Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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.

 

 

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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!


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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.


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Happy Hanukah!

The best part of Hanukah when you’re 3-years old? The presents. Tonight Charlotte got her very own guitar! I think she would have slept with it if we’d let her.

Or is it Chanukah? Or Hanukkah? Does it really matter?
A Hanukah Story to share with you:
Every month Charlotte’s teacher, Celine, works with a theme. This month the theme has been “the holidays” which has mostly meant Christmas. The children have made a lot of Christmas trees–Céline uses the “art” projects to teach basic math skills like matching and patterns, and to work on fine motor skills (like putting small items in glue to decorate). Since it is a French school, the teaching of the holidays is “secular.” That is, they learn about Santa and reindeer, but not about the religious meaning of the holiday. Still, I was getting a bit overwhelmed by talk of Christmas tree projects and by seeing nothing but said trees, ornaments, and the like hanging in the hallways.
So, Friday was the last day of school before break. Charlotte climbed into the car and immediately pulled out of her backpack a bag of Hanukah gelt!!! (The chocolate kind.) She proceeded to explain that her teachers had given everyone a bag of gelt and had talked about Hanukah in class. They played with a dreidel and everyone put a candle in a menorah.
I cannot begin to express how touched I was.
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This weekend Charlotte made a menorah. I sometimes feel that she gets cheated out of some Jewish holiday learning because she doesn’t go to Jewish pre-school. So, when I saw a homemade menorah at our temple Hanukah party, I got inspired. Charlotte did everything except hot-gluing the nuts and bolts. Check it out: