An unwelcome bit of news

We welcomed into our family a beautiful set of twins on the twentieth of January this year.  Two healthy happy babies all at once, with no NICU or complications is a truly wonderful blessing.  We expressed some minor concern to our pediatrician at their second booster shot visit about the shape of Josie's head as well as a difference between her and Elijah's soft spot.  The Doc thought we would keep an eye on things and we returned two weeks later for another look.  Things were not changed and so an inconclusive x-ray was followed by a CT which showed what we feared:  a portion of the plates in her skull have closed prematurely.  This condition is known as Saggital Craniosynostosis and requires surgery for correction.  Thankfully, Josie has had no complications (physical or developmental).  However, if left untreated the complications can be significant.

We went home and began exploring our options immediately.  Carmen had performed anesthesia on a few of these cases during residency at Children's Hospital in Arkansas so we were not completely unfamiliar.  The procedures she had participated in were all open surgery, requiring 7 hours in the operating room, mandatory blood transfusion, and 2-3 days in the PICU.  The surgery consists of a zig-zag incision from the top of one ear to the top of the other and the near complete removal, reshaping and replacement of the top of the skull.  Needless to say our blood was running a bit cold.  Then we found out about an endoscopic version of the procedure which was developed over a decade ago by a husband/wife team in Texas.  

For you non-medical folk endoscopic means "to see inside" - basically, anytime you have a procedure with "scopic" in the name (orthoscopic, thoroscopic, laparoscopic) the surgeon is using precision tools with lights and cameras on the end to preform the surgery through a very small incision or even a hole.  The endoscopic version of a craniosynostosis repair takes about 1 hour with minimal blood loss and is done through two, inch and a half incisions in the top of the scalp.  The procedure removes significant amounts of skull bone so that the brain can continue to grow unimpeded and the skull can knit back properly.  To protect the head and aid in shaping the skull a helmet is worn for one year following the procedure.  Two weeks ago we would not have been too keen on the idea of Josie wearing a helmet until her 18th month but that was before our other option looked like a 7 hour surgery with a zipper scar running from ear to ear.  At 1:30 AM after learning about this procedure we emailed the nurse to begin the process of getting Josie to San Antonio. 

Thankfully, after seeing her scans, the Neurosurgeon (Dr. Jimenez) confirmed that Josie was a good candidate for the surgery.  She will have the procedure on the 14th of July and with God's continued blessing we will have our happy, helmeted, beautiful little girl home by the 23rd.  We created this blog to serve as an information source to keep our friends and family updated as God takes us on this unexpected (by us, not Him) journey.  We ask for your prayers as Josie is held by her Creator as He works out His purposes in her and her parents.  

For more info:  

http://www.craniosynostosis.net/

2 quick videos can be found at the bottom of the list on this link: 

http://www.craniosynostosis.net/video-gallery/