Saturday, August 06, 2011

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.



sweetbittertart said...

I'm so happy things are going so well for little Charlie! I can't imagine the week you must have had. Hugs to you and your family! : )

Olwyn said...

I've been quietly following your blog for over a year now (& enjoying it very much). Just want to send a stranger's greetings and very best wishes for you and your whole brave family. Thank you so much for sharing your journey. Hugs to all.

Römina said...

I always read your notes on Charly and the truth is that I was very excited because I have children and I can feel a mother seeing her son in the hospital, his operation was an amazing thing and see them happy, very lucky, from Argentina.

LauraJane said...

He's beautiful-- both before & after surgery. :)

Karena said...

Sarah thank you so much for letting us all know.

Your family is always in my thoughts and prayers and Charlie looks like he came through it all with flying colors. I can only imagine how scared you were for him!


Art by Karena

Audrey Regan-Speers (in Canada) said...

Congratulations Charlie! Take care of your mom and dad because I think this was harder on them than it was on you.


Anonymous said...

It is a terrible thing to send your child into surgery. I've been in your shoes. thank God is is doing well!

anita said...

You and Jack are amazing. Charlie is lucky to have picked you for parents.
sending you much love.

Isa said...

¡Hi Sarah! My name is Isabel and I write you from Spain. I just read your post and couldn't avoid sending a message. My niece was born also with craniosynostosis. She went on for surgery when she was six months old, and it was so moving seeing her face after the intervention. Just wanted to tell you that she's now a beatiful, completely sane 9 years old lady. I wish Charlie and all your family all the happiness in the world.

Ann said...

Thank you, Sarah.
Charlie's beautiful!

(I want to kiss those precious arms and cheeks!)

Laura Trevey said...

Hi Sarah,

What an incredibly moving and touching post ~ and so glad things are going well ~ the 1st image is magical...


Loretta Fontaine (APPLESandRUBIES) said...

Sarah- So beautiful to read this! Charlie looks just wonderful (before AND after!), and you are in our prayers!


Barbara said...

Brought tears to my eyes...I'm so very happy for you and your family! And bless those amazing physicians and nurses. All the best, sweet Charlie!

Troutwoman said...

Sarah, I'm thinking about your family, especially little sweet Charlie, every day. It was wonderful to see and hug you all. Now, I hug you in spirit.


A Perfect Gray said...

wow. what an incredible journey. he looks amazing, but then he was always beautiful, wasn't he..? wishing (you all and) charlie only healthy and happy days, donna

Miranda said...

This is the best news... the news we have all been awaiting. Thanks for sharing your family's incredible story. And hats off to the doctors and nurses as well.

Anonymous said...

I have been thinking about and praying for your family throughout this procedure. How amazing it is to feel so connected and empathetic to a family I will never meet, but your story and your words touched me and many others. You are obviously an incredibly strong person and an amazing mother, that little angel is lucky to have been born into such an incredible family. All of my best as you continue to watch your cherub heal.

Or, Israel said...

he's so brave, and so do u guys. he's lucky to have such loving parents and friends. i hope this will be another step towards normal life for u all with him.
much love, u're in my prayers.

Champagne'sCrushParty said... you know, I'm new here and I have to say, this is not what I expected to find under all this bohemian crushable lushness. I've reblogged tons of pictures, but am stopped in my clicking tracks here. What a beautiful family you are nurturing and what an amazing life changing journey you all must be on. Sometimes I click to follow a blog and just watch the picture go by, but I know I will watch for updates on this precious child and will put him and you in my nightly prayers. God works in mysterious ways and I have no doubt that your family already knows the love that this mysterious way brought with it. I wish we were neighbors, I'd come blow bubbles and play with y'all for sure! Much new love from over here. xoox