December 31, 2010

Our Journey to the DOC Band

I think it all began when my water broke.  It was approximately 17 hours later, including two and a half of pushing, before our little baby boy was born.  I think the whole birthing experience was less traumatic for me than the being birthed experience was for our little bundle.  It may have been even MORE traumatic for my husband who proclaims that Jacob was born with two heads.  It seems slightly funny now, but in the moment no so much!  Of all the things friends, family, doctors, and even strangers told us, nobody shared that the head of a newborn is something that may fit better into the world of the Whovillians than humans.  So, let me be the first to share with you that those cute little hats that newborns receive in the hospital are NOT to keep them warm and cozy, but rather to cover the unusual shape of their heads in the first hours of their lives.

Although Jacob's head shape quickly improved some of the bones of his skull still seemed a little more prominent than normal.  It wasn't until Jacob's second month wellness visit that my husband asked the doctor his thoughts on Jacob's head shape.  The doctor carefully examined our precious boy and then blurted out a huge and new word to us..."Craniosynostosis," he said.  The doctor had reason to believe that Jake may have craniosynostosis, a genetic disorder, and wanted to wait until our next visit to examine him further.  We went home and my husband quickly jumped on the computer researching, learning, and filling himself with information around this new word.  Googling could have been the dumbest and the smartest thing we did.  Dumb - because prayer is where we should have turned first (and soon did), Smart - because we educated ourselves enough to discuss our concerns with our doctor and make decisions for our child.  We decided that we would not wait until the next visit, but instead went back in shortly thereafter to discuss our concerns.  According to our pediatrician, the only way to know for sure if Jake had craniosynostosis was to run an MRI on his head.  One question that Neal asked the doctor, and that stuck in my head, was if there was a specialist that could just look at Jacob and know a definitive yes or no.  Although our doctor said, "no," my gut told me that Neal had found something in his research that led him to believe that a specialist was an option.  Our doctor shared the name of a plastic surgeon who would do the surgery if Jacob did have this and we decided that we'd like to talk with him before we moved forward with exposing Jake to the radiation that an MRI would allow.  Our doctor didn't have a problem with that and wrote us a referral.  We were heartbroken.  I remember walking into Target after that appointment with Neal and Jacob and we could not even shop.  We couldn't even bring ourselves to call and update our parents.

Several days later we were a helpless family of three sitting in the waiting room at the surgeons office.  We were taken into our room and waited a short time.  Before we knew it, two male surgeons dressed in scrubs walked in.  Jacob was sitting on my lap.  In silence they walked from my left to my front to my right just looking at our son.  They then talked very low to one another as they looked at him closer; never acknowledging Neal or myself.  Finally, they sat down and began to show us where they were seeing abnormalities in Jacob's head growth.  They would (in their opinions) contribute this cause to lack of tummy time and would confidently suggest a DOC Band and more tummy time!  Yes, they could tell by just looking at our innocent boy.  They had no concern that Jacob had Crayniosynsosis!  First came shock and once that wore off we found ourselves relieved and abundantly grateful!

December 29th, Jacob finally got his band.  AKA to the uninformed as a "helmet".  That includes me.  I always called it a helmet.  Getting the band was a process of pictures, digital imaging, and fittings, but we are now the proud owners of a baby with a band!

I learned allot of things from our experience.  One is to be confident as a parent.  Realize you know your child better than anyone, M.D., or not.  Second, is that each doctor, specialist, book and magazine does not agree on everything and no one doctor can always have the right answer so, seek many opinions.  ...and third, that it's important for us as moms to share our experiences - the good, the bad, the gross, the scary, and the embarassing.  Who better to learn from than other moms!

God has blessed us beyond our wildest dreams...