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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Won’t You Join Team Charlotte on May 15, 2016 and MOVE FOR THE KIDS?

You’ve been with us from the beginning, from the first emails we sent in early 2005. So, you’ve heard me ask this a lot—please help us support Lurie Children’s. Specifically: Philippe, Charlotte and I would like to invite local Team Charlotte members to join us at Soldiers Field on Sunday, May 15 for Move for the Kids 5K, a fun family outing that supports Lurie Children’s  and long-distance team members to support us as “virtual participants” (yes, that’s a thing!)MFTK 2015

We know that we are not the only family on this list who has experienced first hand the extraordinary care given by the doctors and staff at Lurie Children’s or had their child comforted by the patient-friendly surroundings of the new hospital. In fact, some of you have probably spent more time there than we have. Whether it has been a visit to the ER for an injury or illness, a tonsillectomy, asthma, allergies, or surgery, if your child has been a patient at Lurie Children’s, we’re pretty sure you understand why we are so committed to the hospital.

We have never been more aware of the power and importance of philanthropy than during our 5-night stay in the Regenstein Cardiac Critical Care Unit last year. The doctors and staff rely on philanthropic dollars to ensure that they can continue to care for any child, regardless of their ability to pay; to do cutting-edge research; and to recruit the finest minds in pediatric medicine. The hospital is truly a gift to our children, and to the 174,000 children from 50 states and 40 countries that it treats each year.

So…join Team Charlotte (click on the link) and walk or run with us! Strollers are welcome, but pets aren’t.

Team Charlote MFTK

Team Charlotte 2015

If you can’t walk or run on May 15, perhaps you’ll consider a donation to help us meet our Team Charlotte goal of $5,000?


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Give Kids a Hand Update

Chicago Lurie Stacked Squares

Chicago Lurie Stacked Squares (Photo credit: Atelier Teee)

About a year and half ago, I asked friends, family, blog readers, and Facebook pals to donate to Lurie Children’s Hospital’s Give Kids a Hand Campaign. As a lead up to the opening of the new hospital, the campaign offered the opportunity to put our mark on the hospital–with a $1,000 team gift, we had the opportunity to have Charlotte’s name on a tile that would be part of a mosaic mural, created in partnership with Project S.N.A.P, to be installed in the south entrance to the hospital. It was one in a series of fundraisers that made participation in the hospital’s growth accessible to people of a variety of means. And, it let families get involved by creating the art for each tile.

The result is a crowning achievement, installed on the hospital’s first birthday. It adorns the south entrance of the hospital and is a tangible reminder that this building was built by the community, for the community.

My goal was to get a tile for Team Charlotte–you wonderful group of Charlotte supporters who have read, watched, and cheered through her medical travails and her ongoing journey to regular kid-dom.  You ou did yourselves and we raised more than $7,500. Now, I wish that entitled us to 7 tiles, but since we only had one “team,” we get one tile. And here it is (the small image in the top left is the entire mosaic, the one with Charlotte’s name is her tile.):

Give Kids a Hand Tile

Want to get a closer look? Click here. Then enter my first and last name and choose “Lurie Children’s Donors” from the drop down. Or, visit the hospital.

Next week, to wish Lurie Children’s Hospital a “happy birthday,” there will be a viewing party, complete with tours of the hospital, on Thursday.

One of my revelations upon settling back in to Chicago is that everyone here is “two degrees from Children’s.”  In other words, everyone has a closer to connection to  Lurie Children’s than most of us actually have to Kevin Bacon. I meet at least three people each week who have  a story to tell, whether it is their own, their child’s, their mother’s (really), their neighbor’s, cousin’s, or friend’s–they range from the banker to the flight attendant to work colleagues  to parents at the Lycée to random acquaintances at all kinds of places and events. The connections are as common as stitches, fractures, ear tubes, allergies, and tonsillectomies. And, they are as rare as stroke, pediatric rheumatoid arthritis, brain tumors, heart defects, and sleep disorders.

It doesn’t matter how routine or rare a child’s medical needs are–to that child’s family the medical need is important and sometimes frightening.  As I often say, whether they giving your child anesthesia for a tonsillectomy or heart surgery, when someone wheels your baby away and puts them to sleep, it’s scary and it’s big.

The doctors and staff at Lurie Children’s Hospital know that. They’ve known it since Julia Foster Porter founded the Maurice Porter Memorial Hospital in 1882 to honor the memory of her 13 year old son. On the anniversary of the hospital’s 21st century evolution, I thank you all from the bottom of my heart for supporting Charlotte and the doctors that continue to keep her healthy. Truth is, she’ll never be completely regular, whatever that is, but to us she’ll always be as extraordinary as Mrs. Porter’s inimitable legacy.

Maurice Porter Memorial


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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!


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CMH Cath Lab, Or the Importance of Philanthropy

In early April, I had the distinct honor of attending the dedication of the new cardiac catheterizion lab at Children’s Memorial Hospital. Funds for the new lab were raised by the Children’s Service Board just before I joined the board. If I’m not mistaken, it took about $3 million. While I was not on the board when this gift was made, I was eager to see the new lab as Charlotte has had two cardiac catheterizations.

The new lab is inside the operating theater suite, allowing the cardiac interventionists to work even more closely with the surgeons. Because the lab is within the sterile suite, children can move from the lab directly to surgery if necessary and, if a condition proves truly emergent, surgery can occur in the lab.

Catheterizations are guided by sonogram and the camera now installed has 360 degree mobility, allowing for much more detailed views of the heart and better diagnosis as well as more precision in determining the success of a procedure.

We got to play with the IVs and other tools used for procedures such as closing VSDs, various stents, etc. (We only played with demonstration items–nothing that would be used on a kid!) Closing a VSD used to require open heart surgery; now the doctors can insert the patch via an IV, reducing the invasion into a child’s heart.

Dr. Jeffery Gossett, pictured here, delivered a wonderful presentation, then gave us a tour, and guided us through the different tools (or “toys” as he called them), showing us videos of each utensil at work. It was astounding. When we talk about the miracle of modern medicine, I think we really only know part of the story. What Dr. Gossett and his colleagues do on a daily basis takes a steady hand, intense focus, and dedication. It was a privilege to see even a little bit of his world.

Since we were all suited up in sterile gear, the nurse who coordinates the operating theaters, gave us the grand tour. I can’t tell you how moving it was to enter the operating room in which my darling girl’s heart has been repaired twice.

In case you’re wondering, the new equipment will be moved to the new hospital.

To see more and better images of our excellent catheter adventure, click here.

To learn more about the Children’s Service Board, please visit Childrensserviceboard.org.

SHAMELESS PLUG: To learn more about the new hospital and become a Hero for Life, please visit Heroesforlife.org.