craniosynostosis update

It's fun to type out that long word up there. I have been practicing it with Henry. We think after "dada" and "mama" that his next words should be "sagittal" and "craniosynostosis." I told my mom's group yesterday that all along I thought everyone else's kids had funny shaped heads. (How was I supposed to know?) Turns out my kid's the one with the funny head. :)

We are probably going to schedule the surgery today, and we will let the world know when we have a date set. (All we know is that it will be sometime between July 26th and August 26th.)

Here's how the process will go. In the three weeks leading up to the surgery, Henry will receive 1 procrit injection a week, which will cause his kidneys to produce more blood.

During the surgery I believe there will be a pediatric neurosurgeon and pediatric hematologist in the room along with the craniofacial surgeon and probably some nurses, etc. (Praying that no one drops a Junior Mint in Henry's head during the surgery. J/K Any Seinfeld fans out there?)

They actually have some sort of contraption that will save the blood cells he loses during the surgery and recycle them back into his system. This is to prevent a possible blood transfusion. This doctor says that less than 25% of his patients end up needing a blood transfusion. We are praying that Henry will not need a transfusion. (Note, you can pray for that too.) If he does need one, we will get to donate our own blood.

The whole process takes a little less than four hours, but most of that time is spent prepping for surgery and then waking the little guy up after it's finished. His head should only be open for about 1 hour and 45 minutes. (Seems long to me!)

I have found a few blogs and forums by other moms whose kids have had the same surgery, and they say that one of the most difficult parts is seeing the baby after the surgery is over because they are hooked up to a lot of tubes, their head is swollen, they can't open their eyes, and they are in pain.

He will spend one night in the pediatric ICU, and then most likely, he will spend two nights in the hospital after that. Most of the blogs I have read say that their kid is happy and back to feeling normal by the second day! I can't wait to be at that point.

One thing we will be on the lookout for is clothes that button in the front. The doctor said his head will be very, very swollen for a week or two, and so most likely, we won't be able to fit his clothes over his head. Not sure I can shop for those in advance though... my sweet 3.5 month old is busting out of his 3-6 month clothes already! Will he still be in 9 month sizes by then? Not sure.

So that's what we know right now. In other news, a year ago this past Monday is when we first found out that I was pregnant... at which point our world (and this blog) changed forever! :) What changes a year can make!