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, September 9, 2013

Did I Fail Her?

Two weeks ago, we had a hospital stay for three days because Mira was not gaining any weight. We tried everything to get her to gain weight, but in the end, I had to quit breast feeding and switch to formula. Breast milk contains roughly 20 calories per ounce, no matter what a mother eats or does not eat. No matter how much I nursed Mira, she was not gaining weight. To get her to gain, we started supplementing formula three times a day. Even that did a number on my supply, and I was barely able to nurse at all. After about a week of that, I dried up almost completely, and we started exclusively formula feeding.
I was sad, because I was not ready to be done nursing. Mira is our last baby, so I will never again be a nursing mother. However, I felt it was the right call when I saw her gaining weight by the day, getting stronger, and truly thriving. We did the best we could, too, by getting organic formula and glass bottles. 
But now, since becoming exclusively formula fed, she's been incredibly constipated with extremely hard poop. This might be what is causing her cerebral spinal fluid problems now, because of all the extra pressure in her bowels. Granted, I could not see this complication coming... I know she needed to start gaining weight, and we did what was best for her at the time. This was an unforeseeable side effect. But I can't help but to feel like I failed her.
I know it's not healthy to think that way, and I'm not moping around in my own incompetence as a mother. But, as a mother, I have a few jobs: birth healthy babies, nourish those babies, care for those babies, and love those babies.
My body failed to build her properly, for whatever reason. I was unable to develop her spine the way a baby's spine should develop in the womb. Thus, spina bifida, and the baskets of other problems that come with it.
I was unable to nourish her the way a nursing mother and baby should experience. Mother's milk is supposed to always be best... but mine was not. I could not sustain her life with my milk. I could not strengthen her. I could not grow her correctly in the womb, and I could not grow her correctly with my breasts.
And now? Now she is facing things that no person should have to face. That no baby could ever fathom or deserve. All because my body failed to do what a mother's body is supposed to do. It hurts. It hurts on such a deep and personal level because I know, that if I had a choice, I would give her my spine. I would give her my nerves, my legs, my bladder, and my brain. I would make them from scratch, I would cut them from my own body, if it could possibly help her, but it can't. 
And while this martyred, self-loathing might sound dramatic, or morbid, or wrong... I also think it's okay. Because that's what a mother does. A mother looks at herself, and everything she does for her children, everything she has done for her children, and always wants to do more. And while I hate that my body did not provide what Mira deserved from me, and it hurts that I was insufficient, and it makes me incredibly sad, I will not be ashamed, because I know, that if given a choice, I would give her everything. And that's what mothers do. They beat themselves up, they pick themselves up, and they do everything they can for their children.

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