Deep breath - In my last post, I told everyone about the MRI and CT scans that John Robert had to go through a few weeks ago. The MRI scans came back clear (thank God), but we had to wait on the results of the CT scan. We went back on Friday for our follow up appointment for those results. They weren't good. Not what this Mama wanted to hear at all.
The cranial specialist informed us that two of John Robert's cranial plates have fused together causing his head to grow abnormally. He also explained that these plates are not supposed to close until a child is 2 or 3 years old. They move as the brain and the skull grow. If they're fused together, they can't move and obviously his brain and his skull can't continue growing as it should. The good news is: they can fix it.
Here's what the newborn skull looks like:
John Robert's metopic and sagittal sutures have closed prematurely. This is called: craniosynostosis. The sagittal suture closing is the most common, but the metopic suture closing is the most rare. It's causing his head to grow in a triangle like way. If we did nothing, eventually the pressure on his brain would be terrible and his poor head would be completely deformed. He could also have severe developmental delays (which we're already seeing). So....we don't have much choice but to go ahead with surgery.
It's a 5-6 hour surgery. He'll be in ICU for a day or two and then in the hospital for another 5 days. There will be 2 surgeons - a neurosurgeon and a cranial specialist. The neurosurgeon does the actual surgery while the cranial specialist takes the plates out and "reshapes" them, if you will. Then the plates are put back in his head and they close him up. So, yes...he'll be cut from ear to ear. A nice battle scar for sure. At least I won't have to worry about John Robert shaving his head later in life!
The recovery is the hardest part according to the doctors. There is a tremendous amount of swelling afterwards. Poor baby's eyes will be swollen shut and his head will look like a basketball for about a week. The doctor's say that there isn't much pain because we don't have nerve endings in our skull - which made me feel much better. However, the babies are hysterical because they can't see. This is the part that just breaks my heart to pieces. I'm already picturing what John Robert is going to be like after surgery. How scared he's going to be not being able to see me or Trey or anyone for that matter. It literally makes me sick to my stomach to think about.
I know we have to do this. I know we'll get through it. But, it doesn't make it any easier. I don't want my baby boy to have to go through this. He's been through enough already. People keep telling me that he'll never remember any of this and I hope that's true. Next year at this time, I hope John Robert will be running around like a normal toddler and chasing after his big brother.
Until then........ we ask you all for prayers for our family -
and especially for sweet John Robert.