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, April 17, 2013

Getting to touch Mira for the first time!

They brought her in, and took her away within roughly sixty seconds. Today was the best and worst day of my life. I vented my frustrations about my poor treatment at this hospital, but that doesn't even compare, in any universe, to how heart wrenching it was to let them wheel her away from me. I got to feel the softness of her arm skin, and the light touch of her hair for a few seconds, and that was it. I couldn't smell her or hold her or feed her. Touching her and talking to her for those few seconds was one if the best moments I've ever experienced, but all too soon, the transport team said "Okay, we have to get moving now." and my world shattered. I took my hand off her skin and held my head to try to keep my sanity in, but it hurt more than any physical thing I was feeling in that moment. I tried to hold the sobs in, but I just couldn't. That moment, releasing her skin from my own so they could close her incubator and take her away, was one of the most difficult things I've ever done. Very few things actually hurt a person's soul, but that was one of them... it hurt my soul.
I held my head, I grabbed my chest, I tried to focus on the physical pain I was in to distract myself, but it didn't work, there was just no holding in that cry. I'm glad I got to see her at all! I'm glad I got to touch her at all... but I'm not gonna lie, I was really banking on getting to spend more time with her than a singular minute, and I was crushed when that was all I got... just a single minute. One if the best moments of my life, touching and seeing her, followed by one of the worst moments of my life, letting her go.



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