We found out shortly after Rachel's 4 month check up that something very rare happened. The top of her skull has already fused. This doesn't threaten her life or anything, but it will need to be reopened to allow her skull to have normal growth as she grows. This is the most common suture to close early, but like I said, it very rarely happens.
Yesterday we met with a general neurosurgeon in Sioux Falls. He said he could do it, and has done it, but not often. The main problem is that Sioux Falls doesn't have a team of pediatric surgeons, anesthesiologists, etc. to handle any difficulities that might come up.
He assured me this isn't considered a big deal; it's not a tumor, there is a covering protecting the brain and they will only be working on her skull . . . all things I knew, but still good to be reminded.
We decided, given the lack of a peds team in Sioux Falls, to be referred to Mayo Clinic in Rochester. They are considered the best of the best. We will find out in the next couple of days when our appointment will be. The best time to do this surgery is by 6 months of age or so and Rachel just turned 5 months.
After leaving the neurosurgeon's office yesterday, we both felt really confident about things and we thankful that the surgeon was so honest with us so that we could follow God's path for us to the best possible team of doctors. We are going somewhere where they perform this surgery on infants quite often and I kept reminding myself of what he told us.
But, this morning at 3:30am when I got up to feed Rachel, I could help but feel a bit of panic. They're going to do WHAT to my baby???
I AM so thankful that this is a treatable condition and that they have been performing this type of surgery for decades. I AM thankful that it isn't her heart or kidney or brain or something that isn't treatable.
Back in January, I posted that we have to "enjoy or endure" because nothing lasts too long. Since then, it seems most of life has been enduring. It's been rough. I just want to get to the other side of this. The side where these doctors (and people who have gone through this) tell me it's going to be OK and that we won't have to do this again. The side where I don't have to think about sending my baby in for surgery, no matter if it is considered rather minor or not. The side where I'm not fighting back fear every day.
But, then again, maybe that won't ever completely go away.
I AM a Mom, after all.
Thank you all for your prayers!
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