Starting Symptoms and Heading to the Hospital

Many of you know that Mira's oxybutynin (the medicine to keep her bladder relaxed) was recently increased by almost 3x the amount she was on, two weeks ago.

Last week, the first week after her medicine was increased, she seemed to be tolerating it well, and it seemed to be doing its job. She wasn't saturating her diapers as much, and we were getting higher residuals (the amount of urine obtained during a catheterization). But as of this past week, the second week of her being on the higher dose, she started showing some of the negative side effects of the oxybutynin. Her mouth and lips would get really dry. She was more constipated than usual. After getting her oxybutynin, her skin all over her body would get red, and her cheeks would look wind-burnt. She also seemed like she was having a really difficult time regulating her body temperature. For instance, her feet and legs would be really cold, but her back would be so hot, it felt like your hand should be burnt from touching it.

She wasn't showing too many of these symptoms until Monday night. Monday, early evening, shortly after her mid-day oxybutynin dose, some of these symptoms occurred at once, which had not previously happened. Her skin was red all over her body, she was really irritable and uncomfortable, her cheeks, mouth, and lips were dry. And her internal temperature was slightly high, 100.0 on the dot. She had not previously had a fever correlated to her oxybutynin, but I gave her some Tylenol. Within a half an hour, she was fine. But throughout that night, it was seeming to me like she wasn't having bowel movements like she normally does. 

Then Tuesday morning, she got her oxybutynin around 8 am. She only had a smear of poop in her diaper, which is unusual for her. At 9 am, Mira's pediatric nurse, Sheila, arrived for her shift, and when she picked up Mira, Mira cried out like it hurt her to be moved. She did it again each time for the next couple of hours. By noon, she started getting really lethargic, and Sheila and I noticed that she her fontanelle (soft spot) was getting harder. Her shunt site, which is usually extremely defined, was becoming less defined around the hardware, and Mira felt really hot to the touch, even though she wasn't running a fever. By 1 o'clock, when I was leaving to get Dustin from school, Sheila and I suspected shunt malfunction, and I started making the appropriate calls to get Mira to the hospital. 

I called my Dad so he could take Dustin, our 5-year-old son, and Aryanna, our 2-year-old daughter. 

As I was getting Dustin from school, packing up the kids, and waking up Joe (as he had just worked the night before); Sheila was packing up Mira's bag, and getting her ready to go.

During this time, Mira was becoming less and less responsive, and was over all difficult to keep awake. 

I called down to Children's hospital, and asked if she should be life-flighted from Greenville. 

They said that if I thought she'd make it, to just head down, but if anything changed during the drive, I could call and have emergency response meet us on the Interstate. 

So we threw everything in the car, and off we went to the hospital.

Updates

I just realized that my most recent blog post was a while ago when we were waiting to see if Mira was going to have emergency surgery. Thank God, she did not have surgery. The issues resolved after we got her bowel movements under control. She now takes miralax once a day in one of her bottles. This keeps her regular, keeps her internal pressure down, and keeps her shunt working properly. Seriously, though, who knew constipation could be so horrible? And she wasn't even extremely constipated. It just turns out that with her, if she doesn't have a bowel movement at least once a day, her shunt gets backed up, which causes the ventricles in her brain to swell. At least we know what the cause was, and we know how to avoid this problem in the future!

When we were in the hospital, though they decided to do some routine tests to make sure everything else was going smoothly. One of the tests they did was an ultrasound of her kidneys, ureters, and bladder. The test results revealed that her ureters, going into her kidneys, were dilated, which indicates the pressure in her bladder is still reaching dangerous levels, even with her being on the medicine that relaxes her bladder and being catheterized every 4-5 hours. With this information, and the weight she as put on, we have now changed her bladder care plan. So she was getting cathed every 4-5 hours while she was awake, and she was also receiving 0.2 mg's of oxybutynin three times a day. The schedule now is that she gets cathed every 3 hours while she is awake, and that she receives 0.5 mg's of oxybutynin three times a day. This new schedule ensures that the pressure in her bladder is staying low, while also trying to train her bladder to function normally. 

OH! We also only have to wear her hip abductor on her at night now! No more half of every day, and all night long, just at night while she sleeps! Her hip is in the socket now! It's still a tad shallow, but nothing like it was! It should resolve itself as she grows, and we may never have to face hip surgery! Yay!

We are also getting ready to add occupational therapy to her weekly schedule. She already does physical therapy meetings once a week, and we do her physical therapy with her every day, but now that she's interacting with items, and playing with her hands, and becoming incredibly alert to her surroundings, occupational therapy wll benefit by really helping her develop those fine motor skills!

So those are the changes in her treatment plan, and the care that has altered in our every day lives, but she is just doing fantastic! She's so happy, healthy, and beautiful!

We Shall See...

Right now is a lot of just waiting to see...

It turns out, they only scheduled Mira for shunt surgery for Friday morning as a precaution. Dr. Greene wants to be sure that, if anything is revealed on Thursday indicating a malfunction, Mira already has a surgical slot available. So as of this moment, nothing is indicating that she needs surgery. We will reassess that option after obtaining new scans and lab results on Thursday.

As for her hip, I am waiting for the head of Ortho to review her hip ultrasound results and call me back. His secretary said I should be receiving that call later this afternoon. So right now, I'm just watching and waiting, and we shall see over the next few days what the results are for everything.

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.