A Claire Bear update: neurosurgery on Monday

IMG_3548We just got back from a visit with our (much loved) neurosurgeon, and based on new information in last week’s MRI, we have decided in consultation with her and another neurosurgeon she asked to give a second opinion, that it’s time for Claire to get a shunt placed to treat her hydrocephalus. The lay explanation is, due to her spinal defect and chiari malformation, Claire’s cerebral spinal fluid doesn’t drain from her head and spine properly, causing fluid to build up in her head (aka hydrocephalus). While she has had the hydrocephalus from the start, we and our surgeon chose to take a conservative approach instead of operating when she was a wee baby, because surgery is always risky, because the risk of infection and complications is greater in younger babies, and because clinically, she was having no symptoms or problems from the hydrocephalus other than a big head as a result of the fluid buildup.

However, the MRI we got last week showed that not only are the ventricles in her head very large, indicating a lot of fluid has built up there, but also she has developed a syrinx, or pocket of fluid within her spinal cord. This has the potential to cause her to have problems with her arms and legs, and given the great strides and progress she has made mobility wise, and the hope we have for continued progress, we do not want to risk this syrinx compromising her physical abilities in any way.

It is for these reasons that we’ve agreed to have the shunt placed on Monday morning. We are of course a little disappointed that she has to have neurosurgery, but we are ultimately confident that this is the right time, and hopeful that taking this step now will give her the greatest chance to achieve all she can developmentally. She’ll stay one night in the hospital, and then should be back to her normal activities within a week or two. Thanks for always cheering Claire on– her internet fan club means more to us than you can know.

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Claire update: no surgery this week

After seeming to talk us into the shunt surgery in the ER, our neurosurgeon seemed to spend our clinic visit talking us out of it. While she seems to agree that the surgery is basically inevitable, there is still a slim slim chance the hydrocephalus will arrest, and since she’s not having severe symptoms at this time, we have a little time to wait. In the meantime, we’re probably going to start her on Zantac and see if that helps the vomiting.

I’m glad this means no surgery this week, though I’m pretty sure she will need the shunt at some point. Guess we’ll be staying in style when that happens, because the new infant and toddler unit at our children’s hospital will be open by then.

I also realize I haven’t updated about MY health issues in a while. Based on my slow recovery and echo-cardiograms, my cardiologist had me do a contrasted cardiac MRI. It was kind of crazy to actually feel the contrast get warm in my chest every time the MRI machine was on, and I now totally see why claustrophobic people totally wig out in those things. Personally, I pretended I was an astronaut about to be blasted into space. Anyway, the upshot is, it looks increasingly like I have a congenital heart defect called left ventricle non-compaction syndrome, which basically means the tissue in my left ventricle didn’t form correctly, which is why it’s weak and has such a “poor squeeze.” The strain and stress of the pregnancy on my body is what finally made my condition severe enough to notice. I now feel vindicated and want to go back to every PE teacher I ever had and explain that my poor performance in everything endurance related is actually the fault of my heart.

The MRI also showed that my ejection fraction (a measure of how well the heart pumps blood into the body) has improved from 15% to about 30% (normal is still 50% or better). I’m still doing well on my ever-increasing cocktail of meds, and I think my doctor will be adding a third medicine (I’m already on a beta blocker and an ace inhibitor) this week, and I hope the transition goes well.

Anyway, that’s what’s going on with Claire and me health-wise. Thank you again for all of your support, thoughts, and prayers.

surgery for baby claire

Last Thursday we spent most of the day in the ER with Claire, because her already more-than-average spit up had become projectile vomiting in the last couple of weeks, and had escalated to every other feed or so in the last few days. Dr. Dad thought she might have pyloric stenosis, and additionally, since increased vomiting is a warning sign that her hydrocephalus (extra fluid in her head because of the way her spinal defect pulled down her spinal cord and blocked the exits for the cerebral-spinal fluid) is getting more severe, so we wanted her to get worked up.

She got an ultrasound of her pyloris, which ruled out pyloric stenosis, so she got an ultrasound of her head, which revealed more fluid in the ventricles of her head than the last time we looked. She also got a head CT to get an even clearer picture. Her neurosurgeon, whom we love, insisted on coming down from clinic to see “her girl” personally, and we discussed whether or not it’s time to move forward with surgery to place a shunt that would drain the excess fluid from her head into her belly where her body could then absorb and deal with it.

The bottom line is, it looks like it’s time to get the shunt surgery. We had been hoping to avoid it, but we think that since the fluid continues to increase, we’d rather go ahead and do something about it instead of waiting for things to get worse, which would involve symptoms like trouble breathing and swallowing.

We hate that our wee girl has to have surgery again, but we know she’s a trooper and will come through great. We see the neurosurgeon again on Monday morning, and it looks like the surgery will be Tuesday or Wednesday. Not sure how many days inpatient would be involved, yet. Please keep our Claire Bear in your thoughts and prayers, and us too.