Flashback #2: Partying through Pre-Op to Mend a Broken Heart (#CHDAware))

Every 6 months I go through the heart momma ritual: I brew a cuppa (today it was tea) and dial the cardiologist’s office to schedule our follow up. And today, that phone call topped my to do list. We have every reason to believe that it will be a routine visit, lots of images, and then a lovely chat with Dr. Young. But…no heart mother (or father) ever stops worrying or ever stops bracing herself for that other kind of appointment. In November 2014, we had that other kind of appointment. We expected it, anticipated it, and were still gobsmacked by it. Still angry at the injustice of our kid having to go through this kind of heartache, literally.

Today’s flashback will take you to February 9, 2015 the day before her scheduled surgery.

It includes a tribute to the children who made it clear that their hearts would hold Charlotte’s while she underwent surgery and recovered. I am grateful to them and their teacher every day. (Fair warning: I cried AGAIN when I watched the video.

February 10, 2015: Pre-Op The lead up to the pre-op appointment started in the most wonderful way. Charlotte’s classmates threw her a surprise party. While she was, I think, most thrilled with the gifts (especially an Equestria and Monster High Dolls), we were touched by the fact that the party was the idea of two of Charlotte’s classmates and the joy of the rest of them. The children put their hearts and souls into letting Charlotte know that they would miss her, that they will be thinking about her, and that she has an incredible network of support.

We spent the weekend playing with friends and generally not thinking about what was on deck for this week.

We also began a mindfulness practice late last week to practice breathing through fears, especially fears of needles.

This morning my friend Jeanne came to work with Charlotte, using an energy technique called EFT Tapping. Charlotte did as good a job as she could working with Jeanne, though she did lose focus once she realized that there were still crepes in the refrigerator. She did seem relaxed and ready for anything when we left the house.

Now, Jeanne and I realized that one tapping session and a few meditation sessions might not help her enough. But, Charlotte was willing and it was worth a try.

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I got a smile from her when I told her that Bubba was looking down from atop her head and smiling. I had to take this photo to prove it!

I wish I could say it worked miraculously. Sadly, no. Charlotte began to fall apart when it was time to change in to a hospital gown for the lung x-ray. The little tigers seemed babyish to her. Then the x-ray technician called her “sweetie” and told her she couldn’t hold Bubba during the x-ray. Charlotte’s dark side started seeping out. She was muttering, crying, on the verge of a meltdown. I snuck Bubba under her thumb and we got out of there as unscathed as possible.

She calmed down and seemed to set her mind to getting through the blood draw. Until we entered the room. I’ll spare you the details, you can get the general idea from the last time we did this. Truthfully, I’m sparing me the details. I don’t have the heart to write about this again. Bottom line–this time was a bit worse. We were better prepared; instead of a phlebotomist, we had a member of the IV team to do the draw. We called Child Life to distract. And still, Charlotte just couldn’t concentrate on hertools.We tried breathing. She didn’t want to tap, so I tried another technique Jeanne taught me, squeezing Charlotte’s finger tips while quietly talking to her. Eventually she said, “Mom, stop squeezing my fingers.” Sigh.

Eventually (maybe 40 minutes later?) the IV team member had to go to the ICU so she called cardiology and we went down to see the APN (advanced practice nurse) for our pre-op conversation. The nurse and Dr. Backer spoke while we went down and they decidedFullSizeRender-4that they could get the blood once Charlotte is under anesthesia tomorrow. It’s not ideal–it will add time to the procedure and the time that Charlotte is under anesthesia, but since they couldn’t sedate her today, it was the best we could do.

Maria, the APN, explained the procedure and risks and we asked a few questions. Then it was time to get lunch and head to Art for the Heart.

We got Charlotte to bed around 9:30 after a bath, watching Mirror Mirror and swabbing her whole body with special antibacterial wipes.

We are expected at the hospital at 6 a.m. tomorrow. We’ll keep you posted periodically. If we don’t answer your texts or phone calls quickly, please don’t take it personally.

 

 

Flashback #1: 18 Hours Before Surgery She Played a Steinway (#CHDAware)

I’ve just kissed Charlotte good night after finishing the very excellent The View From Saturday by E.L. Konigsburg. As we snuggled and talked about her upcoming school break, I couldn’t help but think how different February 9, 2016 is from February 9, 2015. Since this is CHD Awareness Week, and we are oh, so aware, I thought I’d repost last year’s heart updates, starting with the eve of the anticipated surgery.

In case you don’t remember, or are just tuning in, Charlotte was originally scheduled for open heart surgery on February 10, 2016. We had our pre-op appointments that day. And, then Charlotte did something amazing, she played piano to benefit Saving tiny Hearts Society.

Read all about February 9, 2015 and be #CHDAware.

Charlotte’s scars have nearly faded back to the silky white of February 2015, and she seems less self-conscious of them. But she stills feels different. Sometimes special. Always grateful.

 

Heart Month 2016: How Aware Are You?

While the “Charlotte’s Journey” part of this blog is on a sort of hiatus for the time being, I thought I’d use Heart Month to continue raising awareness of CHD and of the amazing Heart Center team at Ann & Robert H. Lurie Children’s Hospital of Chicago.

This video tells the heart-stopping (literally) and heartwarming story of Kaysen, a brave baby who survived a heart transplant when she was only a few weeks old. Watch it, and try not to cry. I dare you.

Years ago, my friend Francie Paul asked the cardiac-thoracic surgeons at Lurie Children’s what they need most. The answer? More research dollars. The Children’s Heart Foundation notes that for every government dollar spent on cancer research (very important research, and I certainly don’t begrudge them the money), less than a fraction of a penny is spent researching congential heart defects, their origins, and their treatment. Less than a fraction of a penny  for the leading cause of birth defect-related infant illness and death.  Let that sink in a bit. And then if you feel like it, visit Saving tiny Hearts Society to learn about how Francie and her husband Brian decided to combat that imbalance.

I’d love to hear your story about CHD. Please share it in the comments.

mended heart

 

 

Goodbye 2015, Hello Leap Year

I realized tonight that we never did our annual New Year’s post for 2015. Probably because we were in the thick of “countdown to surgery.”

So, let me be the first in my family to wish you a happy and healthy 2016. We will not be sad to put parts of 2015 behind us. But, in truth, we couldn’t have asked for a better year. Yes, Charlotte had her third open-heart surgery. And, yes, it was the first surgery she was old enough to be scared of and the first new scar she was aware enough to be self-conscious about. And yet…she crushed it, as they say. She came through with a smile (after the dilaudid wore off).

And once past it, Charlotte learned to ride a bike; traveled to Washington, D.C., Mexico, Cape Cod, Belgium, Amsterdam, New York and New Jersey; had her first sleepover party; and made me laugh harder than you can imagine. We’re proud of the incredible strength she showed during the first part of the year and hope she’ll realize one day what a warrior she is.

As a Truncus Arteriosus type I patient, we have learned, Charlotte continues to experience best-case scenario outcomes. She has had no emergent issues and suffers no contingent developmental delays (we just learned this year that we probably should have been prepared for severe learning and developmental difficulties). With that in mind, I have one thing to say as 2015 fades into memory: Thank you.

Thank you Dr. Backer and your extraordinary surgical team. Charlotte with Dr. Backer Thank you Dr. Luciana Young, for your friendship and amazing care of our daughter. Thank you Elizabeth Capella, for teaching Charlotte’s friends about her condition to make post-surgery school easier.
C and Doc YoungC and Liz

 

 

 

 

 

 

 

 

Thank you to Lurie Children’s Hospital and the Regenstein Cardiac Care Unit.Flock of DocsThank you to Charlotte’s incomparable teacher Alexandra Mignet and her 4th grade class for throwing Charlotte a party and Skyping with her while she was out. DSCN1235Thank you to Philippe and Team Charlotte for running the Move for the Kids 5K with Charlotte in celebration of Charlotte’s recovery and in support of “Charlotte’s Hospital.”

Team Charlote MFTK

And thank you to each and every one of you who never ever treat her like anything other than a regular kid. All things considered, 2015 was a good year.

Charlotte’s Journey Home began as a way to keep our family and friends informed throughout my pregnancy and in the first critical weeks and months of Charlotte’s life. Little did I dream that it would be a 10+ year endeavor. Nor did we realize that we would touch the lives of other parents of CHD children or of kids with severe reflux. Or find an adult role model for Charlotte, another Truncus Arteriosus patient (Jessica, that’s you). Or be befriended by a tour-de-force crusader for CHD research (Francie, you know who you are). It’s been a pretty good 10 year run.

As we head into the next phase of Charlotte’s life, she wants more privacy about her growth and life changes. And as there aren’t that many medical updates these days, it seems a good time to put Charlotte’s Journey Home on hiatus. We’ll be back when there’s a heart or medical update of import, or when we want your support for our endeavors on behalf of Lurie Children’s, or when we just are so proud we need to kvell loudly.

Until then, dear reader and Team Charlotte, one last THANK YOU for all the support you’ve offered our family for the past decade.

Three in Mexico

 

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!

Back to School, But Not Quite Back to Normal

Have you ever seen a conquering queen returned to her castle? It must look something like Charlotte’s reception at school yesterday. As soon as her classmates saw her turn the corner at the top of the stairs, several girls came running toward her to envelope her in hugs. As we approached the classroom, the crowd parted to let her pass. Her classmates peppered her with questions and other fourth graders stared and smiled. My heart swelled. It nearly burst when her teacher jumped out of her chair to give Charlotte a hug.  She was thrilled to be back at school, and school was clearly happy to have her back.

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Charlotte hard at work on a craft project dropped of by a friend of mine. She has been so spoiled for the past 4 weeks. Thank you, everyone.

Charlotte can’t carry her backpack for another month. I don’t know if you’ve carried a fourth grade backpack recently, but Charlotte’s must weigh 15+ pounds. It triggered the seatbelt alarm in my car this morning.  So, I walk her upstairs every day. In an effort not to disrupt class too much, I’ve asked for her to have help bringing it to the office. Her desk mates and dear friends Taylor and Annamaria have been helping, with big smiles on their faces. I suspect that will grow old eventually, but I so appreciate their support of our kiddo.

The APN suggested that Charlotte start back to school half days for a week or two. I picked her up at 11:30 a.m. and she was happy to see me, yawning all the way home. She didn’t nap, but she was definitely exhausted.

Same drill today. She wasn’t as tired when I picked her up, but our 1.5 hour wait at the pediatrician (for a post-surgery follow up) took the rest of her energy and she was in bed, fast asleep, by 7:32.

Still, she’s on her way back to her regular routine. And she couldn’t be happier about it.

Pediatrician appointment was truly unremarkable, except that Charlotte is now 59.75 inches tall. Look out, Jamie!

Learning About Truncus Arteriosus, or Why We Love 4th Grade

As Charlotte began to realize that she would be be missing a significant amount of school due to her open-heart surgery, she asked us if we could have Dr. Young or Elizabeth Capella speak to her class. We’ve discussed this idea for many years, especially the thought of doing it in February for Congenital Heart Defect Awareness Day. Until this year, Charlotte has thought it a great idea, but she wasn’t ready.

This year, however, by the time we knew that she would need an intervention of some kind, she’d already been fielding a lot of questions about why she wasn’t running around on the playground (though it turns out that the pain she felt in her chest likely had no correlation with her heart).  She doesn’t like the attention and didn’t want to give misinformation, so we spoke with her teacher, the most excellent Alexandra M., and picked a date.

I was not able to be there, which still saddens me. But, Phil caught part of the day on tape:

What he didn’t catch were the kids’ questions. And he didn’t remember them all, nor did Elizabeth. But, here’s some of what he told me they asked:

  • Can kittens have heart defects?
  • Will Charlotte feel the surgery?
  • How will they get to her heart?
  • My mommy said that people can get new hearts. And even new brains. (Okay, that’s not a question, but it cracked me up!)
  • How do babies get inside their mommies?

Most importantly, in the naturally narcissistic way of fourth graders, many of Charlotte’s classmates told stories of their own medical challenges–asthma, allergies, glasses, broken bones–or those of their family members. As Elizabeth, Phil, and Charlotte told me about the conversation, I couldn’t help but grin–the kids basically said, Hey, Charlotte, we each have something going on. Your heart is different, it’s a bit scary, sure. But we aren’t going to think any differently of you. (Which was one of her chief concerns)

A couple of moms reached out to me after the presentation to say that their children were really interested, concerned for Charlotte, and learned a lot. One mom said that her son rarely tells her anything about school, but couldn’t stop talking about “Charlotte’s nurse.”

The students learned so much and their own hearts were so incredibly compassionate (another natural trait for fourth graders). Two of the girls conspired to throw Charlotte a surprise party the Friday before her surgery. The love they shared (and the gifts and sweets) really buoyed Charlotte’s spirits during the final countdown and have her super-excited to go back to school. And did I tell you that the class Skyped with Charlotte yesterday? Again, they had a lot of great questions, beyond “how do you feel?” and they blew lots of kisses.

IMG_0714Thank you, Alexandra, for fostering such an atmosphere of intellectual curiosity and camaraderie in your classroom. Thank you, Elizabeth, for going to school and answering a lot of questions. And, thanks to all of Charlotte’s friends for making her feel so very special.

Post-Surgery Appointment (#CHDAware), or One More Step Back Toward Regular

It’s hard to believe that Charlotte has been home for nearly a week and that her surgery was two weeks ago. As long as the hospital stay felt at the time, it has faded into memory in some ways. (Though it was odd to go back to the 15th floor for a Children’s Service Board meeting last week, two days after she was released.)

We returned to Lurie Children’s on Tuesday for Charlotte’s post-surgical visit with the Advance Practice Nurse (APN), the most excellent Holly Adams (with a guest visit by Lindsay Jackson).

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In addition to removing her own bandages, Charlotte listened to her own heart. She says it sounds different than it did. The thump-swoosh rhythm seems stronger and faster. (Mom forgot her camera and the phone didn’t so well with hospital lighting.)

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I’m pleased to say that there is nothing of importance to report!  Charlotte is only on one prescription medication, Lasix. That dose was reduced by 50%, to be continued until we see Dr. Young in March. She continues to take Miralax and baby aspirin, the latter until we see Dr. Young and the former until at least our visit with the pediatrician next week.

Charlotte had already removed all the tegaderm bandages (on the arterial line, one failed PIV poke, and–yuckiest of all for her–the chest tube wounds). All that remained were the surgistrips over the wound.

Holly and I watched as Charlotte took the bandages off herself, slowly and deliberately and with strong intention. Unlike 2007, I did not take a photo of this scar for public sharing. It looks a lot better than it did at her first post-op visit in 2007.

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First post op visit March 2007. Skin still irritated from tegaderm around IV points and scar is dark pink. In February 2015, tegaderm irritation is all gone and scar is already light pink

 

Bottom line: Charlotte has been released from cardio-vascular surgical care. Her next hospital visit will be with Dr. Young. Her next post-op visit will be with her pediatrician.

She has been cleared to return to school on Monday with the recommendation that she do half days until we understand how tired she gets. (We’ve been hoping to build her stamina with walks, but the weather has not been cooperating.)

A Day In the Life of Cardiac Surgery Recovery

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Why homeschooling at our house will never be a long term commitment.

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Qwirkle

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Mom’s Remedy

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More Quirkle

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More trash talking, I mean, more Qwirkle.

In all seriousness, Charlotte has been handling her confinement with aplomb. She’s been trying to get her schoolwork done without too much complaining, playing board games, reading, and practicing the piano a lot (it’s good for her post-surgery posture recovery!). And pretty much every night at 7:36 she says, “I need to go to bed. Now.” Then she sleeps for about 12 hours.

We finally went for a walk around the block yesterday–had to wait until the below-zero temperatures subsided. She also had a visit from a school friend yesterday. Today, another school friend visit plus a haircut (with a one block walk to/from the car) led to Charlotte abandoning a game of Qwirkle midway through for a nap. Charlotte never naps. It’s kind of against all of her principles (silly girl). But today, she passed out for about two hours, waking up only because Phil tempted her with wonton soup and we let her watch some of the Oscars (well, we let her sit in front of the t.v. and play video games on her iPod).

She’s running a  low-grade fever today–the first we’ve noticed. It’s only 99.1F so, we’re not too worried, but we’ll keep an eye on it.

She’s gotten all of her bandages off, except the surgistrips on the big incision, which the APN will take off on Tuesday.