Scared to Sleep

With Mira clearly having problems, and not knowing the cause of those problems, I'm scared to even sleep. What if I'm asleep when her condition worsens? What if I sleep away the window of opportunity one has to get help when a shunt malfunctions?

This is why last night I slept with a stethoscope in my ears, listening to her breathing. This is why I only got a total of three hours of sleep last night. And this is why I can't bring myself to crawl into bed now. Because I'm afraid to go to sleep and take my eyes and awareness off of her.

Tonight, while I was eating dinner with the kids, I got a call from children's hospital OR scheduling team to confirm Mira's shunt surgery on Friday morning. Problem is, Joe and I were never informed that Mira is scheduled for surgery, let alone that it was even on the table. Now I have to wait until tomorrow morning to find out what exactly is going on. Does she need surgery? Did they find something on her scans that indicates a problem with her shunt? And why the hell was OR staff informed of my daughter's possibly surgical condition before I was?

We've been on high alert since yesterday. Watching everything she does. Looking for any symptom known correlated with spina bifida, hydrocephalus, chiari, or shunt problems. We've been logging everything. How much she eats, how much she urinates and poops, cath volumes, head circumference, and neurological deficit indicators. She has seemed okay, but something still seems off.

Then tonight, as our pediatric nurse was leaving, Mira vomited all over the both of them. Not spit up... Threw up. This could be one of two things... She is adjusting to the prune juice we've been having to give her,or her shunt is malfunctioning. She is sleeping now, but I'm watching her and checking her constantly.

If anything, and I mean absolutely anything, makes me lean towards shunt malfunction, I will be calling an ambulance and demanding that a paramedic escorts Mira to children's hospital. If I think she is encountering a problem, I will not wait until Thursday morning for her to be seen, assessed, and treated, because with shunt malfunctions, Thursday morning could be too late. I'm not putting my daughter's life on the line for scheduling purposes. So it's high alert time! Every neuron and nerve ending in my body is standing at attention! And I'm scared to death to fall asleep.

Praise God!... And Prune Juice!!!

She finally pooped! After giving her bottles with prune juice in them since last night, she finally pooped. And not a rock hard nugget that causes all the pressure, but some normal, disgusting, foul smelling, baby poop! Praise God, and prune juice!
After she pooped, her soft spot was a little softer. We're still on high alert, watching her every movement, checking her soft spot, shunt, back, eye reaction to light, tummy bloating, bowel sounds, and level of alertness. But, she's smiling, cooing, eating, and (finally) pooping!
I think we're going to be okay to wait until Thursday for her next head scan and meeting with Dr. Greene. Prayers for good news, no faulty shunt, and no surgery! Prayers that all it took was a couple bottles of prune juice to avoid a life-threatening complication. How beautifully simple, prune juice, and how incredibly grateful I am to have had the privelage to change that disgusting, massive, relieving, mess-of-a-diaper just a little bit ago! So again, praise God, and praise prune juice!

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.

NIP

NIP: Nursing In Public. I've done it before; I have three children, all of them have been breastfed, so nursing in public is something I have done many times. However, yesterday is the first time I nursed in public without a cover, and I have to say, I wish I had done it a long time ago!
Joe, I, and the kids went to see fireworks with Tammy and her family. It was at a local festival, so we walked around, let Dustin play some games, got Aryanna a pretty flower halo to wear on her head, and got some funnel cakes. Then we went back to our cars, popped out some fold-up chairs, and relaxed while we waited for the fireworks show. Mira started to get hungry, so I nursed her. As I said, I have nursed in public many times, but never without a cover. I am usually in the grocery store where it is air-conditioned, or at someone's house where I can go into another room. However, this time we were outside, where the heat was already pretty strong, and my vehicle does not have air conditioning. So, I was not going to cover Mira in a blanket and make her sweat and over-heat just so she could get her meal. So for the first time, I just (discreetly) pulled out my breast and let her eat. I honestly wish I would have done this for all of my children.
First off, no matter where you are, when using a cover, you always make the baby and yourself sweat. Always. The skin-to-skin plus being smothered by a blanket causes you both to sweat, and it is pretty uncomfortable, I could imagine it is for the baby, too!
Secondly, when you use a cover, EVERYONE knows you are nursing, and you tend to get a lot of glares! The blanket is like a huge neon sign that says "LOOK AT ME, I'M BREASTFEEDING OVER HERE!" When I nursed Mira yesterday with no cover, almost everyone walking past had NO IDEA I was even nursing. I was showing no more cleavage than I would have in a normal shirt, and her head covered everything private about my breast. A few people looked at me, saw that I was nursing, and continued on their way. I did not get ONE dirty look; not even one! My faith in others was restored a little bit throughout the process, and I have decided that I am DONE with covers. If people cannot handle a breastfeeding baby, then they can choose not to look. I cannot choose to NOT feed my baby, so from now on, I am choosing to do so in whatever way makes her most comfortable, and NOT being smothered by a blanket while she is trying to eat is probably more comfortable for her!
On a different note, Mira did GREAT with the fireworks. Tammy held her and kept her ears plugged the whole time, and there were quite a few moments where she was actually watching them, too! She looked like she was in awe of the spectacle of lights, and it was awesome to see her enthralled by them! She never cried or became agitated, so I am hoping this is a good sign that she won't have hearing sensitivities. Dustin and Aryanna had a blast, as well, and it was all around just a great family outing!
So no more breastfeeding covers for us! Besides, the more people see it, the more tolerant society will need to become. If you want things to change, start with yourself! So I am starting! I am going to make feeding babies acceptable in all forms! If you want to bottle feed, GREAT! If you want to nurse with a cover, GREAT! If you want your breasts out and your baby not covered in cloth to eat, GREAT! Babies getting nutrition is all that matters, and as long as you are taking care of your children, there should be no judgment! You'll never get it from me, and I hope not to get it from others! But if I do get a dirty look, or a pitiful comment, maybe I'll throw a blanket on their head and say "Now, go get your lunch and see how you like it. Have a nice day!"

Mira, The Con Artist?

Today Mira had her weekly in-home therapy session through early intervention. We usually do her therapies at1:30 on Thursdays because it seems to be a good day for scheduling, and normally at 1:30 she's happy and alert, so ready to participate.

Today, my early intervention coordinator also attended the appointment along with Mira's therapist so we could fill out a questionnaire to monitor her progress. After the questionnaire, it was time to do Mira's therapy. Two stretches in, she started doing the "pain cry" so her therapist thought we should give her a break. This cry usually means gas bubbles, so I was working on getting gas out of her and changing her position for about ten minutes when her therapist thought it might be a good idea to just skip therapy for the day. He said he'll give her a get out of therapy free card because he doesn't want to make her work when she's not feeling well. So I continued to hold and soothe her while we set up next weeks appointment, and then our visitors left.

Roughly 20 seconds after they closed the door upon their exit, Mira stopped crying and was all smiles. I think she conned us. I think she metaphorically put her foot down! I think that this week, she drew the line at the harness and refused to partake in her hour therapy session where she has to work. And once again, I can't say I blame her! My beautiful little miracle, and con artist, has had enough for this week. I guess we'll see how she feels next week!

Hip Dysplasia

Mira's right hip is not forming into the socket the way it should, which is called hip dysplasia. We went down to Pittsburgh today to find out if it had developed normally on its own, or if we would have to have treatment for it, and we also had her audiology appointment today to make sure she is hearing properly.

Her audiology appointment went great! They said everything looks completely normal! Then we had her hip ultrasound, and then went to spina bifida clinic to get the results of her hip ultrasound. In spina bifida clinic, they informed us that her hip dysplasia has not improved, so now she has to be in a harness. The harness wraps around her midsection and shoulders and straps down to pieces attached to her legs. It holds her legs up in the air so that her thighs are jutted out at a 90 degree angle. Apparently, this position is optimal for encouraging the hip to develop into the socket properly. We have to wear the harness on her for at least half of every day and all through the night when we sleeps. We go back down in 4 to 5 weeks to monitor her progress.

While it is disheartening that she has to deal with another obstacle, it wasn't as big of a kick in the gut as her bladder problems were last time. The issues with her bladder and sphincter caught us completely off guard last time. This time, however, we knew what we were going down for, and we knew what the possible outcomes were, so we were prepared for this news.

It's just going to take a few days, at least, to get used to. She hates it! She screams right now when it's on her because she cannot move her legs into her favorite position. She likes her left leg tucked up under her butt, and she likes her right leg completely extended out... She can't do either of these with the harness on, so she screams because she doesn't like feeling restrained. I honestly can't say I blame her! I'll post pictures of her in her harness soon. Maybe after she gets more used to it so I don't feel like I'm capturing pics of her in a torcher device.