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, May 1, 2013

First Night

I'd be lying if I said anything other than "AAAGGGHHHHH!!!!"
It was crazy, and hectic, and wonderful in the type of way that makes you want to pull your hair out even though you wouldn't trade it for the world! That was our first night home with her. Joe and I were trying to unload everything, make sure we kept her schedule, set up everything she needs (which is when we realized or bedroom and her baby furniture is not arranged in a functional way for her needs at all), clean as we went so we weren't making more messes to clean up, oh yeah, and trying to keep our cool.
It felt so high pressure. Like if we didn't get every little detail perfect, the world was gonna come crashing down on us. Overwhelming is a word that I can't use enough to describe many parts of this experience so far. From confirmation on a sonogram, to bringing our spina bifida baby home; overwhelming is the overwhelmingly accurate word to use! She's so beautiful and strong, yet so mangled and fragile at the same time. I constantly feel the pressure of "what if I mess up?" and it scares the life out of me! That feeling had never been so strong until that first night home. In the hospital, you have the security blanket of the nurses and doctors and equipment. At home, it's just you. It's all on you, and that first night home was a night where that was the most forefront thought in my mind.
This little life, which seems so fragile, which has already been through more in her first two weeks of life than most people experience in an entire lifetime, this baby girl facing odds after odds, and struggles and triumphs; and she's counting on me. That first night, while running around my house and trying to get everything right, that thought is enough to knock the wind out of you many times over. But I'm also proud. I'm so proud of her, and I'm proud that God picked Joe and me to give this miracle to.
Joe said he thinks Mira was God's way of saying "get your acts together, there's bigger things in life." I think Joes right. There's no more sleeping in. There's no more procrastinating. Cleanliness is no longer optional. Irresponsibility is no longer optional. Being unorganized is dangerous. And Joe and I needed a wake-up call to that. Well, here she is, 8 lbs. and 4 oz. of a wake-up call that says "You can do better, and now you have to."
So while that first night home was exciting and terrifying and overwhelming, I wouldn't trade the experience for anything.

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