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.

Sunday, April 21, 2013

Sunday 04/21/2013

Today was a nice, relaxing day. Mira had a very uneventful day, so that's great! She ate really well, she slept really well, and she's healing really well! She weighs 8 lbs. 1 oz. at the moment, and she is 20 and 3/4 inches long.
Her shunt surgery is scheduled for Tuesday. To prepare for that, and to make sure it is absolutely necessary, they had her temporary drain clamped all day today, and will take an ultrasound of her brain tomorrow to see how the fluid has built up in her ventricles in the 24 hour period. There was a possibility that she would've been really uncomfortable all day today because of having her drain clamped, but even with the pressure slowly building back up in her head, she's been doing great!
My feet and ankles are more swollen tonight than they have been thus far, so I am going to prop them up now and get some sleep so I can get back to my little Mira in the morning! Good night everyone! Much love to all of you!



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