst and her eyes will most likely swell shut…which will be terrifying for her, but we will do all we can to keep her calm. She will spend at least 1 night in the PICU and hopefully only one on the regular pediatric floor. If all goes well, she will be discharged on Wednesday! This guy has this surgery down and knows what he’s doing! She couldn’t be in better hands!!
This surgery will need to be repeated probably 3 other times as she grows to accommodate her growing brain and attempt to give her skull a “normal” shape and appearance. We also scheduled her 2 syndactyly release surgeries which will give her 10 fingers and 10 toes by Christmas! They will be Oct. 23 and Dec. 19. She’ll be in casts for both Halloween and Christmas. You KNOW I’ll be buying all kinds of awesome legwarmers and socks to cover those casts! (with matching headbands and bows, of course!)
So…that’s all for now. It was a long and emotional day, but overall, it’s all good. We know this is what needs to be done and we feel all the prayers coming our way. I’m still not ready for my baby girl to look different than she has for the past 9 months, but I’ll get over it. She will still have her amazingly sassy personality no matter what her forehead looks like!
Thanks for all the prayers! Enjoy the pictures from today