Charlotte's Journey Home

Just a Regular Kid, Sort Of


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The Ripple Effects of Living with Congenital Heart Defect

I usually blog and post a lot during Heart Month, but not this year. It’s not that Charlotte is any less a heart patient, or that we are any less aware on a daily basis of how her heart history affects our lives. Rather, I think we are more cognizant of knowing what we don’t know.

 

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Catherization image by Dr. Jeffrey Gossett, Oct. 2012

Truly, the ripple effects of CHDs are mysterious—they creep up on us and smack us over the head in very powerful and emotional ways. Ripples don’t have to be about Charlotte’s physical health. They can be about my emotional health (have you ever had to pull over in the car and sob because you suddenly flashed on all the hard things you and your child endured 12 years ago?) or her cognitive or emotional development (have you ever had to consider how being cut up as a baby might subconsciously affect your child’s ability to navigate adolescence?) or her psychological development (hmmm….as her body changes how do all of those scars affect her self-image?).

 

These are not only our mysteries. The neurodevelopmental outcomes of CHDs are a new area of subspecialization. Dr. Bradley Marino recently opened a research center at Lurie’s Children that looks at neurodevelopmental outcomes for infants through toddlers. That leaves us wanting longitudinal research that will help us understand what obstacles our super-bright kiddo might have to overcome to achieve all that she wants to in life.

For 12 years, we were confident that every medical decision we made was well-considered and necessary. We had the very best possible partners in Charlotte’s cardiologist, Luciana Young; cardiologist interventionist Jeffrey Gossett; and her surgeon, Carl Backer. 2016 was a year of big changes for Team Charlotte the year of change: Dr. Young has moved to Seattle, Washington and Dr. Gossett has moved to Los Angeles. Dr. Backer is still here—thank goodness!—but chances are quite good that Charlotte will never need another open heart surgery. Her next procedure would likely be a catheterization. And while we don’t think we’ll need more than annual check ups for years, change is change. And change, like those ripple effects, leaves us in uncharted territory.
So, in honor of Heart Month, I’ll enumerate what we do know. Charlotte is a heart patient. She is one of about 40,000 children born each year with a CHD. According to The Children’s Heart Foundation, CHD is the most common cause of infant death due to birth defects. Some of those children die before they are diagnosed.

Charlotte is one of the lucky ones. She is a best-case outcome Truncus Arteriosus Type 1. She does not have any associated chromosomal deletions or syndromes. If you didn’t know she were a heart patient, you wouldn’t know she is a heart patient. In fact, my guess is that most of her classmates don’t remember her surgery in 4th grade and that none of her middle school teachers knows her health history.

She’s had:

–3 open-heart surgeries,

–two angioplasties,

–one diagnostic catheterization

–G-tube placement surgery.

Complications* (more than likely) related to her CHD include:

feeding issues that resulted in a gastric feeding tube for 3 years,

–reflux (with as many as 8 changes of clothes a day);

–gross and fine motor delays as a toddler;

–plagiocephaly resulting in a helmet;

–lower than normal visual processing speed;

–and scoliosis

 

It seems like a big list. Compared to other children we know—heart patients and cancer patients and CP patients—it’s really nothing. And, like I said, we can forget about it for days and months on end. But, it’s still a lot. A lot for a 12 year old to process when she sees herself in the mirror. A lot of mystery to add to the mysteries regular kids face.

So, thank you for learning a bit about the CHD kid in your midst. She’s unique because of her heart. But she’s special because of her heart. (More on that soon.)

 

 

Half a Decade of Charlotte!

Charlotte, May 2005, before her first open heart surgery.

 

*Complications that we know about to date and that Charlotte is okay with us talking about

 

 


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On the 366th Day We Rejoice, A Cardiology Update

For most of the year, we can ignore that Charlotte is a heart patient. She keeps up with her friends, grows so much that we forget the terrible “failure to thrive” days, and seems about as regular as the next kid.

That was different last year, of course, since she had to take a break from her regularly scheduled awesomeness to awe us with her post-heart surgery resilience. Charlotte recovered beautifully and returned to regular activities on schedule. She trained for a 5K and took tennis lessons. Once her surgical wounds had healed, she moved on. Sort of. If we didn’t talk about the scar. (That’s another story for another day. Suffice to say that a preteen girl is self-conscious about a new scar.)

Then she had her six month check up and the scar began to fade. In the past few months, the surgery has become an anecdote. “Remember when I was mean because I was taking Dilaudid?” “Remember what I said when they removed my breathing tube?” “I didn’t mind the hospital so much. I got to have pudding for breakfast and got lots of presents.”

Yesterday we were reminded, as we are each year, that heart surgery isn’t the stuff that normal childhood memories are made of. It’s real. It’s traumatic. It’s serious. But, it also gives us the chance to visit with the excellent Dr. Young and the incomparable Elizabeth Capella, LPN.

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I’ll spare you the thousand words–what you see here is a perfect heart. Or at least as perfect as Charlotte’s mended heart will get. Her bloodflow velocity holds steady at 2.5 (normal is around 1.8; this elevation is to be expected given her conduit). She has no evidence of stenosis or other complications And best of all, while Charlotte was terribly uncomfortable with the idea of a male sonographer, she took a deep breath, focused on the Harry Potter movie and let Mr. Peng take her pictures.

We’re back to annual check ups.

Team Charlotte, gear up for Move for the Kids 2016. So much to celebrate. Charlotte dares you to RUN it with her. Click to join Team Charlotte, or donate if you can’t participate.

MFTK 2015

 


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May His Memory Forever Be For a Blessing

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Christopher Saucedo’s World Trade Center as a Cloud, No. 4 is part of a papier-mâché series on display at the U.S. District Court in East Brooklyn through mid-November. Learn more by clicking on the photo.

The challah is churning in the breadmaker for a neighborhood Rosh Hashanah celebration this evening and I’m about to light a yarzheidt candle. I can’t help but think of 6 meaningful Shabbats shared with my friend Jeffrey at JFTY Urban Mitzvah Corps, countless High Holidays listening to his dad in our synagogue choir, confirmation class shenanigans, and an adolescent friendship that meant so very much. Thirteen years later, all I can do is repost this and say, Jeffrey, we’ll always miss you. Not just on 9/11, but every day.

Jeffrey B. Gardner died 6 years ago today when the World Trade Towers collapsed. I had known Jeffrey for as long as I can remember, growing up in the same town (Livingston NJ) and attending religious school at B’nai Jeshurun together.
More than a boy I grew up with, Jeffrey was a dear friend throughout my high school and college years. We were both socially conscious teenagers and active in our temple youth group and in JFTY, the Jersey Federation of Temple Youth.
Like all of the people who have signed his guest book, I can attest to Jeffrey’s special qualities–his goodness, kindness, wisdom, and sense of fun. I can also recall his pride as he listened to his father sing in the temple choir on the high holy days, his clear affection for his siblings, and his love for his mother.
Jeffrey and I, along with 20 other Jewish teens, spent a special summer together in 1982. As part of the JFTY Urban Mitzvah Corps, we lived in a fraternity house at Rutgers (later Jeffrey’s alma mater) and volunteered for various organizations in the New Brunswick area. We worked with the elderly, disadvantaged children, and the disabled. In the evenings we studied and played, enriching our Judaism and bonding as a group in a way that is immeasurable. Jeffrey lived his Jewish values and he taught us how much fun (and mischief) we could have within the limits of a moral, thoughtful life.
My father had a special place in his heart for Jeffrey. Not just because they were in the same business, but because Jeffrey was respectful, forthcoming, and friendly. In business, my father could count on Jeffrey, just as I could count on him as a friend.
Since Jeffrey’s death, I’ve learned that he continued to live those values for the rest of his far-too-short life. He read the Christian Bible and the Koran in order to understand other people’s belief systems. He volunteered with Habitat for Humanity throughout the hemisphere. He worked hard at his career and prospered.
In his obituary, his sister Amy noted that he had a sun tatooed on his ankle because “a good day was as bad as it got. ” Jeffrey shone like that sun. Even when we weren’t in touch for a long time (we hadn’t spoken for about 3 years before his death), I felt his presence and the mark that he made on my life.
On that perfect sunny September morning, a day eerily like today in Chicago, hatred hilled Jeffrey. The irony that intolerance killed a soul who embodied tolerance is not lost on me.
I dedicate today to Jeffrey–as sad as I am for his loss, I strive to live a life of which he would have been proud, to be tolerant and kind and strong as a tribute to his memory.
Rest in peace, dear friend. You are indeed Z”L (Zichrono Livracha), of blessed memory.


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Charlotte’s Corner: Happy Father’s Day

Let me just start by saying congratulations to my dad for his 10th Father’s Day. That’s pretty much a way to say both that I just turned 10 and that my dad is old. I’m not saying that that makes him any less awesome. And I’m not going to. After all, my parents have been lecturing talking to me about lying lately and saying that he wasn’t awesome would be much more than just a little fib. It would be HUGE GIANT  GINORMOUS!!!! He is the most awesome dad in the world. Of course, all girls think that their dads are the best. But I have never ever in the world met a dad that was more awesome than mine.

Funny Daddy

My dad is not only awesome, but also funny. I’m not going to talk about every occasion, because that would take all day week month year century. Here’s just one of the times when he was the most humiliating and hilarious person in my life:  At my birthday party, I had a slumber party and I took all my friends bowling. When it was someones turn, he’d sing their names like an opera song. For instance, Charlooooote! And my dad has this big, loud, deep voice so I’m pretty sure everyone from where we were to ten rows down heard him.

Inside Out

Tomorrow, we are going to see Inside Out. It is so popular. There is even an Inside Out Disney… something or rather. I’m really exited to see it. So is Dad. I really have nothing else to say.

The End

I hope everyone got the message of this blog post. If not here: My dad is awesome.

 

 

THE END 

 


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10 Years Ago Today

As I made my coffee a few minutes ago, I was struck by the date. Ten years ago today, I clutched my coffee in a paper cup as Philippe and I awaited hourly updates from Julie about our tiny baby daughter’s first open heart surgery.  Goldman-R1-048-22AThe day had begun excruciatingly early for a mom recovering from a C-section. We arrived at dawn at the hospital and, shortly thereafter, handed our bundle of seven-day-old love to a very tall anesthesiology fellow who promised to care for her as if she was his own. We turned to walk down the stark white hall of the surgery suite towards the waiting room and Philippe nearly collapsed in my arms, overwrought with concern and fear.

Today, Philippe was, as usual, up with the sun. I’m savoring my coffee on the front porch in my favorite kitty mug waiting for him to come home from doing some early morning errands. Charlotte is upstairs, sleeping or reading. I don’t know, I haven’t seen her yet. I do know that she is safe, sound, and healthy thanks to the doctors that cared for her on May 16, 2005–Drs. Carl Backer, Gus Mavroudis, and Bob Stewart.DSCN1268

In our deep gratitude, all three of us will participate tomorrow in Move for the Kids 5K in support of Ann & Robert H. Lurie Children’s Hospital of Chicago. Just 3 months after her third open heart surgery, Charlotte–now a 5″ tall 10 year old–will run the race with her Dad, Dr. Luciana Young (her cardiologist), and several of her classmates. I’ll walk with Charlotte’s teacher, Alexandra Mignet, and several other classmates and their parents.

Team Charlotte is halfway to its $5K for 5K fundraising goal. There is still time to support us! You can click the link above or the image below and donate OR you can find us at Tent #10 tomorrow around 8:30 a.m. (full race details on the race site), register on site, and walk/run with us.

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With Dr. Young

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Dr. Backer

Team Charlotte walks as part of the Children’s Service Board. For the 4th or 5th year in a row, the CSB is the leading fundraising group for the walk. We thank you for keeping us in the lead. And, moreover, for helping Lurie Children’s make it 75% of the way to its fundraising goal for tomorrow.

MFTK 2015


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Happy Birthday, Charlotte!

On May 9, 2005 darling Charlotte came into the world four weeks early. On May 9, 2006, I started my blog tradition of a letter to Charlotte on her birthday. In a perfect world, the letter would have been written and posted last night. Our world, however, is not perfect, so she’ll have to read it tomorrow!

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My dearest Charlotte,

My mind cannot process the fact that you are ten years old today. What a magical and frustrating age (for you and for us, I’m sure)! You still have one foot firmly grounded in childhood–as easily awed by the wonders of the world as you are amused by my (sometimes lame) jokes, as eager to please as you are quick to anger and frustrate, and as creative, strong, and kind as you ever have been. Your other foot is on the edge of your biggest journey, into adulthood. I can see that it frightens you a bit, the vast future in which you need to figure out who you’ll be and how you’ll get there.

While the road ahead may be frightening, it will hold as many wonders and as much love as you let it. And there will be potholes (the first of which we hit, literally, on the way home tonight).  You have already traveled further than many ten year olds. You have proven again and again that you are a survivor with a healthy sense of humor. Don’t believe me? Just take a look…

First Birthday  On May 9, 2005, we gave you a cupcake, Karley took a photo, and we went out to dinner (without you) to celebrate having survived a year that included premature birth, heart surgery, 49 days in the hospital, g-tube insertion, cardiac catheterization, and a cranio helmet, not to mention countless vomits, physical therapy, feeding therapy, meds, and more. You were thoroughly unimpressed by the cupcake as you were still largely tube-fed and tiny. A few years after this picture was taken, I finally realized just how scrawny your legs were and how huge your eyes looked in your head. You were (and are) our darling, energetic, bright star; we never saw what others saw–that your legs looked like skin-covered toothpicks. Only looking at this photo now can I understand the concern with which people always asked about your health.

Today’s photo says it all, and yet says nothing. You are still our shining star. And now you know it and ham it up as often as you can. We began your special day with a trip to tour Frank Lloyd Wright’s Robie House because you were inspired by Blue Balliet‘s The Wright Three. Then, instead of your regular cod with chipotle mayo birthday dinner, we took you to our favorite upscale casual restaurant, Summer House Santa Monica. DSCN1414

What this picture doesn’t show is how brave and strong you are or how similar and yet how different this past year has been from that first year. Again, you’ve had a cardiac MRI and open heart surgery. (That broken pinky is nearly forgotten). This time, you kind of diagnosed yourself and let us know something was wrong. There was no drama and you had a textbook recovery. You courageously shared your surgery with your classmates, and in turn they showed you unparalleled compassion. That’s the big stuff. On the smaller side, you went to sleep away camp for the first time, mastered long division, and proved that you can learn a hard piano piece if you put your mind to it. You’ve taken your chess game to the next level, played the piano for charity (the week of your surgery), and given your Belgian grandmother one of her best ever Christmases. My heart skipped a beat when you put change in the tzedakah box this morning, saying that you didn’t feel right keeping Jenny’s entire $10 gift for yourself.

Best of all, you greet nearly every day with a smile or a full on giggle. Ever since you were a baby you have seemed to sense how precious a gift each day is.

So, my darling girl, as you step onto this road ahead, know that you will grow back into the comfort you have with your scars. They do not define you–they decorate you much as the medals on the epaulets of a soldier’s uniform do. You have won the battle, with the help of the inestimable Team Charlotte.

This year Team Charlotte is too vast to mention, for fear that I’ll leave out some wonderful nurse or tech at Lurie Children’s Regenstein Cardiac Care Unit. Thank you all, from the bottom of our hearts.

Charlotte, may you ever grow from strength to strength. And as I tell you each day on your way to school, be calm, curious and creative and remember that I love you, all day, every day.

MFTK 2015

On May 17, Charlotte will be RUNNING a 5K, Move for the Kids, to raise money for Ann & Robert H. Lurie Children’s Hospital. Charlotte chose this race, which she’ll run with her dad and her cardiologist, to mark her full recovery. Please click on the icon to support Team Charlotte. And register to walk or run with us!


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For the First Time In Forever, A Cardio Check-Up Report

Watching her skip to the car this morning, I struggled to remember that six weeks ago today Charlotte underwent her third open heart surgery. But, it was 7:00 the morning and we were headed to see Dr. Young for Charlotte’s post-op cardiology check up.

After patiently lying still for the shortest EKG in history and watching “Frozen” for 30 minutes during the echo, Charlotte eagerly awaited Dr. Young’s verdict: Could she resume her full activities, and then some? Or not?DSCN1265

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I’m not sure who is happier, Charlotte or Dr. Young.

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Charlotte and another original Team Charlotte member, the excellent Liz Capella, APN extraordinaire.

Dr. Young’s exact words: “I’m really pleased with what I’m seeing on the echo.”  The conduit and valve are working nicely. She is seeing some turbulence in the valve, but nothing that concerns her too much. Turbulence can be heard through the stethoscope, so Charlotte’s “thump-swoosh” may still be her defining sound. (She was concerned about that.)

Charlotte has Dr. Young’s full approval to return to her full activities, such as gym and (drum roll please) carrying her own backpack!

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After school, Charlotte couldn’t wait to get on her scooter, “For the first time in forever.” I have no words, really, for our gratitude.

We know how blessed we are that Charlotte continues to have best-case scenario outcomes. And we are so very grateful to Team Charlotte–the doctors and nurses who make sure that she continues from strength to strength and who clearly love their work. Please join us in our gratitude and Move for the Kids on May 17, in a 5K to support Ann & Robert H. Lurie Children’s Hospital of Chicago. Click below to join Team Charlotte. And if you can’t walk or run, please donate to help us reach our $5,000 goal.

MFTK 2015