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.

Thursday, May 2, 2013

Interesting

There are little things that we have to do with her that I don't realize would be interesting to someone who isn't familiar with everything going on with Mira.
For one, we have to put her diapers on backwards right now and fold them down to keep everything away from her back incision. Dustin graciously pointed out that I was changing her diaper wrong because he saw me put her diaper on backwards. Hahaha. I told him we had to do it this way to keep her cut safe, and he said okay, but I forgot that this might seem weird to someone who doesn't know any better. A backwards diaper.
Another thing that I found incredibly interesting that we learned in the hospital pertains to Mira's shunt. She has a programmable shunt. This means they can change the setting of how much cerebral spinal fluid flows through the shunt by using a magnet on the outside of her head. They don't have to go back in to change the setting and out her through another surgery. The magnetic field needed is called gauss. The interesting part is that there are other things that put out gauss, so we have to keep those things away from her head. The most interesting one is an iPad (which I'm using to update this right now). We have to keep iPads eight inches from her head. If they get closer than two inches to her head, it could change the setting on her shunt. Also, if we ever go anywhere with security checks, like a court house or airport, and they try to use one of those wands to check her, we have to stop them. The wand puts out enough gauss, just being passed over the body, to reprogram her shunt. So we'll probably try to avoid areas like this. The day would not go too well if I had to tackle a security guard in a secure area. I imagine my bail would be reasonable, but better to avoid it anyways. Mommy doesn't need a criminal record.
While I'm glad that if the setting on her shunt needs changed, they don't have to do another surgery jut to change it, but it's also scary that other things could reprogram her shunt, and we wouldn't even know until problematic symptoms occur. Cool, and convenient, and scary, and very interesting, nonetheless.

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