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.

Tuesday, April 23, 2013

She's Mine!

Today was so great! Mira had her surgery for her shunt placement, and she did fantastic! We also started our training today with Georgia from the spina bifida clinic.
Because her temporary drain is out, and her shunt is in, we are finally allowed to handle her a little bit. She still can't be picked up and held, but she can be lifted a little bit, and be placed on her side. For this reason, I finally got to feed my baby today! I still haven't been able to nurse her, but she's eating breast milk from a bottle, which I finally got to give to her! I got to cradle her beautiful little head! And I was able to see both sides of her face for the first time because I was allowed to put her on her side while she was eating! Her face is so gorgeous! She looks so much like Dustin when he was a newborn, just with Aryanna's lips! All of my favorite faces mixed together! So so so beautiful! I loved holding her face, and feeling her move with my own hands! I finally got my hands on those chunky, beautiful, little cheeks, and got to cradle that chunk in my palm! It was wonderful! I could talk about it all day, but other stuff happened today, too!
Since we were training with Georgia today, we learned A LOT!!! I took five pages worth of notes during our conversation. Much of the information was about neurological symptoms we'll be looking for with Mira. Different sets of symptoms indicate different problems pertaining to her different complications. Some symptoms reveal infection, some reveal a problem with her shunt, some reveal compression of her chiari malformation, some reveal an injury that she may not be aware of because of her lack of sensation in her lower extremities, etc. Its quite in depth, and it's astronomically important! Part of our training today was hands on training as far as how we will be handling her; this includes catheterizing. So, I am happy to report that I successfully cathed her once with help and successfully cathed her once by myself (with supervision).
With finally getting to handle my own child; feed her, cath her, clean her, and change diaper... I finally feel like she belongs to ME... not to the hospital. It's finally real, that she's MINE! All mine! That I get to take her home soon, and that she won't be in that incubator forever being handled by gloved medical professionals only. Nope! Not for long! Because she's MINE, and soon (possibly Friday!!!!!!) I'll get to take her home!
There are no more surgeries scheduled in her immediate future, so once we take her home, aside from regular appointments, she gets a nice long break of normalcy! Thank God! Because Lord knows she deserves it! I love her so much, and I couldn't be more thrilled for her! She finally gets to just relax, and heal, and be loved! And oh, is she loved! She has already received so much love from so many people! It's beautiful! I'm so proud of her for doing so well through everything and making this typically horrendous situation look easy! She's the strongest person I've ever known, and... she's MINE!

1 comment:

  1. You are such an inspiration Caytie! such a strong and wonderful mommy! Mira is my hero! I love reading about her progress, such a strong, beautiful baby you have! I am so happy for you that you get to take her home soon! keep up the good work momma, you are doing great!

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