Craniosyno...what??

For an explanation of how it all began, click here
Journal entry #2:
I must admit I was a little embarrassed about my lack of knowledge after learning about Mia's diagnosis.  But, give me a break... my master's degree is in sports medicine... odd head shapes were a little outside my territory.  They didn't stop me from reading every website and book I could get my hands on once I learned about her diagnosis.
Step one- I had to learn how to say it.  I teach medical terminology to my students every day... but come on!  This word had a LOT of letters.  Okay, so sternocleidomastoid and proprioceptive neuromuscular facilitation rolls off my tongue like nobody's business, but this was outside of my normal realm of vocabulary.  So, here it goes... CRANIO- SIN- OS- STOSIS.
Step two- what is it? why does Mia have it? what can be done about it? 
Craniosynostosis is a congenital (present at birth) defect that causes one or more sutures on a baby's head to close earlier than normal. Sutures are connections that separate each individual skull bones. The early closing of a suture leads to an abnormally shaped head.  Although the statistics vary from one source to another, craniosynostosis occurs in roughly one out of every 2,000 live births and affects males twice as often as females.  Mia's closed suture is the one that runs in the direction from her nose to the back of her head.   It is called Sagittal synostosis (scaphocephaly) and is the most common type. The early closing forces the head to grow long and narrow, instead of wide. Babies with this type of craniosynostosis tend to have a broad forehead.  It is not typically related to any other condition and they don't believe it is even related to heredity.
The symptoms include:

• Absence of the normal feeling of a "soft spot" (fontanelle) on the newborn's skull
• Disappearance of the fontanelle early
• A raised hard ridge along the affected sutures
• Unusual head shape
• Slow or no increase in the head size over time as the baby grow

Mia was definitely a very typical case.  Her soft spot was barely there, and you could see the raised hard ridge running down the center of her head.  And that forehead was pushed quite a bit foreword.  Thankfully though, her head growth has been good.  Once head growth slows down there is a increase chance of having intercranial pressure issues.  Mia's problem will be fixed early enough that we don't have to worry about that.
The only fix for craniosynostosis is surgery.  If left alone, she could experience problems with seizures or neurological development delays. 
Step 3- What will they do during surgery?  This is the question I get asked the most.  If you don't like reading about this kind of stuff, you might want to skip down to the next paragraph.  After anesthesia is administered, the neurosurgeon will cut a zig zag cut from ear to ear.  (They do a zig zag cut so her hair will naturally grow over the incision)  He will then remove the top part of her skull all while protecting the brain.  The plastic surgeon (Dr. Sargent) will then take over and reshape her skull and correct the closed suture.  The skull is then fixed back in to place and she is closed up.  The entire surgery lasts around 4 hours.

Praise God for modern medicine.  Praise God for gifted hands. 

As time nears to her surgery, my brain has slowly been shifting from medical to mommy.  I have seen numerous surgeries (open heart surgeries included) and helped hundreds of patients rehabilitate after those surgeries.  But now it's personal.  I'm not sure how I will do with it, but I know my God will give me strength.

Tomorrow is pre-op day.  We will be given a lot of information to digest tomorrow.  Pray that we won't be overwhelmed by all the news.  Also pray that Mia continues to stay healthy.  Surgery can't be performed on a sick baby.  Pray for big sister... she isn't quite sure what to expect (other than a few fun days with grandmother).  But I know her sweet heart will ache for her baby sister.  Her prayers for the last 6 months ALWAYS include "and please help Mia not to cry when she has surgery". 

Words cannot express how your prayers have lifted us up.  Keep 'em coming... they are appreciated and needed.