Surgery Day

It was a long day, but we are through the worst part! The doctor ended up having to do the open procedure because the bone was so thick, so we were a little sad about that, but we feel like he made the decision that would be best for Everett. Needless to say, he is a very sad baby and it has been hard seeing him in so much pain. He is getting a blood transfusion right now, and looks much better because of it. He will probably swell quite a bit in the next 24-48 hours, but should be able to come home by Thursday. I can barely keep my eyes open so I promise I will write more and post pictures tomorrow! Thank you all so much for the prayers, thoughts, emails, and support. We have felt so much love and I know it has made me stronger through all of this! We are so grateful everything went well and his head already looks so much rounder! I have a newfound respect for surgeons. Amazing!

Labwork and my meltdown.

Yesterday was hard. I feel like I have kept it together pretty well the last couple of weeks, but the last few days I have been on edge. Then Matt called me and told me he was feeling uneasy about everything, and that did it. The string that was holding me together snapped and I fell apart. Unfortunately for my sister, it happened right before I got on the phone with her. Thanks for bearing the brunt of my stress JJ, I know you have enough of your own. Thank goodness for prayer and love from family and friends. By the end of the night I felt calm and peaceful again.
We went and got Everett's pre-op labs done this morning at the children's hospital. When I got there I walked past the oncology and cancer clinic. All I had to do was read those words and I promised myself I would keep it together from now on. Because what WE are dealing with is easy, and we are so BLESSED.

Although I will definitely need a box of kleenex when I have to hand my baby over to the surgeon. But please don't judge me for that.

One more day!

Blood buddies.

Everett and I gave blood yesterday. Well, he only gave a teaspoon, but it was awful. They couldn't find a vein so they were digging around in his arm while he screamed. Finally the guy gave up and got enough with a heel prick. Matt and I have to give blood and hopefully one of our blood types will be compatible with Everett's in case he needs a transfusion. I like the thought of him having our blood in him over a stranger's, plus it's one more thing I can hang over his head when he's a disrespectful teenager.

We are going to do the surgery here at CHOC. Dr. Muhonen is the chief of pediatric neurosurgery there and he will be performing the surgery. I talked to two very sweet moms whose kids had the same surgery Everett will get. They had nothing but wonderful things to say about the doctor, hospital, and nurses. It made me feel so much better about everything!

So, surgery is set for Monday March 15th at 8:30am. Everett will not be able to eat for 6 hours beforehand, which I am not looking forward to. The surgery should last about 2 hours from start to finish. He will stay in the hospital for 2-3 nights depending on how he's doing.
I can't wait for all this to be over and to see Everett's new and improved head:)

Desicion.

Thank you, thank you for all your wonderful emails, phone calls, comments, prayers and thoughts! We feel so loved and supported! I can not tell you how much they have helped! I wish I could be more on top of things and respond to all of them!

After meeting with the neurosurgeon again today, we have decided to go with the endoscopic version (limited CVR) of the surgery. We feel very comfortable with our decision and are so grateful that our pediatrician caught it early enough that we are able to do it this way. The surgeon said he usually does not get these cases until the kids are 1, and then it's too late to do the endo version. Right now surgery is scheduled for Monday, March 15th with a doctor here in Orange County. That's the plan for now, unless we decide to go with a doctor in Texas (Dr. Jimenez, he is the dr. who pioneered this type of surgery and has done tons of them). The only problem with Texas is we could not get the surgery done until April 8th and we know that the earlier we can do it, the better.

Here is an animated video of how the surgery is done.

After watching it, you can see why I am actually really happy he will be in a helmet, since half his skull will be gone! Especially considering his older brother seems to think if he can pick it up, it should be thrown. (Preferably at something breakable).
SO, that's the plan. Yikes, I'm getting nervous just thinking about it. Thank you again for all your support!

Choices.

I met with the neurosurgeon on Friday. He was really great, answered my many questions and reassured me that they do this type of surgery all the time. I felt so much calmer after talking to him and becoming more informed. He also gave us a choice to do the surgery one of two ways.

1. Endoscopic surgery, which is less invasive, has less scaring and blood loss and a faster recovery time. It is a relatively new procedure and this doctor has only done it 15 times, total. The downside to doing it this way is the surgeon can not see everything as well and it takes much longer to see results. Everett would have to wear a helmet 23 hours a day for a year.

2. Open surgery. In this procedure, they make an incision from one ear to the other and pull the scalp back to cut out the fused skull bone. Surgery is longer, more of a chance of blood transfusion, and a longer recovery time. But, results are immediate, so if he had to wear a helmet at all, it would not be for long. Plus the surgeon can see everything better during surgery.

The surgeon is leaving the decision up to us, which means we will be praying like crazy to feel peace with our decision. He also wants to do the surgery in the next week or two. The earlier the better. In fact they can really only do the endoscopic surgery until he is 3 months old. But he said Everett looks really healthy, and he has "really great tone for a baby his age". Meaning he is not a sloppy baby and has no signs of any of the genetic diseases that often accompany craniosynostosis. Also, his coronal sutures have not fused, so all in all it was a positive meeting!

Here are some pictures of Everetts head. His brain can not grow out, so it is growing front to back. It is textbook sagittal synostosis head:).





I love this picture with his cute little eye peeking out.

Diagnosis.

Our sweet baby boy was diagnosed with Craniosynostosis this week. Basically that means the sutures in his skull fused too soon and are causing irregular bone and brain growth. You can find more information on that here. We know his sagittal suture is fused and possibly part of his coronal. Tomorrow I will meet with a neurosurgeon at CHOC, they will run a few more tests, and get more information on his specific problems. Everett will definitely need surgery, probably in the next month or so. The surgery consists of cutting out the fused bone and reshaping the remaining bone, so the brain can grow and develop. Without surgery, the brain would most likely be damaged and the shape of his head would become more and more deformed.