Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Happy Heart-a-versary to My Heart Warrior

Charlotte’s eleventh birthday was last Monday, though the celebrations began on April 30. By the actual birthday, Charlotte had had a slumber party (with cupcakes), a special date with Dad to see her Red Sox beat the White Sox (with ice cream), and fancy sushi with both of us (with ice cream x 2). On Monday, she had, as she has for at least 6 years, fried cod with chipotle mayonnaise and a homemade chocolate cake. The only thing she didn’t get was her annual birthday letter on the blog and a present from me.Today was a regular Monday. So regular, in fact, that I nearly forgot that it was Charlotte’s heart-aversary.

 

Eleven years ago today, Charlotte had her first open-heart surgery.  As I wrote in 2011:

“Today, we pause to celebrate–a bit more somberly perhaps, but with equal amounts of joy–Charlotte’s heart-a-versary.

 Six years ago today, we handed our teeny-tiny baby to the anesthesiologist. I remember him as being quite tall and having an Australian accent, but I was post-surgery myself so am an unreliable witness. He cradled her in his arms and we all walked to the operating suite. There we gave our baby, our hopes, and our trust to the great good team of Drs. Mavroudis, Backer, and Stewart. On the way to the waiting room, Philippe collapsed in my arms.
We waited. And waited. And then Dr. Mavroudis came to us smiling, telling us that Charlotte was back in her room and the nurses were setting up her meds. I think that was the first time we breathed all day.”
Last year, just three months after her third open-heart surgery, the significance of her heart-a-versary was not lost on me:

“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.”

We will never stop being grateful to the doctors and staff at Lurie Children’s. And we’ll never cease to be amazed when we hear another parent’s gratitude–as we did tonight when an acquaintance told us that her son (who has an 18-year old daughter) had his CHD repaired at Lurie Children’s. Every now and then, the enormity of what might have been washes over me. More than once I have been reduced to sobs–the tears that never came on May 16, 2005. The tears I couldn’t cry because I wouldn’t let myself think about what was really happening in that surgical suite. The tears Philippe shed, in full knowledge that the outcome might have been completely other.

We are so blessed to have this magnificent facility in our backyard. It was with this gratitude that Philippe, Charlotte and I, along with Charlotte’s first babysitter, Karley, and her Chicago grandmother, Jenny, and a host of other friends and friends of friends participated yesterday in Move for the Kids. Team Charlotte has raised $2,787 towards our $5,000 goal. In honor of Charlotte’s 11th heart-a-versary, please join us in supporting Lurie Children’s by supporting our walk. You can still donate to Team Charlotte (just click the link).

No birthday letter this year, but as always, we love you, Charlotte. May you continue to grow from strength to strength.

 

 

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Short (or Tall) and Sweet, An Orthopedic Update

If heart surgery didn’t stop Charlotte from running Move for the Kids 5K for Lurie Children’s last year, scoliosis sure won’t slow her down this year. And, since she’ll miss the Girls on the Run 5K for a school trip, she’s bound and determined to run the whole thing.

Last month Charlotte and I saw Dr. King for her annual scoliosis check up. We visited him at Lurie Children’s satellite office on Clark and Deming.

She measured a full 5’2″ tall. We weren’t surprised by that because she had been taller than Dr. Young at her cardiology check up the previous week.

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Charlotte in paradise. Maui, 2016

Charlotte’s x-ray showed no appreciable increase in her curvature. It remains about 5-7% curved, which Dr. King says many of us have without ever knowing it. He believes that if her curve stays where it is no intervention will be necessary. No surgery. No brace. I couldn’t have been more grateful to hear that as I had visions of Judy Blume’s Deenie swirling in my head. Yep, I know braces have changed a lot, but I still had those visions.

 

But, given that girls hit their growth spurts between 11 and 14 (don’t tell Charlotte that, she thinks that two inches a year is a “spurt”), he asked to see her again in 6 months.

Research connecting scoliosis, CHD, and thorocotomy/sternotomy is inconclusive. But I can’t help but think they are connected, based on anecdote. When Charlotte was diagnosed, her friend and fellow Truncus Arteriosus patient Jessica (who is a grown up) wrote to me that she had scoliosis also and suspected it was related to the surgeries she’d had as a child. Hers was diagnosed until intervention was too late and she suffers some pain.

Please support Charlotte as she Moves for the Kids to give back to Lurie Children’s and doctors like Eric King. Just click on one of the links above or on the photos below and make a donation, or register to walk/run with us.