Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, September 8, 2012

There's No Place Like Home

HOME! It felt so good to carry Meagan right out of Children's and head home yesterday. I think she knew what was happening:

First post-op smile!

  We got home in the late afternoon.  She really slept for a good part of it, and then woke to eat.  She nursed great, and only minimally spit up.  I took her upstairs to get her settled in and warmed up a bath for her.  She finally had her first bath post-surgery, and she looked very relaxed. Not sure if she was "happy," but she was relaxed, and just looked content to be home.

It felt different washing her hair this time.  When Meagan was really overlapped, her bones were so far over each other, and fused so tightly, Meagan had no soft spot anymore.  She had no soft spaces on her head anywhere.  It was solid and very rigid/bony.  Now, there are several spaces in her skull where they have spaced the bones apart to allow for growth.  So the first time I put my hands on it to put some gentle soap in her hair, her head moved.  It is palpable and squishy in several areas.  It reminded me of when she was first born and her head felt the same way.

All the new little ups and downs of Meagan's post-op head

All of the craters are spaces where her bones were pushed apart. If I put my hand gently on these little 'craters', they squish very easily and move. The best way to describe it is it feels like pressing on a "waterbed."

I was very careful washing around Meagan's incision line.  It goes from ear to ear and the stitches should dissolve on their own.  The plastic plates and screws that are spacing her skull pieces apart should also dissolve over this next year. (Which is just fascinating and weird to me all at the same time).  Her incision is looking great though, and we only put a tiny bit of Neosporin on it after her bath to keep it moist.

The Neurosurgeon said to be very patient with Meagan's head.  He said of course from her cheekbones up, she is still extremely swollen.  That will subside over time these next several weeks.  He said as for her skull, it will "float" in different shapes over time.  Flat, crooked, pointy, protruded, sunken..just about any shape or angle.  But he said it will all even out over time as her skull can now naturally grow and expand as it should have been doing these past 6 months.  So we wait patiently and hope it all works out this next year.  There is a chance she could need a 'touch up' cranio surgery in the next few years if some of the spaces don't end up fully fusing when they are supposed to, but, the Neurosurgeon said this should be a very small risk since he chose to re-attach a lot of her own bone in "islands" and not just cut out a strip in one area.  

In the meantime, I'm very happy to say Meagan is doing well so far.  We have seen a few seizures, but, nothing new from her 'normal' existance.  Her pain is still handled fine with just Advil.  And she is slowly coming back into her old personality and quirky little self that we love so much.


  1. I'm so happy Meagan is home she will feel much better recovering in her own space. I will continue to keep her in my prayers :)

  2. Wow!! She looks amazing and I am so happy she is doing well! Continued prayers for a wonderful recovery!

  3. Love that top shot of her smiling. :) Thrilled that she is home and that you were able to give a bath already. I bet that made her feel so much better! I continue to pray for her and your family.

  4. I'm so happy you are all doing well!! Meagan is so beautiful and I can't wait to see how she grows into her new skull! Give her love from us and hopefully we'll see you soon!!! We are praying for all of you!