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.

Saturday, April 27, 2013

Urine Has Never Been So Interesting!

Mira has been eating about 70 cc's each feeding, but Tammy noticed each time we feed her that amount, she always spits up. We may have gotten so scared about the feeding tube idea that we started over-feeding her, so we cut it back to 60 cc's per feeding, and we'll see how that goes. Because of the focus on knowing exactly how much she's consuming and exactly how much urine she's expelling, we have put nursing on hold. For now, I'm going to pump so we can see exactly how much she is eating, and we'll revisit breast feeding in the comfort of our own home.
Because we are monitoring her feeding so closely, and she is still not gaining weight, the nurses informed us that we won't be discharged today, and that the absolute earliest we will be discharged is Monday. Because of this, Tammy and Joe cannot stay until the end of our hospital stay, as Joe is expected to go back to work Sunday, and Tammy has to be back at work on Monday. Joe decided to leave tonight to get some more of our running done, to get our house more Mira ready, and to take a lot of our items that we don't need here back home. Tammy will stay the weekend, but head home before she has to go to work.
After Joe left, I ended up calling him a few hours later with some very good news! As the swelling in her spinal nerves goes down from the trauma they've endured during surgery, more function and sensation is developing from her waist down. So I called Joe to not only tell him that she's been moving her legs, but for two diaper changes/cathing times in a row, she peed her own diaper and we got nothing from her cath! This means that she actually emptied her own bladder! This is the first time since she was born that this has happened... TWICE! Joe and I celebrated over the phone, and he told me to give her a BIG kiss from Daddy because he's very proud of her! Tammy and I couldn't get over how much of a huge step this is for her! I never thought urine would be so interesting!
Every time I think I couldn't be more amazed by my children, I am proven drastically wrong! The beauty of every little step ahead they accomplish is so wonderful... I am left in awe over and over! After everything Mira has been through in less than two weeks of living in this world, she has taken it all in stride, overcome every obstacle thrown at her like it was no big deal, and still manages to be absolutely adorable! I don't know how she does it, but God certainly knows, and Mira absolutely astounds me with her resilience, strength, and beauty!







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