Journaling our Journey

After much anticipation Leah was born on January 17, 2008 after a fairly quick labor. We were all in awe of her sweet presence and her sisters loved coming to the hospital to meet her! We spent our first couple weeks getting to know her and settling into life as a family of five. Those 2 weeks were blessed and happy weeks....we had no idea what was waiting around the bend.


It was at Leah's 2 week well visit that our pediatrician noticed a slight bulge on the top left hand side of Leah's forehead. I had just noticed it a day or so before but thought nothing of it. Leah had been born with some swelling on her left side of her forehead with her left eye swollen shut.

Our pediatrician sent us to get x-rays. I was surprised....x-rays? He downplayed it saying just to be on the safe side. My oldest daughter was there and she got really concerned. I calmed her down saying that Leah was fine and that we were just getting things checked out. Since the imaging office was across the street and we didn't need an appt I went ahead and took her right over for the x-rays. I figured I wanted to know as soon as possible.

Leah did well while they took her x-rays. The women were surprised at how still she laid and didn't cry. They expressed what a sweet baby she was. I left there feeling good that we'd gotten it out of the way, starting to worry a bit but trying to think positively. I called Ken to let him know. He was out of town on business that day.

Our pediatrician called at 5:30 that evening saying that something was showing up and we'd need to take her to see a specialist....a neurosurgeon! He told me not to let that freak me out and gave me the name of a specialist that was covered under our insurance. He could tell I was worried and reassured me that it was best to get things checked out and he was doing what he would want done if it were his daughter. We later found out that this was our "craniofacial" doctor or plastic surgeon. This was the first time I'd heard the term "craniosynostosis." I had him spell it for me as I knew I would be googling it as soon as we hung up. This all happened on Monday February 4th....what should have been a normal 2 week well baby visit turned into the shock of my life!