A Claire Update

Having just spent my morning getting myself and the girls ready to go to Spina Bifida Clinic, three hours and change trapped with two two-year-olds in one exam room, and having gotten them home without car napping and successfully into and asleep in their beds, I pondered a daytime adult beverage. Instead, I wrote a blog post.  Continue reading “A Claire Update”

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graduation day

I don't have a lot of pictures of him doctoring, but here he is on a mission trip to Haiti a couple of years ago.
I don’t have a lot of pictures of him doctoring, but here he is on a mission trip to Haiti a couple of years ago.

I interrupt my regularly scheduled ramblings to bring you a moment of shameless bragging on my husband. Tonight, we will celebrate his very last graduation in what has been a very arduous journey toward his medical career. 4 years of college. 4 years of medical school. 3 years of residency, followed by boards. And now 3 years of fellowship, coming to an end, in which he will be board certified in pediatrics and pediatric emergency medicine, and on Monday will officially begin work as an attending physician, or, even more specifically and rad, an Assistant Professor of Pediatrics, in the emergency department.

Last night, as we sipped some wine, I told him, “I’m so proud of you for finally being finished.” He asked if I had to throw the “finally” in there, but I maintain that the “finally” is necessary to indicate just what a long, difficult process this has been. I wish I could do the math on all the hours spent working and studying to get to this place. I have never seen anyone work harder to achieve their dream, and what a beautiful dream to want to take care of the tiniest patients and help them to be healthy and feel safe. As I tell people, you don’t want to have to take your kid to the ER, but if you do, he will take GREAT care of you.

I’m excited for this next step in Jon’s career and for our family, and I am so very happy and proud.

Claire is doing great

Just woke up from as good of a sleep as one can hope for in a hospital, cuddling my Claire Bear all night. She came through surgery like a champ, waking up happy after anesthesia, and generally being the most chilled out kid who just had brain surgery anyone has ever seen. Her surgeons say everything went great, and judging by the pressure her cerebral spinal fluid was under, it really was time for us to do this VP shunt. She probably has been having a headache from the pressure lately and we didn’t even know it. Now, her head should stop growing so quickly and the rest of her should catch up.

We’re super grateful for the excellent care we’ve been getting, as well as all the love and support from folks like you. It looks like we will go home this evening.

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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.

Awareness

I found out today that October is Spina Bifida Awareness Month. My first thought was: what a crap choice in awareness months. I mean, everyone knows that October is Breast Cancer Awareness Month, as pink has pretty much blanketed everything we see.

But then I thought, well, it’s just as well, since I’m generally skeptical of “awareness” in general. I mean, I’m not usually sure of what it accomplishes. Half of the pink I see this time of the year seems to have no real point, as most of us are aware that breast cancer exists, and the pinkwashing is often unaccompanied by anything about breast exams or early detection or risk factors or anything.

Feeding tiny Claire in the NICU.

I guess people are less aware of the realities of spina bifida. SB is a congenital defect of the “neural tube” which is the part of a fetus that eventually becomes the baby’s head and spine. Claire’s neural tube didn’t close properly, and when she was born, she had 4 centimeters of her spine visible from the outside. As a result of this defect, things like nerves weren’t hooked up properly, so she has/will have certain amounts of disability in her legs, bladder, and bowels, in addition to hydrocephalus, or fluid building up in her head (which for many people with SB requires surgery to place a shunt and drain the fluid, though we haven’t had that yet). While her spinal defect was one of the more severe types, she seems to have good enervation and musculature in her legs, and her doctors and physical therapists believe she will walk and will only need braces to support her ankles, though some people with SB require more extensive bracing or even use wheelchairs.

I certainly didn’t know all of this or really much about SB at all, and it really wasn’t even on my radar until my birthday last year, when we went in for a 20 week ultrasound, excited to finally learn our babies’ sexes, and instead learned that the baby we’d later name Claire had SB. It was a really scary, sad day.

But the thing I needed awareness of that day wasn’t just “spina bifida” as some vague concept. I needed to be aware of the beautiful reality that would be my daughter’s life. Yes, we both had a rocky start. She had surgery at two days old. She was separated from me for 9 days. She was in the NICU for two weeks. She had to stay on her belly for 6 weeks while her back healed. But despite all of that, she’s really just a baby. They’re all very needy. They’re all very fragile. They’re all very tiny. They’re all amazing little creatures. If you looked at my two girls today, you might not be able to guess which one has SB.

If I could go back to last December 16 and make myself aware of anything it would be this: Claire is beautiful. She is funny. She is sweet. She has a radiant smile. She loves to eat. She loves her mama and daddy. She is exploring and learning and growing every single day.

I was so worried about all the ways she’d be different from her able-bodied twin sister, but the reality is, they’re both just babies. They are completely different and yet so very much the same. And almost all of my worrying was completely unnecessary. That is what I needed to be aware of: that there was nothing to be afraid of.

So, no, you likely won’t see NFL teams raising awareness for SB this month, or yellow covering all your favorite products in the name of raising funds. And while you may not personally know anyone affected by SB, now you know a little more about our story, and a little more about my baby Claire, who is special, just like everyone else.

Claire the Bear today.

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.