Flashback #3: The Surgeon Smiles, The Parents Breath (#CHDAware)

I’m sipping tea at the dining room table. Charlotte is upstairs–first day of winter break–doing who knows what. I look at the clock: 9:17 a.m., exactly the time a year ago today Dr. Backer made the first incision in Charlotte’s third open heart surgery. It’s been 365 days. Charlotte hasn’t given it a second thought. Her scars will be neatly hidden beneath warm clothes today, and she’s mostly focused on whether she can convince me to go to a toy store. But, I’m sure I won’t stop thinking about it all day. About how lucky we’ve been in her outcomes so far.

 

I thought I’d share our final update from the surgical waiting room because it begins with the most unlikely of images, a smiling surgeon.

February 11, 2015, Update #4: Dr. Backer stopped by about 30 minutes ago, coffee in hand, imprint from surgical cap still on his forehead, and grin on his face.

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Bubba sits on the gurney outside the surgical suite, keeping guard.

 

Bottom line: Charlotte is out of surgery and he is happy with the results. As he was talking, the surgical team was getting ready to bring Charlotte up to the CCU. We should be able to see her in an hour.

If you don’t need details, you can stop reading there!  If you want more, read on:

The doctor replaced her 16mm Dacron conduit and valve with a 22mm conduit and valve. That means that she has a valve the approximate size of mine. He said that the new valve (her last one was placed in 2007) are made better than the old ones. And it is big enough that there is a good chance that a valve replacement, if needed, might be done via catheter procedure. No one can say for sure that this is her last open heart surgery, but this one went as well as can be expected.

p.s. The new valve is still a “piggy valve,” so kiddo will still be able to snort when she laughs.

Sources:

Children’s Heart Foundation Fact Sheet

American Academy of Pediatrics Congenital Heart Public Health Consortium

 

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

 

 

The Unstressed Stress Test

Charlotte went for her post-surgery exercise stress test yesterday. If you recall, she had a baseline test in January. For the details of the visit itself, check out that blog post–I was pretty specific about the machines, the hook-ups, etc. and how it all worked.

In January she was only able to move (a slow, steep walk into a steeper run) for about 7 minutes. She had to stop because she began to have pain in her chest, or in her heart as she put it.  Her lung capacity was 71%, lower than the average 80% for kids her age.

Yesterday she continued on to 10 minutes. She only stopped because the tube she had to breathe into was terribly uncomfortable–she was drooling around it, but her mouth was dry–and the knee she skinned on a carpet was really bugging her.

Happy Half-Birthday to Charlotte!!! (11/9/2015)

Happy Half-Birthday to Charlotte!!! (11/9/2015)

Unlike the test in January, the cardiologist in the room did not give us the full detail of lung function, etc. He just said that everything looked good and that he wasn’t worried about anything. We’ll expect a more full report from Dr. Young when she has a chance to read the EKG and other data.

We weren’t terribly surprised by what we did hear, though we loved hearing it. Charlotte is training for the Girls on the Run 5K which she and I will run on November 21. She regularly is asked to run for as long as she can in gym and usually gets to at least 12 minutes. She tells me that is longer than some of her other classmates.

She was thrilled to go to school for a half day on her half birthday! I was thrilled that all is as it should be: Her heart surgery in February is a memory, the scar is fading to white (finally), and our daughter is again thriving and keeping up with her friends.  A good day.

Please Help Me Make History for Lurie Children’s and Charlotte

In just over two weeks, I’ll walk on stage with my irreplaceable co-chair Tommy Horowitz Sheridan​ to welcome an audience of 1,015 to the 60th Annual Gold Coast Fashion Award Show. As a grateful parent, I couldn’t be more honored to have had the chance to pull together our first evening event. It is going to be a glamorous evening of celebration (yes, that means open bar) that you won’t want to miss—come as a couple or gather a group of friends. We are well on our way to breaking all of our previous fundraising records, and to a sellout event.

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As you’ve heard me say, probably ad nauseum, Ann & Robert H. Lurie Children’s Hospital of Chicago​serves all of our children, from all legislative districts in Illinois, all 50 states and 48 countries. And if you don’t have kids, you know the hospital serves your neighbors, nieces/ nephews, students….all the kids you love.

Please join me in making history for Lurie Children’s—buy a ticket at http://www.gcfas.com and we can toast our efforts together. Can’t attend? Go to http://www.gcfas.com and buy a raffle ticket or make a donation!

There are fewer than 215 tickets left and they are going fast. Get yours now!

Thanks for all of your support over the past two years. I couldn’t have done any of it without you!

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

Continue reading

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.)