Getting to know them: Mia Grace

"...and my grace is sufficient for all men; ...for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them." Ether 12:27

Getting to know Mia Grace at this point is more about her needs as a baby and what I can do to meet those needs.

When I found out she had Spina Bifida, I thought she was at a disadvantage. I thought, why would God give her this?! Life is already hard as it is! Mia Grace is a great reminder to me of the promises given in the scripture mentioned above. She is such a strong little person. Spina Bifida isn't a disadvantage and it doesn't define her. When she was born, I realized that she was born to conquer. She has been so strong and resilient. There is nothing she can't do. 

I realized then that this scripture is more for me than for her. It was me who was weak. In other words, I was scared. I knew nothing of the medical world. The things I did know about her diagnosis and the care and warning signs we had to look for where too scary for me to think about. I felt like I wouldn’t be able to do any of those things.

Now that she’s been home for over a month, I feel like I’m getting to know her better as well as how Spina Bifida affects her. For example, Mia has hydrocephalus and had to get a shunt put in. The shunt helps all the extra liquid in her brain drain properly and it helps her so that she doesn't get symptoms from the Chirari II Malformation she has as well. So, if Mia throws up, I now think okay, is it her shunt? (I then touch her soft spot to make sure it's still soft). Then I think, she also has nerve damage somewhere in between her stomach and rectum...was she not able to digest the food correctly because she hasn't been able to poop? or is it the Chiari II making it hard for her to swallow? 
There's also the straight catheterization twice a day due to some nerve damage in her bladder. I remember I was really scared to do this one at first, but then when it came time to do it, I know God gave me the strength to be able to do it. 

Check out those curls!!!!

We have been able to go to what’s called, Spina Bifida Clinic. This is where all of the specialists come and see Mia. It usually takes half a day. I never thought I would love it so much. They answer all of my questions and I learn a lot! They calm my worries and help me help Mia. At the clinic we see the neurologist, neurosurgery, plastic surgery, urology, occupational therapy, physical therapy, her nurse, and nutrition. My favorite specialist out of all of them (and the most relevant at this point) is neurology. That doctor is so good at teaching us about Mia’s brain. Learning more about how her brain works and how hydrocephalus affects it and how the shunt helps it, allows me to prepare and understand when things don’t work correctly, or why they do work!

This doesn't mean I'm never afraid. HA! If I think about it too much or start thinking about what could go wrong and the unknown, I freak myself out and I just want to put both of my kids in a bubble where I can keep them safe and sound. But alas, that cannot be... That's when I have to stop myself and enjoy my baby NOW and the accomplishments of every day, as minuscule as they may seem. Like, all of her wet diapers make me go into my happy dance! It helps me know that her bladder is emptying and she'll be less likely to have kidney damage. She also hasn't had a UTI which is awwwwsome!! So far, we haven’t had the need to go to the E.R for a shunt malfunction or infection and I hope it stays that way. Her back is finally healing up nicely and she can lay on it. There's a lot of things to be thankful for and a lot of things to be happy about.

Mia has shown me strength, patience, and faith. I know God sent her to me so that I could work on trusting Him a little more. 

These two are magnificent!!