At our 4 month checkup I was nervous, as all moms are, about my poor little man having to get his 4 month shots. Little did I know that would be the least of our worries.
Our pediatrician briefly said I think we need to set up a ct scan to test for Craniosynostosis … but its just precautionary. I thought CRANIO … SYN .. OOO… WHAT?! But it really didn't even phase me. Precautionary I reminded myself. I couldn't even imagine anything would be wrong and was positive it would be nothing.
Much to our shock the results came back that his front sutures had closed prematurely and he was diagnosed Single Suture Craniosynostoses Trigonocephaly (Metopic synostosis). At first I couldn't even pronounce it much less wrap my head around the fact that our idea of "perfect" had been changed forever. We were rapidly doing research and finding out everything we could about what our future held and what this meant for Hudson.
We found out our baby was going to need a invasive reconstructive surgery on his skull to allow for his brain to grow.
Within a week we went through a cat scan, met with plastics surgeons, an Optometrist (to make sure there is no pressure on his brain which there isn't), found our Craniofacial Surgeon and got the next steps started with scheduling his surgery!
What a week!
Now we are focusing on the next steps to prepare us for surgery which will be in about 6 months. It will be a roller coaster I am sure. But it makes it easier waking up to that gummy face grin everyday and having someone so special to remain strong for.
Love,
Matt and Jeanette
