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.

Monday, February 4, 2013

Ladies: Please Take Folic Acid

      I never knew the importance of folic acid until my unborn daughter was diagnosed with spina bifida. After receiving her diagnosis, I threw myself into research to find out as much as I could about the defect and the many complications that come with it. One of the things I found out was how to PREVENT spina bifida. While spina bifida is not genetic, and has no cure, it can often be prevented.
     The development of spina bifida occurs during the first trimester of pregnancy. During this time, the spine would normally fuse together, but with spina bifida, the spine fails to do so. This defect usually occurs around 8 weeks of pregnancy, and at this time, most women do not even know they are pregnant yet. This defect can often be avoided if the mother is previously taking a higher level of folic acid before she even becomes pregnant. The CDC recommends for all women of child-bearing age to be taking 400 micrograms of folic acid per day. 4000 micrograms of folic acid if you, or one of your previous children have spina bifida because even though spina bifida is not genetic, if you have it or have had a child with it, your odds of having a baby with spina bifida increase drastically.
     This level of folic acid can prevent spina bifida, cleft lip, some heart defects, and other neural tube defects. You can either take folic acid supplements, or find folate (the natural form of folic acid) in many foods, such as beans, citrus, egg yolks, and dark green vegetables. The body, however, does not absorb folate (the natural form) as well as it absorbs the synthetic form, folic acid. 
     While I am not doubled over in self-blame, because frankly I do not think I could survive feeling like THAT on top of everything else right now, I do wish I would have been on a high folic acid diet before my pregnancy. I wish I would have informed myself before I was forced to find out this information, and I hope that others will learn from incredibly important information that I did not know. So please, eat more folate, take a folic acid supplement, and if you are even thinking about getting pregnant, look up what your body needs, and why. Prenatals do not cover everything, and by the time you find out you are pregnant, you may have missed your chance to prevent defects. My intention is not to frighten anyone, only to inform and hope that others act on that information.
 
Please view the following link to check my facts and learn from them: 
http://www.mayoclinic.com/health/spina-bifida/DS00417/DSECTION=prevention
Also check out more information and recommendations from the CDC:
http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5113a1.htm

Little Inspirations

      Joe and I had been discussing naming our daughter Mira, short for Miracle. Then, a few days ago, my future sister-in-law, Cassi, shared a link with me. It was an article about a very unique shooting star, named Mira. The star is one of a kind because it does not travel like other stars, it shoots past the herds of other stars and creates it's own path. Not only that, but while Mira travels, it sheds debris. This debris does not turn into dead, used up mass, like the debris of other stars, but instead, Mira's debris turns into more stars, planets, and has the possibility of actually creating life!
 A picture of the actual star, Mira.
     As I read this article, I clearly was not thinking about the star itself, but instead was making this connection to my daughter, and crying a very relieving, happy cry. A beautiful, one-of-a-kind creation that breaks the mold, overwhelms everyone with her uniqueness, and exudes life everywhere she travels. In my mind now, that is my daughter. Mira. 
     Little inspirations, like reading that article, puts a spring back in one's step after they have received some heavy blows. It's the little things that allow you to exhale with peace. For the next couple days, I was able to relax. Play with the kids, and take real joy from listening to them laugh and play together. Spend some time spying on my son while I was overwhelmed with pride as I secretly watched him practice his letters without knowing I was watching. Listen to Aryanna giggle while Dustin ran around, acting crazy, just to make her laugh. Sometimes, just a sip of ice cold water and a deep breath can bring you some peace.
     When you're dealing with a situation that is out of your control, that is so big and life-altering it can completely overwhelm you, little inspirations are where you will find sanity. That is where I am finding my peace, and finding the will to make it through and take it one day at a time. One step at a time, one plan at a time, one piece of knowledge at a time, and one little inspiration at a time.