Sarah Saw Something - Charlie's Surgery Week

It was a year ago today that I first learned about Charlie's stroke and Craniosynostosis condition.  He was two days old.  I remember sitting in the NICU peering through the IVs and feeding tubes and monitors into the eyes and face of my sweet newborn thinking, "Please please please please please be okay.  Oh God, please."

A year has passed and now he's better than okay.  He's incredible.  

This week, Charlie had craniofacial surgery to separate the skull plates that fused prematurely due to his Craniosynostosis.  We checked into the hospital on Monday morning and a team of sweet angel nurses took Charlie from my arms and into the OR.  When the double doors swung closed behind them, I stopped breathing.  My husband and I left the room and headed for the elevators that would take us to a waiting room and I literally couldn't catch my breath.  Its the most difficult thing I've ever had to do.

When Jack and I were reunited with Charlie, we were awed by his transformation.  His face was still his own, but the shape of his head was so drastically different that it altered our perception of all his features.  How odd to fall completely in love with one face, only to suddenly be faced with a new one.  Charlie had weathered surgery beautifully and could now begin his recovery.

I knew that recovery could get ugly.  Most babies who undergo craniofacial reconstruction experience considerable swelling and bruising.  Charlie was no different.  He spent a day and a half with his eyes swollen completely shut.  Even in this condition, Charlie would smile and eat and relax in our arms.  His ability to trust, release and renew his own body is simply astonishing.

Many of you have written to me asking about the details of the procedure.  So here it is in a nutshell.  Nurses and an anesthesiologist got Charlie all hooked up and sedated.  Then they carefully braided back his hair to ready the skin for surgery.  As far as I can tell, they do this instead of shaving the head as a compassionate gesture towards the child and parents to reduce emotional trauma.  His neurosurgeon then made an ear to ear zigzag incision to expose the skull.  Charlie's craniofacial surgeon then drew little lines on the skull so that the neurosurgeon knew where to cut.  They separated Charlie's fused forehead and chipped it up into little puzzle pieces.  Then they took a smooth section of skull from the top if his head and replaced the missing forehead.  Then Charlie's craniofacial surgeon pieced the remaining skull chips into the open spaces to create a "normal" rounded skull shape.  Magic.  Then stitches.  Then recovery in the ICU.  Now Charlie's brain has room to grow without the threat of neurological damage and his skull will fuse naturally in late childhood just like other kids.



After only 48 hours in the hospital - start to finish - we were home with Charlie.  Charlie was healing quickly and showing all outward signs of stability and readiness for discharge.  We're now five days post op and Charlie is looking really good.  He still has some light bruising and swelling, but in general his surgery and recovery has been a resounding success.  The photo below was taken this afternoon, only 120 hours post op.  Miraculous. 

Thank you to all of you who have written encouraging emails, sent prayers and donated to Help Charlie Heal.  And thank you to the amazing guest bloggers who filled La Maison Boheme this week with beautiful outdoor dream-scapes.  This week reminded me once again that Charlie has an enormous community of support and love.  I am filled tip-top with gratitude.  Nothing but gratitude.

Yours,

Sarah