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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Raising Awareness and Fighting Congenital Heart Defects

Cropped Heart

Charlotte’s Mended Heart (10/25/2013) photo credit: Dr. Jeffrey Gossett

(Full disclosure: This is a re-post of last year’s Congenital Heart Defect Awareness post except when noted by **)

In January 2005, our world was rocked and we thought it might come to an end. That was when Dr. Rudy Sabbagha informed us that our unborn child had a congenital heart defect. He was pretty sure that the specific defect was tetralogy of Fallot (*That’s what Shawn White was born with*). As my high school friend’s daughter, then 13-years-old, had survived a one-time repair for that defect and was thriving, I was relieved.  We later learned that the defect was Truncus Arteriosus, a far less common heart defect.  We also learned that only 50% of babies are diagnosed in utero with TA, so we felt lucky, in an odd way.

Our first online searches for support and information were unsuccessful.  Eventually I gave up looking. I started this blog, putting our emails online at first and then updating as we went for prenatal visits, when Charlotte was born, and throughout her surgery.

And then people began finding me and Charlotte. The first time a family posted a comment about TA, I got chills. Over the years we’ve collected about a dozen comments from parents who have found comfort in Charlotte’s story. Some of them have their own blogs and I try to keep up. Some of them stopped writing their blogs, and I feared the worst.

Today I want to highlight two people we have met through this blog, people whose CHD stories have changed my outlook:

Francie Paul gave birth to a healthy baby boy in August 2005. Or so she and her husband Brian thought. A few hours later, Joshua began turning gray, his oxygen levels plummeted, and he was rushed to Children’s Memorial Hospital.  The doctors determined that he suffered from severe complex congenital heart disease, which is a combination of several CHDs, and at four-days old, Joshua had open heart surgery. He had another surgery at about three months, and another near his third birthday.

Francie and Brian found themselves shaken and changed. They could have retreated to their home and become insular, handling Joshua’s medical issues privately. But they did not. Instead, they asked the doctors, “What can we do for other children with CHD?” They were told that the greatest need was research funding. So they began raising funds and in 2007 founded the Saving tiny Hearts Society.  Each year, Saving tiny Hearts donates its funds to a particular research project that is chosen by the medical professionals who received the previous years funds. In that way, the medical researchers choose the most important and promising research, and the philanthropists do what they do best, raise awareness and funds.

Francie somehow found our blog and called me. She has been not only a shining example, but a steadfast friend, touching base when she knows Charlotte has a surgery or procedure. She’s a pretty intense mom and person, and I admire her tenacity and drive.

As Brian notes in the Parade interview linked below, very few 35-year-olds have severe complex congenital heart disease, and very few 45-year-olds have Truncus Arteriosus.  We don’t know what the future holds for our children. We do know that there is a chance that either Charlotte or Joshua might need a heart transplant in their twenties or thirties. (I don’t like to think about that and don’t talk or write about it very often. I keep faith in the fact that her heart suffered no damage prior to surgery and we’ve had no complications between surgery. Joshua has been similarly healthy, thank goodness.) Brian and Francie have decided to aid the future by funding promising research and I applaud them.

Jessica Renshaw Hargis: Jessica is a young woman in her mid-twenties who was born with Truncus Arteriosus. Like Joshua, she was born seemingly healthy and was rushed to the hospital when she turned blue. She had her first repair at three weeks old and her second at three years old. After that she had few complications that I know about. Jessica found us when she was about 23-years-old. She was getting ready for her third repair (a valve and conduit replacement, or what we call a “tune up”) and was just beginning to wrap her head around managing her own health care. She was, in fact, having elective surgery so that she could do it while still well-insured.  Jessica had some post-surgical complications after that surgery (in 2009), but is largely doing very well. We had the pleasure to meet her in August 2009 and it warmed my heart to see Charlotte talking to a grown woman who shares her experience. While Charlotte and Jessica are as different as can be, they share something that we can never share–the understanding of what it is to live with a mended heart. We treasure our relationship with Jessica and her mother, and the friendship they reached out to give us.

*We are never not  aware of congenital heart defects at our house, though Charlotte says that she sees her scar and it feels more like a birthmark to her.  When Charlotte complained of reflux last night and told me she had sharp pains in her chest, my first thought was “Well, we haven’t had a heart-related emergency room trip yet. I guess tonight’s the night.”  Fifteen minutes later she was sound asleep. Today she told me that she knew it was reflux and that I shouldn’t worry about her heart unless she tells me to worry.  She, in fact, has the biggest, most generous heart I know.*

*Please consider linking to Saving tiny Hearts Society and making a donation in honor of the 2 to 3 out of every 1000 children born with a broken heart. Today they live and thrive because of research that groups like StHS helps fund*

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Move for the Kids 5K Benefiting Lurie Children’s Hospital

Charlotte ate an oyster and she liked it.

Charlotte ate an oyster and she liked it.

Just a reminder–it’s not too late to participate—in person or virtually—in this year’s Move for the Kids 5K benefitting Lurie Children’s Hospital (or Charlotte’s Hospital, as we call it).  Even the smallest donation will help the Children’s Service Board raise its stated goal of $40,000 for this year’s walk.  Last year the CSB raised nearly $120,000 and was the leading team and the leading affiliated organization on the walk. All proceeds donated through the following link will go directly to the hospital and be credited to the Children’s Service Board, benefiting our commitment to pediatric surgery.

So far our team has raised $636. With matching funds we’ll be at $966. Our team goal is $1000. Won’t you help us meet or beat it?

Everyone in Chicago has a Children’s story. And many of you have pediatric surgery stories at other wonderful pediatric hospital. I hope you’ll consider helping write the next chapter of Lurie Children’s with a donation. No donation is too small—I mean that.

Full disclosure–we’ll be participating virtually as we’ll be in NJ for my 30th high school reunion (I know…none of my dear readers every thought I could be that old!).  Team Charlotte’s goal is $1,000. Like the Children’s Service Board, we far exceeded our goal last year and topped out at $7,500. Now. Can we please see if we can meet the goal without the extra pus from Bamma.

Click here to join Team Charlotte and the Children’s Service Board as we Move for the Kids!


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Move for the Kids 5K Benefiting Lurie Children’s Hospital

Charlotte ate an oyster and she liked it.

Charlotte ate an oyster and she liked it.

I’ll be updating the blog this weekend; nothing major going on, just regular kids stuff like eye doctor visits and strep tests.

In the meantime, I want to invite you to participate—in person or virtually—in this year’s Move for the Kids 5K benefitting Lurie Children’s Hospital (or Charlotte’s Hospital, as we call it).  Even the smallest donation will help the Children’s Service Board raise its stated goal of $40,000 for this year’s walk.  Last year the CSB raised nearly $120,000 and was the leading team and the leading affiliated organization on the walk. All proceeds donated through the following link will go directly to the hospital and be credited to the Children’s Service Board, benefiting our commitment to pediatric surgery.

Everyone in Chicago has a Children’s story. And many of you have pediatric surgery stories at other wonderful pediatric hospital. I hope you’ll consider helping write the next chapter of Lurie Children’s with a donation. No donation is too small—I mean that.

Full disclosure–we’ll be participating virtually as we’ll be in NJ for my 30th high school reunion (I know…none of my dear readers every thought I could be that old!).  Team Charlotte’s goal is $1,000. Like the Children’s Service Board, we far exceeded our goal last year and topped out at $7,500. Now. Can we please see if we can meet the goal without the extra pus from Bamma.

Click here to join Team Charlotte and the Children’s Service Board as we Move for the Kids!