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.

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6 thoughts on “Claire update: no surgery this week

  1. “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.”

    ^ this is why I love you.

    Prayers for your lovely little family continuing.

  2. I came across your blog because I am having twins and am considering to cloth diaper them, I did with my second child. Coincidentally myy oldest, 4.5, has spina bifida, and it seems extremely odd that they are not rushing to do the surgery when it is clearly obvious she needs it. Of course, it may just seem that way to me because you blogged that she was vomiting, and looking at the pictures has developed a hydrocephalic shaped head. Her eyes also look a bit sunken, which happens with hydrocephalus. So anyway, they must know something that doctors here don’t, because she would have had it placed months ago to prevent permanent damage.. Just seems REALLY odd, and I hope you don’t take offense, but I just couldn’t believe it. Anyway glad cloth diapering is going well with twins, hoping I can keep up with three in them.

    • Mary- not sure if you’ll see this, but, we still haven’t had the shunt surgery. My husband is a pediatrician, and we also have a really excellent neurosurgeon who takes a conservative approach with surgery. While Claire does have hydrocephalus, it turns out that the few times she has had vomiting, it has been from a UTI and cleared right up with antibiotics. Otherwise, she has had no symptoms from the hydrocephalus– no trouble breathing, no sundowning of her eyes, nada. So, knowing that surgery is always risky and not wanting to deal with a lifetime of possible shunt revisions and complications, we took a wait and see approach, willing to do the shunt, but also OK with waiting and watching for symptoms of problems before doing so. Our surgeon has done a lot of research and believes that many times, hydro patients can sort of turn a corner and start to follow the growth curve with their head size. That’s what’s happened with Claire– still no symptoms of the hydro and her head has started to follow a curve.

  3. Thanks for responding..never heard of waiting with Spinabifida (unless ventricle size is normal), but glad it stabilizing… Does he think once the fontanels fuse there may be more symptoms that arise?

    • She has some swelling in her ventricles, but again, since it’s not causing problems, we’re waiting to see what happens. If she’s got concerns about what happens when the fontanelles fuse, she hasn’t said so. But we should be seeing her again soon. She sees us every single time we go to the SB clinic, even if we’re just seeing ortho or uro that day. She also gave us her cell number, and came to see us personally the time we took Claire to the ER for vomiting. I’m so thankful to have a surgeon we trust so implicitly.

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