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.

Monday, June 3, 2013

Yay!... Wait... I'm Scared...

Monday, 5/27/2013, was the day we had the all-clear from the doctors to start putting Mira on her back. I've been so excited for this day, this milestone of hers, for what seems like forever, but has only actually been six weeks. I was excited about being able to put her in a real car seat instead of that flimsy car bed she had to ride in since she had to be laying on her belly. I was excited about being able to put Aryanna's old swing together and let Mira use it now. I was excited about being able to lay her down without being terrified that she would roll herself onto her back and possibly cause damage to herself. I was excited about being able to stop putting her diapers on backwards, and being able to stop using the butt flaps now that her incision is healed over. I was so very excited for this day for weeks, and so excited about the possibilities of something so simple, her being on her back, until the day arrived, and it was time to actually do it... Then I was terrified.
When Monday hit, and I realized I could put her on her back, I spent the first half of the day pretending today wasn't the day. I was so scared to actually do it. I was so scared that she wasn't ready. What if she wasn't? What if I hurt her? What if she didn't like it? What if it put pressure in a bad spot on her and caused her pain? What if she choked because she's not used to being on her back and doesn't know how to react if she spits up? ... I was terrified.
These milestones are miraculous and make me so proud of her every time she crosses one, but I'm also so scared to change something with her because I'm so scared of screwing up. Like when they told us we could quit cathing for now. I kept cathing anyways. Not as much, but I still did it every couple days until I was absolutely convinced it was no longer necessary. That point was a huge milestone for her... Peeing on her own... But I was terrified about the nagging feeling of 'what if she's not ready? What if I hurt her? What if, by crossing this bridge, I cause her irreparable damage?' So while I'm so excited and proud to watch her cross these milestones, it's also very scary. 
So I text my friend, Katie, who has a daughter about a month older than Mira, with spina bifida... Miss Lila. Joe and I got to meet little Lila before we gave birth to Mira, and Lila's parents, Bob and Katie have become very valuable friends. So I text Katie and asked her what she did when they gave Lila the okay to be on her back. Katie said they absolutely put her on her back and they couldn't wait! Lila did great, and they were also so relieved to get her out of that stinking car bed and into a nice, secure car seat.
So, I put together the baby swing, and put Mira on her back. I swear I didn't breathe for ten minutes! But my fears turned out to be silly because Mira was so comfortable that she ended up sleeping for four hours in that swing! It's now her new favorite place. She's become more alert since being allowed on her back, she sleeps better, and she's never choked. This also opens up a lot more physical therapy doors because the options were limited while she was belly confined.
My overprotective and overly cautious side had me scared out of my wits to let her finally be on her back, but it turned into another milestone where she never stops amazing me and filling me with unconditional parental pride. 


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