Charlotte's Journey Home

Just a Regular Kid, Sort Of


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On This Day….

How often can you say that you know exactly what you were doing on this day twelve years ago?  I can say that every May 16 I know exactly where I was and what I was doing on May 16, 2005.  You see, today is Charlotte’s heartaversary, the anniversary of her first open-heart surgery.

I remember handing the tiniest bundle, all of 5 lbs., to the tallest anesthesiologist you can imagine and hearing him say, “We’ll take good care of her.” I remember thinking how kind it was of him to carry baby Charlotte in his arms, rather than wheeling her away from us. Somehow it affirmed for me that the doctors would see our baby as a person, not just a heart to fix. I remember turning from him and thinking that the hallway leading out of the surgical suite and to the waiting room was the longest, whitest hall I’d ever seen. And, I remember that before I could complete that thought Philippe let out a sob and his knees buckled. I remember catching my husband so he didn’t crumble to the floor. I remember.

I remember Sharon, the attendant in the waiting room, and her concern for us. And guess what, Sharon remembers us. I’m sure that when I walk into Lurie Children’s tomorrow, where she now mans the security desk, she’ll ask how Charlotte is. I remember Julie, the APN, coming to update us. And I remember Dr. Gus Mavroudis walking toward us, pulling off his surgical cap, smiling and telling us that Baby Charlotte was on her way to recovery. I remember.

I remember walking into Charlotte’s PICU room and being overwhelmed by the site of our tiny baby, barely visible on the warming tray, surrounded by machines and covered in bandages and wires, swollen like a balloon from the fluids, eyes closed.I remember Nancy Smith, Charlotte’s lead nurse, telling us what each machine was for, each medicine. And I remember needing the nurse in charge of each of the next few shifts to repeat all that information because I couldn’t remember. I remember rubbing the crown of Charlotte’s head–it’s all we could reach–and wondering if she’d ever come home with us.

I remember all this and more. But I don’t remember the emotions. I channeled my energy into telling Charlotte’s story, never really admitting that her story was my story and Phil’s story, too. I poured my world onto the page and hid behind my camera. I kept myself arm’s length away, maybe trying to protect my heart. I’m working on that now, hoping to put those emotions on the page and turn them, mingled with this blog, into a book that will help other parents.  Why? Because Francie Paul invited me to the most amazing event, the Tillman Foundation’s TendHER Heart Luncheon, honoring mothers of children with complex medical conditions, mothers who got to bring their babies home, and mothers who didn’t. I’ve been grateful to Francie for many things over the years, but for this gift above all. Not only did I find two “heart mamas” to sit with during lunch, but I got to hear the inspirational words of Stefanie Boyce, who not only summed up what each of us had gone through in our unique ways, but who did so lyrically and with grace. If you read nothing else this week, read her essay “I see you, mama: A word for mother’s navigating a different dream.”  Philippe and I have been navigating a different dream. And we’re so grateful that it is interwoven in so many ways with a “regular dream.” Stefanie

In many ways, maybe most ways, it is Charlotte’s story. And it has a happy beginning (she’s only twelve, ya’lll, she IS just beginning). Tomorrow that 21″ long, 5 lb. baby will run in her first track meet (and she’s now at least 5’6″). She’s good. She’s better than good. She rocks.  But, at her request, this blog will only tell her story now with her permission and her review. Otherwise, when I post it will be my story, my journey to being a regular mom.  I welcome your input at any time.

Want to know how May 16, 2005 went down? Click here.


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Sometimes You Look In the Rearview Mirror

Charlotte is off at her first full day of fifth grade. How did that happen? No, really, where did the time go?

I’ve been a negligent blogger, largely because co-chairing the 60th Gold Coast Fashion Award Show has taken more time than anticipated because we’re inventing an entirely new event. We’re in the home stretch and as I did some research to fact check our program book, I came across the following post.  It’s been a long time since I did an A-Z post, but if I had to write a new one, it wouldn’t be much different than what follows. I’m certainly less angry and weary, but the emotional response to Charlotte’s medical complexity still lies below the surface. I don’t think about it often because I’m way too busy hanging with my 5’1″, funny, sweet, happy FIFTH GRADER. How lucky are we?

(Your reward for reading the whole thing? Photos, of course!)

How I Am, From A to Z, On Charlotte’s 5 Month Birthday

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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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Measuring Up, or Heart by the Numbers

We measure Charlotte in many of the same units that most parents measure their kids–inches and pounds (or centimeters and kilograms). We measure her life, as most parents do, in units of years, whether her own years or school years.

As of August we now also measure her in terms of percent of spinal curvature as we track her juvenile idiopathic scoliosis.

Mostly, though, we hold our breath for the one to two times a year when we measure her by the opening of her pulmonary conduit and the velocity of her blood flow. These are the measurements that remind us that Charlotte will be a heart patient for the rest of her life. These are the measures for which we hold our breath and after which, most of the time, we give a deep sigh of relief and then have lengthy, nervous conversation with Charlotte’s cardiologist. How many parents worry about their child’s blood flow velocity or medial measurements? More than I’d like to think about, I’m sure. But it still gives me pause each time we visit the incomparable Dr. Luciana Young. These are the measures that have led me to measure my life by our contributions to Lurie Children’s Hospital (more about that later!).

That time of year came again last week.

Lurie Children's Hospital Photo Op Spot-(9/26/2013)

Lurie Children’s Hospital Photo Op Spot(9/26/2013)

The good news is that Charlotte’s measurements have not changed since her February checkup. The sobering news is that her measurements, specifically the diameter of her conduit, are good, but not as good as Dr. Young would like to see them.  The cardiac catheterization last October did a great job, quadrupling the size of the opening. However, she continues to have stenosis in the conduit.  We’re hopeful that her numbers will remain stable for a while. (I didn’t write down the actual numbers. If you’re dying of curiosity, I’m sure we can get them.)

If not, we’ll talk to Dr. Gossett and pray that another catheterization or even a stent procedure can buy us time until the next repair.  Truly, eight years old is proving to be an emotionally delicate age and I worry that the need for further medical intervention could be quite traumatic for Charlotte. So, these will be the numbers for which I’ll hold my breath in February and pray that we’ll have bought another year–another year of growth and another year of maturity and understanding.

For now, we watch and wait. Next check up in 6 months.

Meanwhile, for the truly astounding numbers: Charlotte has grown 2 inches since July! She measures in at an astounding 4’7”. She’s no longer the very tallest in her class, but her height continues to stun me.


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Meeting Dr. King: A Best Case Outcome

On Monday, Philippe, Charlotte, and I went to meet Dr. King. Not the one we’ve been celebrating all week, of course. Not even his cousin, I don’t think. Dr. King the orthopedist.

Because it floored me, I have to start with the least important information: Charlotte clocked in at 4’7″. I think this is at least an inch taller than her annual check up last month.

On the scoliosis front: Charlotte was examined by Dr. JP Manolo, a resident. He was thorough, kind, and smart.  He took notes, told us what he found and what he was looking for. He explained the different kinds of scoliosis (infant, youth, adult). His conversational tone put us at ease and he observed Charlotte as he spoke. While he was clearly going to examine her, I think he had decided on first glance that he wasn’t looking at anything frightening. So he set about setting us at ease.

Then he examined Charlotte. First, he had her touch her toes. Charlotte has had tight hamstrings forever, so this part of the exam is hard for her–simply touching her toes without bending her knees is a challenge. He measured the curvature in her spine with a device that looked like a level with a half moon cut out of it. And he found a 7% curvature.  Then he sent Charlotte for an x-ray.

Don't you love that they have thought to protect all of her reproductive parts?!

Dr. King came in with Dr. Manolo to explain the findings: Charlotte has a 15% curvature in her spine. This is, he said, “just a number.” 0-10% is “not diagnostic.” 10-30% is considered mild, 30-45% is moderate and >45% is serious, requiring surgery. He noted that +45% is rarely seen in children who don’t have serious underlying  medical issues. Charlotte’s curvature may be related to the truncus arterious and thus be “embryological” or it could be related to the cracking open of her ribs for repair. till related to the TA, but more a result of a surgical interruption in regular growth.

15% requires observation. We’ll go back in about 6 months. At that point, the 15% becomes a baseline and Dr. King will determine if the curvature is progressing or holding steady. He noted that more than 30% would require a brace, but that the doctors understand the repercussions of bracing an adolescent (Deenie, anyone?) and they try to avoid it.

At this point, there is nothing to do. No exercises can prevent or stem the curvature. I think our relief was palpable. I’m quite surprised we didn’t giggle.  All in all, it was another wonderful Lurie Children’s Hospital experience, and not just because we got the answer we prayed for.


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Charlotte Celebrates the 50th Anniversary of the March on Washington

Okay, my title may be a bit misleading. I’m not sure how much attention Charlotte is actually paying to this weekend’s coverage for the 50th anniversary of the March on Washington and Martin Luther King, Jr.’s “I have a dream” speech. But, if she were asked about it and what it meant, she’d know. Why? Because she had an extraordinary English teacher in first grade.

In celebration of MLK Day, 2012, Charlotte’s class learned about the Dr.. King, what he sought, and what he taught. Afterward, all the children wrote letters to the Dr. King. This is Charlotte’s:

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“Dear Martin,

Thank you Dr. Martin Luther King for making Peace, Love and Dreams. Sharing Dreams to do that is everything I can ask for. I think your amasing [sic] work has done so well. To me your [sic] the best and your dream came true all over the world. I belive [sic] in your success for changing the bad laws for everyone. Kids, grown-ups men, women, baby girl and boys . Booooooooooo hate! Yeh love boo war yeh peace.

Yours, Charlotte”

I’m not saying her grammar was perfect. And certainly at 7 years old, she had some spelling to learn, but I was so proud of this letter. I only wish that her belief in the worldwide fulfillment of Dr. King’s dream were true. And I wish that her current belief, that if children were allowed to negotiate we’d have world peace in a jiffy, were true.

I relish that she does not yet understand hate, and is not yet aware that in some countries there are children who are forced into waging war and killing others, or forced into prostitution. She knows, but doesn’t “get,” that there are kids who don’t have enough to eat, don’t get to go to school, and struggle in ways she’ll never understand. I hope her innocence and ideals last a bit longer.

I fervently hope that together Charlotte, Philippe, and I might see Dr. King’s dream come true. And I hope that Charlotte’s newest goal, “to be responsible for world peace,” is one she can stick to!

Rest in peace, Dr. King. Your dreams and words live on in our hearts.


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Charlotte Digs Dirt

Literally.

And she thinks it’s really, really fun. She calls it “Helping Mommy” and is happily occupied while I garden.

She also loves her water table or “bathtub,” as she calls it. This is a little technique she calls, “Scoop it up. In the hair.” We would like to thank our Feeding Clinic team for that–it’s a variation of “Scoop it up. In the mouth” used to encourage her to open her mouth wide.

Other Charlotte-isms:

  • Our little miss refuses to say “Charlotte.” She prefers to call herself “you” or “yo,” if she’s feeling really silly. She can say “Charlotte.” She chooses not to and likes to tease us.
  • She likes me to sing to her. If you’ve heard me sing, you know that her taste is a bit off. She especially likes if I make up silly lyrics to songs she already knows.
  • Other favorite things to do (I asked her) are: atch Elmo DVD (Not a typo, that’s what she said. Not that she gets to do it very often.) ; playground; play Elmo-Cookie (Translation: play with her Elmo-Cookie magnadoodle. Thanks Blackketter clan!) ; paint; unning (Again, not a typo).
  • Finally, she’s a huge fan of the author/illustrator Jon Muth. The kid has kind of advanced taste! We read Stone Soup or Zen Shorts nearly every night. (Again, thanks to the Blackketter family!) She also really digs Mo Willems (okay, who doesn’t?), but she’s still a bit afraid of Leonardo the Monster. Go figure. Like every literate 2-year-old, she LOVES to tell the Pigeon that he can’t drive the bus. Don’t know what I’m talking about? Get thee to a bookstore or library immediately. Do not pass go. Do not collect $200. Go. Now. (Our friends give her the best books. Thanks to the Skopickis and Caros for Mo.)
  • She likes chocolate milk and strawberry milk. Proving without a doubt that she’s our kid.
  • She’s in the parrot phase of language acquisition. Now I really have to curb my truck-driver language. (no aspersions to truck drivers intended)

There’s so much more that delights us each day, but I don’t want to bore you with the details. Suffice it to say, she’s kind of a regular kid these days. Hallelujah!

Stay tuned tomorrow for a Feeding Clinic update. (She drank 780 today!)