October

October is Spina Bifida Awareness month.

Each year that October approaches, it's always so crazy to look back on previous years and reflect on how much things have changed.

There have been five Octobers since Isaiah was first diagnosed with spina bifida. Let's rewind a little bit:

It's not a secret that my pregnancy with Isaiah was unplanned. He was my first pregnancy, and I had absolutely no idea what I was getting myself into.

I knew that abortion was an option, but never even considered it.

I was in Reno, NV with my best friend and my parents when I missed my period. My now ex husband and I were on a break at the time but were still in contact. I told him I hadn't started my period yet and he bought pregnancy tests and chocolate for me to have when I got back. I was so scared when that line showed up, bright red. But I took it for what it was.

Tyler and I decided to give it a shot and try to work things out for our baby. It was rocky, and as I mentioned I believe it was the beginning of the end of things. But that's for a different story.

The morning sickness hit hard. The food aversions were unreal. The bloat. The aches and pains.

Then suddenly I was being handed pamphlets about genetic testing. What the hell is genetic testing?

I posted a poll on my Facebook page asking about genetic testing and I read through the pamphlet briefly. Some people mentioned that false positives happen all the time and that it wasn't a good idea. But I went on a whim and did it anyway.

The initial quick screen came back normal for all levels - yay!

The second blood draw came back a few weeks later as abnormal for AFP (alpha-fetoprotein) levels. I had no idea what that meant. Again, I turned to Facebook and again, got the people telling me they got false positives. But a couple weeks later it was confirmed at my anatomy ultrasound that my son had spina bifida. I still really didn't know what this meant. I was asked if I wanted an amnioscentesis and I said yes because I wanted to know everything I could find out.

My care was immediately transferred to OHSU in Portland, OR to a MFM specialist. I had ultrasounds once a month to keep an eye on the fluid on his brain, and make sure everything else was developing properly. Given the level of his lesion, I was encouraged. They told me he would probably have feeling maybe to his knees, would probably walk, maybe with assistance at times, and most likely would not need a shunt since his head stayed stable the entire pregnancy. Towards the end of my pregnancy I had more ultrasounds and NST's. I planned my c-section for February 18, 2013.

I did everything I could to prepare, all the while still freaking out on the inside. The day came that I would have my son. I didn't eat for hours in preparation for the anesthesia, and left the house at 5AM to get registered by 6AM. I was about to be rolled back to the OR when three emergency c-sections came in. Since mine was planned and I wasn't anywhere near labor, they pushed mine back to the next day.

If I had learned anything at that point, it was that nothing was going to go as planned.

When they delivered Isaiah, I blinked the tears out of my eyes just long enough to catch a glimpse of him before he was whisked away to be bandaged up.

You see, Isaiah was born with a gaping hole in his back. Most cases of spina bifida myelomeningocele have a bubble covering the defect, but Isaiah's was technically myeloschesis because he had no bubble. I wasn't ever told this, and more than that I wasn't told what kind of affect this would have on the nerves. (I'll get back to this later.)

After Isaiah was all wrapped up and I was stitched back together and getting taken off the spinal block, Isaiah got to hold my finger for a few minutes before he was strolled off to his first surgery to repair his back.

I had a horrible time with pain management, so I was unable to come off morphine until the second day to see Isaiah. I was able to breastfeed with some help. But then I got discharged.

I had to go home without my son. I was home alone a lot. I was on painkillers. I was unable to see Isaiah much except at night because no one was available to take me until everyone was off work. I remember getting the phone call from Isaiah's neurosurgeon talking about his MRI and that his ventricles had grown significantly and they needed verbal permission to take him into surgery to install a shunt. What a helpless feeling. Of course I gave the go ahead, but I couldn't even be there. Cue the mom guilt.

When it came time to bring Isaiah home, we couldn't bring him home in a normal carseat because his back was still healing. We had to bring him home in a car bed. Yes, they exist. It took up the entire backseat of my Ford Focus. Isaiah had to lie face down in this thing for a couple of weeks until we got clearance to have him on his back.

At five weeks old, I had some friends over to see Isaiah and visit, when he projectile vomited all over my friend. "Isn't that a sign of shunt failure?" Well yeah, but there's no way that's actually happening. Should we just wait it out? No, let's just go. They'll send us home, we should just go and get it checked out just in case.

MRI quick brain scan came back and his shunt had gotten clogged with old blood. Crap! I hadn't planned on something actually being wrong. I didn't pack anything. I forgot my pump at home. I didn't pump for 13 hours. I ended up with mastitis. And aside from that, my son just went into his second emergency surgery. Will this ever get easier? Will we ever stop worrying now?

The short answer is no. I will never stop worrying. There will always be another surgery. Another uneducated person making a comment, or staring because there's a child in a wheelchair.

There will always be something to worry about, but for my children I put on a brave face and take each day as it comes. I've learned that how I deal with things, how I treat people and situations, will impact how my children may do the same.

For instance, when we found out Isaiah wouldn't ever walk without assistance, or even when I got the phone call about him needing a shunt. I felt a lot of resentment. For years, I harbored so much resentment. Towards the doctors, towards my ex husband, even towards myself. But I realized the only choice I have is how I react. The situation has already happened, so what am I going to do to make it the best outcome? Resentment is a tidal wave, that was swallowing me up. It took me so long to really understand that the only person I control is myself.

Isaiah's second shunt malfunction was asymptomatic, with the exception of a swollen optic nerve, which was caught by Isaiah's amazing ophthalmologist at Casey Eye Institute. His third shunt malfunction was 100% not symptomatic. It was only found by routine MRI. When the neurosurgeon came out after surgery, she told me the pressures were so high she was truly amazed that he had no symptoms. And then we were out of the hospital less than twelve hours when it malfunctioned again. This time symptoms were full force, which was almost a relief. And thankfully we've been malfunction free since then, which was over a year ago!

One huge reason for moving back to the Portland area (besides the split) is because of the access to care out here. Living in a small town is not ideal for a special needs family because of situations like the one we found ourselves in. I never thought I would see the day when I'd have to sit in an airplane next to my son on a stretcher. 

There is nothing so helpless feeling than holding your child in your arms, watching them seize; telling them everything is going to be OK, even if you're not sure they are. Because even though you're saying it to them, you're also trying to convince yourself that everything is going to be OK, too.

Isaiah has had a total of ten surgeries, one life-flight, and I've lost count of hospital visits and imaging.

 

Despite all of this, my son is a child. That's it. I tell his stories, I mention his medical procedures and our struggles to relate to other parents who have been through the same. But I do it to prove that special needs kids are still just kids.

Spina bifida does not define our life. It's a diagnosis, not a death sentence.

"No amount of guilt can change the past,

And no amount of worrying can change the future."

-Umar Ibn al-Khattab