About Me

United States
My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.

Wednesday, January 30, 2013

Waiting for News


      The weekend of waiting to find out what was revealed on the sonogram was excruciating. I made many phone calls to my sister, Tammy, to discuss what was possibly going on. My mind went to spina bifida because of the way the stenographer focused on the spine during the sonogram, but I also thought of down syndrome because during our pregnancy with our son, we were told he had an elevated chance of having down syndrome. Dustin turned out not to have down syndrome, and I always thought it was just a fluke until this time. I then started thinking that maybe Joe and I carried genetic markers that created this outcome. These were only a few of the millions of places my mind went during the weekend of waiting.
     Monday morning arrived, and as Joe and I headed to the OB's office, I was anxious to hear what was going on, but at the same time, wanted to run away, as far as I could, and never look back. The mental and emotional struggle between needing to know what is going on with your child, vs. not wanting to have your worst fears confirmed is an internal battle that is difficult to explain.
     Nevertheless, Joe and I checked in with the secretary and waited to be called.

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