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.

Crying & Driving

How my night ended:

I'm driving to Walmart, late at night, crying. Who knew buying prune juice would be so monumentally important that it couldn't wait until morning. But, when you get told by a neurosurgeon that you need to give your baby prune juice to possibly prevent her shunt from malfunctioning, you do it, and you do it now.

I thought my day was going to go great. There was a lot going on, but I made that mistake again where I accidentally had expectations. They say if you want to make God laugh, just tell him your plans... I have got to stop thinking things are in black and white while forgetting all of those gray areas lurking in the shadows. 

Today, Dustin started his very first day of school, and Mira had her Pittsburgh spina bifida clinic appointment. Joe and I both could not be at both places at one time, so Joe took Mira to her appointment so I could take Dustin to and from school. We thought that today we would finally learn as to whether or not her right hip dysplasia has cleared up from using her hip brace these past couple of months, and we thought we would find out when operation(s) on her left club foot will begin. We did not find out either of these things because her orthopedic doctor had an emergency, and could not attend clinic today. What we found out instead is that the ventricles in Mira's brain have become larger, Mira's head circumference had increased drastically compared to the growth curve she was previously on, and pressure within her body is causing her back incision to "bump" out, which could compromise her myelomeningocele repair. All of these things are clearly not good, and clearly not what we expected to hear today, at all.

Even more disheartening, is that they have no idea what is causing it, so they don't know how to fix it yet. Mira has recently been somewhat constipated, and they think it is possible that the extra pressure in her belly is causing her cerebral spinal fluid to become pressurized everywhere else. This could be what is causing all of the above symptoms I listed, so this is where rushing to get prune juice comes in. For this week, we have to implement prune juice into her diet to keep her bowels moving. Hopefully, if we can get her completely regular, all of the pressure will be relieved and her symptoms will go away.

There is also a possibility that her shunt is on the wrong setting, which would be a very easy fix. They just adjust the setting with a magnet, and her symptoms disappear.

There is also a possibility that an unknown factor is causing her shunt to fail. All of the above reasons are why we are meeting with dr. Greene, the head neurosurgeon, on Thursday. If the prune juice/regularity does not clear up her symptoms, we'll be discussing further options then.

So when Joe got home from his and Mira's twelve hour day in Pittsburgh, we put the kids in bed together, gave Mira an exam to gauge her condition, and I floored it to Walmart to get the prune juice, while having a healthy and relieving sob fest.

It's frustrating, as a parent, to see your child go through things you cannot prevent. Like developing a bad habit, going down a harmful path, or hanging out with negative influences. It's frustrating, because you want to shield them from such things. However, lacking the ability to protect your child from their own body is frustrating and disheartening on a level I could never accurately explain. 

She's my daughter. To me, she is perfectly normal. I look at her, and I see a happy, burping, smiling, farting, cooing, drooling, beautiful baby... I see my daughter. It's so easy to forget sometimes, that within my perfectly normal baby, nothing is perfectly normal. It's easy to forget that within that tiny, gorgeous body, a war is being waged, and my daughter's organs, functions, systems, nerves, and parts are the collateral damage. So while no part of me is hopeless, or regretful, or angry, I still ended my night crying and driving because I am scared. I am scared of what's to come, and what is happening within that tiny body. I'm scared to continue hearing things I never thought of or wanted to hear. But my fears will keep me motivated to do what's best for her, and my fears will humble me to remember that she is in God's hands. Even if I have to end my 'great day' crying and driving.