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.

Friday, April 5, 2013

Latest OB Appointment/Baby Registry

     I have informed you all that Mira will be born on April 17th. I will actually be about 38 1/2 weeks along at this point instead of the originally planned 37 weeks. In our most recent OB appointment, the OB's, my sister, and myself decided that since Mira is being born in a completely normal window of time, the amniocentesis is no longer necessary. The date of her delivery had to be pushed back because of insurance time frames and scheduling conflicts between my OB's and Mira's surgeons. Now that we will be carrying her longer, the odds of her lungs not being fully developed is less than 2%. With over 98% odds that her lungs will be just fine, I am perfectly okay with avoiding the potential risks that something could go wrong during the amniocentesis. The less trauma that is inflicted on her, the better; so I am more than happy to avoid this now. She will be facing enough already after she is born... no need to make her face anything else before she even comes out of her personal bubble!
     To do something fun after the OB appointment, Tammy and I went to the nearest Babies 'R' Us and created a registry! This is the first time I actually went to a store, and used that nifty little gun to create a baby registry for one of my children. We had so much fun looking at all the cute little outfits and picking out things that would be beneficial to have for her! Some of the items are things we definitely need/want and intend on getting, and some of the items are things that were just for fun that would be nice to have, but definitely are not necessary. This is our registry, if anyone is interested in taking a look: Babies"R"Us - Baby Registry
     One of the purchases that Joe and I agreed we will definitely be making is a video baby monitor when the time comes for her to sleep in her own room. We are already assembling her nursery set in our room, but we would feel more comfortable to actually be able to see her once she is no longer within our immediate sight. We have already been informed by her surgeon that we will constantly be keeping an eye out for different sets of neurological symptoms due to her hydrocephalus, chiari malformation, and shunt. Each of these brings on different types of neurological symptoms if something is wrong, so having a constant visual of her will definitely give me some peace of mind.
     With all of the planning, and how much fun I had doing her registry, I am getting so excited about her arrival! I am still very upset about being separated from her, and I am dreading the moment that I have to let her leave my side and go to a different hospital and go into surgery; but I am excited about the AFTER part. The part where I get to hold her, and bring her home, and introduce her to her big brother and sister! I can't wait to see all of my children together in our home, with my family intact and together! It will be so hard to be separated from my children for so long, but I am trying to focus on the after. After her surgeries are over, after my children can come home from various family members homes', after Joe and I can bring Mira home and she'll feel like OUR baby, not the hospital's, after the emotional roller coasters! After all of that is over, when things become "normal"... I just can't wait. Who knew that perfectly "normal" could be such an exciting thing!