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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Memories, Milestones and a Near Miss (bonus orthopedic update)

Facebook reminded me today that Charlotte spent October 25, 2012 at Lurie Children’s after her cardiac catheterization. While her heart-a-versary (May 16) never evades me, this date had slipped my mind. It was a blip,  a near miss in one way (as she wouldn’t need open heart surgery for another 2 years) and a reminder in another (it had been five years since her last heart intervention). Today, being reminded of Charlotte’s medical complexity on a day when all we had to deal with was typical adolescent anxiety was a gift.

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Charlotte is blessed with a mild version of truncus arteriosus, if a heart defect can be mild. She has no genetic syndrome (like Down Syndrome or DiGeorges, both closely associated with heart defects). She has no neurological, cognitive, or developmental complexities despite the strong correlation between congenital heart defects and ADHD, and between heart defects and learning disabilities.

But, while she has not had any surgical or heart complications (knock wood), she has not gotten off scot free. She is among the estimated 44% of CHD patients who develop scoliosis. So far, so good. her curve is at 5% or so and should not require surgery or a brace. (I did have her read Judy Blume’s Deenie this summer, just in case.)

We learned at her orthopedic appointment last spring, however, that she also has leg length discrepancy. That’s a fancy way of saying that one leg is significantly shorter than the other., the initial assessment indicated that there was as much as 2cm difference between the legs. Dr. King recommends surgical intervention for discrepancies +2cm.  The surgery requires two small incisions near the knee cap through which the doctor manipulates the growth ligaments on the longer leg to stop its growth. The surgery is timed so that the child will grow roughly as much as the discrepancy after surgery, letting the shorter leg catch up. There’s about a month on crutches and discomfort.

In October, Dr. King took special x-rays to measure each bone in the leg and determine just how big a discrepancy we’re facing. Special x-ray = laying a yardstick down next to the leg and then studying and measuring the resulting image. Not nearly as high-tech as I’d expcected!

The initial assessment indicated that there was as much as 2cm difference between her legs. Dr. King recommends surgical intervention for discrepancies +2cm.  The surgery requires two small incisions near the knee cap through which the doctor manipulates the growth ligaments on the longer leg to stop its growth. The surgery is timed so that the child will grow roughly as much as the discrepancy after surgery, letting the shorter leg catch up. There’s about a month on crutches and discomfort. They figure out the timing based on a hand x-ray that allows the doctors to determine the child’s bone age.

Charlotte and I had the same reaction to the news. We felt like we’d been punched in the stomach and resisted the urge to cry. As soon as we got home, I locked myself in the bathroom and wept like a baby. I couldn’t imagine my poor baby being surgically prevented from growing. And, based on her initial reaction, I knew that if she needed surgery we would be facing a different, and deeper, kind of anxiety than with her last heart surgery. The difference betwen 9 and 11 years old is significant in that regard.

About a week later, Dr. King called with the official results of Charlotte’s bone age study and leg measurement. The bottom line: the in-depth measurement shows only a 1cm discrepancy. So, for now, NO SURGERY FOR CHARLOTTE. Just six month check-ins until she finishes her growth spurt.

We  were all so relieved. A reminder of Charlotte’s forever status as a CHD patient, and a near miss in terms of another, new kind of surgery. And a chance to see just how like a giraffe she will naturally become. She’s topped 5’3″ already and towers over her friends, a cousin, and lots of adults.

With our gratitude to whatever powers continue to let Charlotte lead a regular life, our hearts go out tonight to Rosie Rose, a 12 year old who has been living with brain cancer since she was three. Today she had her tenth brain surgery (23rd surgery over all). She, her mom, and sister are the true warriors–living on their faith in G-d and using their spare time to raise money for Lurie Children’s and pediatric cancer. Please keep Rosie in your prayers.


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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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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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Flashback #6: Have You Heard Charlotte Tell Her Own Story? (#CHDAware, #TBT)

Without further ado, my post from February 24, 2015:

“Charlotte’s Story: The Road to a Healthy Heart”

Sometimes I’m so proud of my kiddo, I could just burst. This is one of those moments. She was asked earlier this month if she would contribute a blog post to “Life Inside Lurie Children’s: The Official Blog of Ann & Robert H. Lurie Children’s Hospital.” Despite the month she knew she had planned, she said yes. And she said it without hesitation.  We talked a lot about what she’d write, but she didn’t start drafting it until February 14, just 3 days after her surgery. She dictated it to me.

So without further, ado, I invite you to follow the link below to read Charlotte’s Story: The Road to a Healthy Heart. Or, read it below:

*Bonus for reading to the end–there’s a video)

February 23, 2015

Charlotte, age 9,underwent her third open-heart surgery at Lurie Children’s just days ago. She shares her story below in honor of American Heart Month.

Hi. My name is Charlotte, and I’ve been a patient at Lurie Children’s since I was 12 hours old. In January 2005, I was diagnosed when my mom was pregnant with me with a congenital heart defect called truncus arteriosus. I was supposed to be born in June, but I arrived a little bit early, on May 9. I’ve been going to Lurie Children’s for follow-ups my whole life. Continue reading


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Do You Know the Correlation Between CHD and Brain Injuries? (#CHDAware)

While Charlotte was in hospital last February, one of her PICU nurses, Carrie Alden, from 2005 stopped by. Carrie had recently returned to Lurie Children’s cardiology department from an outside position and when she saw Charlotte’s name on the CCU in-patient list she had to stop by. Of course she wanted to see her favorite patient, but she also wanted us to meet Dr. Bradley Marino, a pioneer in the subfield of cardiac neurodevelopmental outcomes.

He was clearly surprised and delighted that Charlotte attends, and excels at, a bilingual school. Chills ran down my spine when he explained: It seems that children with CHD suffer “neurodevelopmental and psychosocial impairments due to brain injuries related to their congenital heart defects.” These brain injuries don’t come from catastrophic incidents (this is not an episode of Code Black, it’s a “mommy blog”); they come from low oxygen levels and poor brain blood flow, as well as issues related to medical and surgical treatments.

Charlotte’s oxygen levels have always been above 90%, usually above 95% and most typically between 96-98%. We knew this was good because the nurses and doctors were always happy about it. And since they were happy, we never thought to ask why they were happy or what the problem with a low sat level might be.

Here’s what we didn’t know:

75 percent of these patients are at risk for language impairment, Attention Deficit Hyperactivity Disorder, executive dysfunction, visual processing issues, fine and gross motor problems and behavioral and emotional difficulties. More than 30 percent of these children require remedial services in school including tutoring, special education, and physical, occupational and speech therapies.

Sometimes ignorance really is bliss, I guess. Had I known, I would have worried. Instead, we followed the advice of a friend who had a friend with super-premies and had Charlotte assessed when she was 7 or 8 weeks old, immediately getting her into PT and feeding therapy. We panicked when a teacher (incorrectly) thought Charlotte had developmental or behavioral issues and sought a full battery of neuropsych, OT and developmental assessments. And then we followed the advice of the neuropsychologist and had her assessed again in third grade.

Turns out she has minor visual processing issues (that she seems to be outgrowing) and some fine motor challenges.

If Charlotte had had serious problems, we’d have been on top of them. But not because our cardiologist (who we adore), our surgeon (ditto), or any medical staff (again, ditto), suggested we do these tests and interventions. Because we followed the advice of another mom (it was well-reasoned and cost me nothing to follow), and the intuition (if flawed) of a master teacher.

That said, I’m am beyond grateful to the universe from sparing Charlotte further challenges related to her broken heart. And I’m beyond thrilled that Dr. Marino is heading the new (as of 2015) Neo-Heart Developmental Support Program at Ann & Robert H. Lurie Children’s Hospital of Chicago. I urge you to read about his great work, and a lovely patient he has helped, here. (All the quotes in this post come from this article.)

No CHD parent can say it enough: As more and more of our children live longer lives (my cousin is in her 50s), we need to make sure that they lead the fullest lives possible. The answer, as always, is research and outreach.

We are #CHDAware.


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Flashback #5: Bringing Her Home (#CHDAware)

Sometimes the words of a song are just the words of a song. A beautiful haunting lyric that draws you back over and over, but still just a song. Then, sometimes the same song hits you differently. Tonight, listening to Alfie Boe sing “Bring Him Home,” I felt the song as only a parent can. And as I felt the song, Charlotte laced her fingers through mine and whispered, “Chills.” Jean Valjean prays to God to bring Marius home, to let him live. Truly, those are the only thoughts that go through a parents mind when their child in on the operating table. Any operating table. I don’t care if the general anesthesia is for ear tubes, a tonsillectomy, a heart surgery or a lung transplant. When the doctors wheel your baby away, and you have no control….that’s the sentiment, the lament, the prayer.

And when they say to you, “Okay, you can take her home today,” you cry precious tears of relief. And realize how very lucky you are to hear those words, and no other words.

Last February 17 we heard those words. Yesterday, we were too busy jamming to Gloria & Emilio Estefan’s excellent and joyous On Your Feet to even think about it. Chills indeed.

So, for “throwback Thursday,” I give you Flashback #5: February 17, 2015:

Current StatusSitting in the living room playing Katamino waiting for sushi to be delivered.

Medical UpdateSitting in the living room playing Katamino waiting for sushi to be delivered.

But seriously, Charlotte was discharged around 2:30 today. The day consisted of removing the central line, which was a bit difficult but not nearly as traumatic and traumatizing as any other removal has been. In between crying that she couldn’t do it, Charlotte breathed (deep breath in, breath out “sushi”), and  giggled at Despicable Me 2. Once the central line was removed, she had to lie flat-ish for about 30 minutes. Then we went downstairs for a chest x-ray.

After the chest x-ray, we waited for the prescription delivery and to get the last peripheral IV out.  That last thing is what took the longest, and what made me the most proud.

Charlotte hates having things put in or taken out (can you blame her?) and she also dislikes having medical teams hover around her.

So, she insisted on taking the PIV out herself. Her excellent RN, Katie, sat on one side of the bed, Phil an I on the other. While Katie walked us through the discharge instructions, Charlotte worked on the tegaderm surrounding the IV. She worked and worked, listening to some Katy Perry and Taylor Swift. She vacillated between “I can’t do this” and “I’ve got this.”  The last little bit was really difficult. Both Katie and then Holly, the APN on duty, helped Charlotte strategize how to approach the tape.

Finally, she got all worked up, “I can’t do this. I’m never going to be able to do this.” Then silence, then “Oh, it’s out.”

She did. The sushi is here. Have a good night, ya’ll.

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Charlotte heads home wearing sweat pants and fancy boots. Best combination ever. (Caption credit: Charlotte)