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 20, 2013

Lounging With An Appetite!

At this point, we all swear Mira is just on vacation. The way she just lays there, and she is so very content, reminds us of how someone would lounge on their belly on a beach and just sunbathe. That's pretty much what Mira is doing!
She's eating great now, too! Thank goodness my milk is finally coming in! I was getting do discouraged, but I didn't give up, and now I'm almost making enough milk to make formula completely unnecessary! Mira is now allowed to eat as much as she wants every three hours. Before, she was on a strict bottle routine of only 10 cc's over feeding, but now she's allowed to eat as many cc's as she wants! This last feeding, she ate about 30 cc's! She's got such a good appetite, so that's a really great sign!
The nurses are trying to get her to lay her head on her left side because if she doesn't switch sides that she's laying on, she could get a flat head, plus moving from side to side helps relieve the pressure. However, little Mira prefers to lay on the right side of her face! Earlier, the nurse changed the dressing on her head, and while doing that, she switched Mira's head over to make her lay on the left side. Well... when the nurse came back, Mira was laying on the right side of her face again! That little stinker picked her own head up, turned it back to the side she likes to lay on, and laid back down! I guess we're just gonna have to deal with her having a flat head because she won't let us have it any other way!
It is amazing how nothing seems to be bothering her! It just goes to show you how resilient little ones are! I got quite the look at her head drain and incision while the nurse was changing her dressing, and if someone did that to my head, I'd probably be inconsolable, but for Mira, as long as she gets to lay the way she likes, and she gets fed every 3 hours, she could care less! She really is incredible! She's taking all of this in stride, and I can't say enough how much of an inspiration she is!

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