Tuesday, June 26, 2007

What's worse than dirty underwear?

The answer: dirty socks. I'm thinking of this because I'm packing. When G had his first shunt revision, hubby and I didn't pack anything when we went to the appointment. We live about two hours away from the hospital, so I'm not sure what we were thinking. G was admitted and had surgery that afternoon. It was a Monday, and we came home by Wednesday. I was able to survive the underwear, pants, shirt, but the socks were giving me heaves when I had to put them back on in the mornings. I shudder at the memory.

We've been through a few more unexpected surgeries since then, and I bring extra underwear, but I definitely overpack socks.

G has an appointment today for a CT scan. His behavior has changed, and we're thinking shunt. I hope I'm wrong.

Thursday, June 21, 2007

The shadow of the shunt

This morning was G's last dose of antibiotics. He has a fever. I debate, I call, and we go. He was on amoxicillin, so I wouldn't have been surprised if it hadn't done the trick for the UTI we were trying to get rid of. It looks like it's just a virus, though.

I said to the doctor that I felt so paranoid bringing him in for just a virus. His comment was, "You need to be paranoid with him." He meant this in a reassuring way, and I took it that way.

I still feel paranoid, though. G is four months post-op for his shunt, and he's still at risk for shunt infection. He cleared for strep throat (his throat was red), his urine sample looked clear, so we're going with the virus. Unless something grows in the cultures. His blood count was good, though (11, 000), so as I run through all these things I feel calmer.

I feel like, though, I live under a shadow. The shadow of the shunt. The questions, the concerns, the potential issues. They are always there. I'm always trying to rule them out. Will I be able to breathe easier someday?

Tuesday, June 19, 2007


I've never been much of a worrier. I'm the laid-back mama who lets my kids play, who lets her kids develop at their pace. I always have a watchful eye, but I try not to smother.

Then along came G, and I've become that mother. The one you talk to who always thinks something is wrong with her child.

I see this about myself, and I don't know what to do. I don't particularly like to think I'm a worrywart or paranoid. I want to be calm and relaxed, but his recent history has warped my perspective.

What I'm most afraid of, though, is being dismissed by the medical community as THAT mother. So far, my record is pretty good in knowing when something was wrong. I'm always questioning myself, though. Is something wrong? Am I overreacting? Over and over I do this, and I try not to make a call unless I'm sure. Reading through some of the medical blogs only reinforces this doubt in myself. I don't want to be perceived as an overanxious parent caught up in having something wrong with her child. I don't want to be perceived as stupid or ignorant.

My latest concern has been tethered cord. I find myself looking for the signs, and I'm finding some. Every little thing that occurs, that is different, that "could" be something, is always, always about the shunt. G's been napping more and sleeping a long time. This could be attributed to a number of things. But there's this "but", and it is so hard to take things at face value. I hate losing that, I hate not being able to appreciate more sleep without that "maybe" surfacing. The one that I haven't spoken out loud because I KNOW it's silly is whether he's laughing too much. Seriously.

Do I seem officially over the top now on the worry factor? He giggles and giggles about something, and I honestly have been concerned that he's laughing too much. Worried that somehow his brain is being affected by pressure causing him to giggle incessantly. Now, honestly, why can't I just enjoy it? I do enjoy it, and I always end up laughing a long, but there's this cruel thought in the back of my head going, "I hope this is okay. I hope this doesn't mean anything serious."

Okay, maybe writing that out was a good thing. I'm giggling to myself now at how ludicrous it sounds.

It's so strange for me to worry this much. Worry isn't a good thing. It doesn't solve anything, and it only causes stress. And stress ain't no good. It gives me a big belly.

Monday, June 18, 2007

Musings on doctors

I've been attempting to write a post for several days now, but with four kids at home I have CONSTANT interruptions and lose my train of thought. I compose coherent essays while going to sleep at night, but when I sit down to write them during time at the computer, things sound fragmented.

I have several posts mulling in my head about doctors, challenges, perceptions, accomplishments, you know, things like that.

I will attempt to post something today despite the interruptions that frequently occur.

For us, since G was born, we have encountered quite a few doctors. Even before G was born, I guess. Once we found out about the spina bifida, we were sent to a group of perinatologists, and they thought it was brilliant if you saw each and every one of them. I hated that. How do you get comfortable with who is attending your birth? You don't. You don't know who will be there, and they think if you meet each of their doctor's at least once, somehow they'll remember you at your birth. Or you'll be more comfortable since you met this doctor. Or something. It's beside the point, really. My intention for this isn't about that.

At each visit, I had a lot of questions, and I wrote them down in this small notebook I purchased. I referred to it as my Brain because it contained names, addresses, pertinent questions, important answers, and it did the work for me to remember everything I couldn't at that time. Once G was born, I continued using this notebook and bought a new one in January. It's been invaluable.

One of the main questions I had at this time was "What can I expect?" Initially, when we were given a diagnosis, it wasn't correct. It was believed he would die due to his brain malformation. When we saw the perinatologist after an agonizing ultrasound, he said, "Oh no, it's just spina bifida." We were given a pamphlet and some other reading material, and we went home with our minds swirling. I read the handouts, I read stories online, and heard some stories from others about someone they knew with spina bifida.

What I wanted to know, though, what can I expect from this baby, my baby? What will he be able to do? How long will he live? Will he be able to walk? What about his bladder and bowels? What about the shunt? Will he be brain-damaged? How much? Will I be able to breastfeed? What is he going to be like? Will he look funny? Scary? I mostly focused on the birth plan after awhile because contemplating these questions and the possible answers were tough to deal with.

I remember we spoke to the neonatologist before G was born, and the answers he gave were vague and didn't really answer much. Basically, it came down to each baby with spina bifida is individual. The severity is different for each one. My baby's lesion was lumbar 4ish, and it was probable he'd walk, but it wasn't promised. He could have severe hydro and be mentally handicapped, or he could not have hydro at all. The range is wide for spina bifida babies.

It was tough to accept that we wouldn't have definite answers, but I decided I had to. After he was born, the doctors we've seen, the neurosurgeon, urologist, orthopedic, haven't given us false hope. They haven't given us devastation either. They've presented us with information and caring, of which I'm much appreciative. They haven't once said, "Oh, he won't be able to do this or do that." or "He'll have nothing wrong! He'll be able to walk!" They've told us clearly, They Don't Know.

In some ways, it was hard to accept this answer of I Don't Know, but as time has gone on, it's been okay. They were right. They don't know what my son will or won't be able to do. They have an idea, I'm sure, but as one told us, he didn't offer that kind of speculation anymore because he's been proven wrong more than once. I appreciate that. There's the knowledge of what he can potentially do/cannot do in regards to his lesion level, but nobody's stuck him in that box.

I feel that we've had very positive experiences with G's doctors so far, and I'm very thankful. This isn't to say we haven't had negative experiences because we have, but his main team has been excellent.

Saturday, June 16, 2007


It's been very hot and muggy here recently. I thrive in it, but G is on medication that inhibits his ability to sweat and puts him in danger of overheating, so to speak. He flushes up even when it's not this hot.

On Thursday, my mom, sister, nephew, G and I went to town. We ended up going to a few garage sales, but sis and I didn't feel like taking the toddlers in and out of their carseats, so we chatted in the car. Afterward, we went to a bakery to get cookies (can I say YUMMY?? I'm all about making my own, but these were delicious), and as we walk in the clerk commented on my G's "sunburn." I didn't correct him that he was flushed, but he went on about it a little.

We ordered our cookies, and he brought it up again, saying something about keeping little ones out of the sun. I made a comment about him being flushed by the heat, but I didn't feel like an explanation was necessary at this point. While we were paying and saying goodbye, he said, "Keep the little one out of the sun!"

I finally said, "He doesn't have sunburn. He's on medication that causes him to flush."


I'm not sure what's the correct thing to do in these circumstances. Sometimes I feel like I overshare and sometimes I don't feel like giving all the information. The clerk wasn't rude, and I appreciate his concern.

Thursday, June 14, 2007

Not finding time

Well, it is summer, but I think it'll slow down a bit after this week. The kids have been going to Bible school near my parent's, so we've been hanging out there. It's been nice, but I feel like I'm going, going, going.

G had an ophthalmologist appointment Thursday, and of course, it came with drama. His optic nerve was swollen, and we had to head over to the neurosurgeon for a CT scan and consult. We'll be going back in a few weeks to see if it's resolved. It's possible it is just that way, but it's also possible it's indicating pressure. My gut is telling me he's okay shunt-wise. A few weeks ago, I didn't feel that way, though, and I wonder if he had a partial blockage that flushed out.

The shunt is such a "thing" all the time. It sounds like it can be such a non-issue for some people. Not us, I guess!

Monday, June 04, 2007

He's not Spina Bifida

In one of my groups, we had a new parent join, and another parent gave her the advice that this isn't spina bifida you are expecting, it's a baby. She told her to enjoy the pregnancy and focus on the fact she has a baby coming.

I remember receiving that advice myself not too long ago. Well, almost two years ago! At the time, I yelled at the monitor, "HOW???", but it was the best piece of advice I received. At first, I was consumed with finding out information, uncertainties, concerns, all that good stuff when you get a diagnosis such as it's "just spina bifida."

But then it shifted. I decided to enjoy the pregnancy, I decided to embrace the baby, and come what may. Sure, each doctor's appointment brought issues to the forefront, but I resolved to have my moment and move forward.

I did have a good pregnancy. I was pregnant in the summer, he wasn't due until the end of September, and I loved it. I loved the clothes I was able to wear (sooooooo cute), I loved that I wasn't itchy (winter pregnancy gave me dry skin), and despite being diagnosed with gestational diabetes, I felt great.

When we were given the diagnosis that he had spina bifida at around 24-25 weeks, I hadn't felt him move much. He started going crazy then. At first, I was upset. It was bittersweet, but it eventually became reassuring.

When people would ask the normal pregnancy questions, it was difficult to not answer, "My baby has spina bifida." There was this sense of that was what he was, if that makes sense. He became different with that diagnosis, and I had to work past it. Even when he was a newborn, I still associated him with spina bifida. He's not spina bifida, though, he's a baby, a toddler, a person. I think he'll get this tag a lot as he gets older. He'll be "that kid with spina bifida", but to his mother, he'll be her son.

Saturday, June 02, 2007


When G was born, it was hard to imagine what his feet would look like. I knew he'd have clubfeet before the ultrasound. When I found out he did have clubfeet amidst the other issues, it was almost reassuring. It was something I was familiar with. Our oldest had been born with a clubfoot, and we'd been there, done that.

At birth, though, the sight of his feet and legs shocked me. He didn't have "just" clubfeet, and it was very apparent. I remember when my daughter was born, and I couldn't imagine how they could fix her foot to be straight. It happened (quite nicely, I might add), and I naively thought it would be just as "easy" for G. When he was lying in the NICU, and his little legs lay there, I had the same thoughts, the ones I wasn't expecting to have because, hey, I've already done this! How would they possible straighten and appear "normal"??

It did take a lot of casts (21), but his feet really do look good. He's had tenotomies, but he hasn't had to have major surgery on them. Perhaps it's in the future, but for now, they are straight and beautiful. It is such a small victory avoiding that one surgery. There was a time where I gave up and felt "doomed" to have the surgery. I remember thinking, "What's one more surgery?", and I can't believe I ever thought that, but I did.