My Sweet Baby Boy,
In less than a week we will put you in a little hospital gown, I’ll kiss that sweet perfect forehead of yours and physically hand you over to the hospital to operate on your skull. Your perfect, tiny, skull that grew inside of me. That little skull of yours decided to close early though and to make sure your brain has lots of room to grow, they need to open it back up. You have Craniosynostosis which means “premature fusion of an infant’s skull”. Specifically you have Metopic Synostosis with Trigonocephaly. This means the front suture from your soft spot to your nose closed before it was supposed to and that now your head is shaped a bit like a triangle or an egg.
Thankfully, because God brought us to Cincinnati you will be at one of the top Children’s hospitals in the country and you have some pretty great doctors. They recommended an Endoscopic surgery be done as soon as possible and then they said you would need to wear a helmet for the next year to help shape your head properly. We had another option too but God gave us peace that this was the very best thing for you even if it would be hard for all of us. So now we wait for everything to change in just 5 short days.
As I lay in bed nursing you in bed in the middle of the night I run my fingers across every bit of your head. Memorizing the way it feels, swirling around your little bit of hair, and trying to soak it all in. When you fall asleep on my chest your head tucked beneath my chin, I nuzzle your head in closer and take deep breaths in. Every time I hold you, I plant a thousand kisses across your head. Sometimes my emotions overtake me and the tears spill down my cheeks on to the top of your head and I wonder if you’ll ever know how many tears have been shed over that little head of yours. We know this is what’s best for you and you’ll never remember having surgery or spending the first year of your life in a helmet, but oh your momma & daddy will.
I wonder how I’ll respond when strangers make comments about it whether rude or kind. I hope I can be gracious. I’m concerned you won’t sleep with the helmet on and we will have many more sleepless nights. I’m desperately praying it doesn’t affect our breastfeeding relationship and trying to accept it won’t be quite so cuddly or comfortable anymore. I know you’ll be extra hot, sweaty, and sometimes stinky as your little body tries to adjust to the heat of the helmet and I just hope it doesn’t bother you too much. I worry about so many things. What if it takes you longer to sit up? Crawl? Walk? These are are the thoughts that fill my mind.
I’m sad. I’m sad your precious head shape will be changing. I’ve read it can change your “look”. I’m sad to think of your precious little head having a scar and it never being the same perfectly smooth skin again. I’m sad I won’t have endless access to cuddle and kiss your head. I’ve dreamt of this cuddly baby stage for so long and now I feel like it’s being stolen away from me…from us. I’m scared. I’m scared something will go wrong or that you’ll need more surgeries in the future. I’m scared you’ll have bad swelling and I won’t recognize you. I’m scared you’ll cry in lots of pain that I can’t take away.
But this motherhood thing is so much more than cuddling babies…so I’ll pull myself together for you. I’ll love you fiercely, I’ll pray without ceasing, and I’ll hold you close as you fight this battle as such a tiny baby boy. Soon this year will be over, you’ll be helmet free, and running around as a growing little boy. One day we will look back on this first year of your life as a distant memory. For now we will continue to trust in the Great Physician and soon we will be on the other side.
Be brave my little one, Momma loves you.
Baby H will have surgery at Cincinnati Children’s on Monday 5/22. Please pray for us as we prepare for the surgery, that the surgery would go well, and recovery would be smooth. Also, these pictures are from his newborn session that I’m just getting around to sharing. They are perfect & we LOVE our photographer – we just captured some more images tonight that I can’t wait to see.