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 26, 2013

A Feeding WHAT???

On Thursday, Tammy, Joe, and I were still getting used to being the primary care takers of Mira. In the other room, you were hard-pressed to be able to do anything that involved taking care of her, but in this room, the parents do most of the care taking. We are on a three hour schedule.
3, 6, 9, 12, repeat. Every three hours Mira gets catheterized and fed. The difference now is that with each feeding, I'm nursing her and then encouraging her to eat more from a bottle while she tries to get used to the breast.
The day seemed pretty uneventful. Physical therapy stopped by to let us know that splinting isn't really an option for her clubbed foot because of the severity and location of the curve. Since the curve occurs mid-foot, a splint would most likely cause damage to her skin instead of helping her bones. Orthopedics also stopped by to consult on whether or not they would start casting her now to prepare her foot for corrective surgery. They also decided against casting because of the potential skin damage it could cause. They think it would be best to wait until all of her current incisions and surgeries are recovered from before they start another surgical plan.
As the night came to a close, and we all thought there was a possibility of us being discharged tomorrow, Friday, we were informed otherwise, and it caught us off guard.
Joe and I went to the nurse's station to deliver more breast milk that needed refrigerated. Mira's nurse informed us that Mira's weight has consistently been dropping, that she needs to be eating at least 55 cc's per feeding, that she's only eating about 30, and that if she doesn't meet the 55 cc's per feeding requirement in the next two feedings, she will be put on a feeding tube. Not only was this a scary thing to hear, but with how amazing she has done through everything she has faced, this would obviously be a step in the opposite direction.
I rushed back into Mira's room to repeat word for word what was said to me to Tammy and Joe. Tammy and I both hopped on Facebook and started asking for prayers! The next three feedings, Mira ate SEVENTY cc's!!! That's right, 70!!! The power of prayer, the resiliency of a little one, and a baby's sheer will power should never be underestimated!
Talk of a feeding tube went out the window, and we couldn't have been more proud of our little trooper!



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