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Eight Years Post-Open Heart Surgery: Our Story

FAMILY

May 24, 2021

Trigger warning: as noted in the title, this blog post is about my daughter’s open heart surgery and the roller coaster of emotions that comes when your child is critically ill. Please do not read beyond this point if it could potentially upset you or trigger your own experiences in a negative way.

When my oldest daughter was 18 months, her new pediatrician heard what he thought was a slight heart murmur. Combined with the lack of weight she had gained in the previous three months, he thought it would be a good idea to refer her to C.S. Mott Children’s Hospital in Ann Arbor, about 20 minutes from us, to get checked out.

I’ll never forget that day. My husband and I both had an hour commute and on the way to the appointment, we ran into more traffic. Because so many people had told us, “Oh, I had a heart murmur when I was little and it went away” or, “My child had one too, but grew out of it,” we weren’t as stressed about it as we normally would have been–we were stressed just trying to get there in time.

Anyway, at that point in her life, she had already survived a bout with pertussis and had been in the hospital, having had full checks and even an x-ray of her lungs. My thought was, if she had something, the doctors surely would have caught it by then, right? But, then again, it took me bringing her to three different pediatricians and the emergency room before she was finally diagnosed with whooping cough, so it was certainly possible someone could have missed something…

Delay After Delay

When we finally got to Ann Arbor, traffic by the hospital was horrendous and it took us 30 minutes to find a parking spot in the garage. We rushed to get into the elevator, only to get stuck in it! I mean, what are the chances? So, by this time, we certainly weren’t thinking about what might happen at the appointment; we were about to lose it in the elevator just trying to get there.

Thankfully, someone came to fix the elevator 10 minutes later and we ran to the Congenital Heart Center at Mott.

Still out of breath and flustered from being stuck in the elevator, we watched as our sweet girl endured test after test for hours. And, anyone with a baby or toddler knows that if they miss naptime, it’s going to be a disaster (it was).

Finally, after about three hours, we were ushered into a private waiting room where we sat for what seemed to be an eternity, trying to comfort an overly tired toddler. We were hoping the doctor would hurry up with the test results so we wouldn’t be caught in rush hour traffic on our way home. We debated take-out options for dinner that night.

And then a cardiologist with a nurse holding a box of tissues walked in.

“I’m sorry”

The doctor was blunt and to the point, which, as a PR practitioner, I can appreciate. He said, “I’ve got good news and bad news. The good news is, we can fix it. The bad news is, she has several holes in her heart.”

I honestly don’t remember much after that point. I think I was transported to another world.

We were silent all the way home. My husband and I deal with stress in different ways: he likes to analyze the situation and make sense of things; I like to stay busy to keep my mind off of what’s going on. The only thing we knew was that sometime in the next six to eight weeks, our baby–our world–would need open heart surgery.

Heal-A-Boo-Boo Project

To keep my mind off of things as much as possible leading up to May 24, 2013, I started making my girl hospital shirts that opened in the front so that, post-surgery, the medical team would be able to get to her incision without waking her up. I knew how scratchy and thin regular hospital gowns were, so I chose the softest cotton, used some cute diaper snaps, attached fun ribbon to the front and, viola, a new hospital shirt just for her.

She helped me in our craft room by picking out ribbon and matching hair bows, and I couldn’t help but think positively about her recovery: “She will wear this when she’s eating ice cream after her surgery.” “She’ll wear this one during her post-surgery check-up.”

It may sound trivial or superficial to some people, but to me, this was how I wanted to picture her: just a little girl, wearing a normal t-shirt who happened to have a special heart. And, when she DID recover from surgery wearing her matching shirts, bows and even legwarmers, other moms and the nurses on her floor went crazy over them, asking where I got them. The Heal-A-Boo-Boo Project was born.

The day after open heart surgery

The day after open heart surgery, she sat up, ready to eat ice cream! Pictured in her Heal-A-Boo-Boo shirt I made for her.

Side note: you can check out a couple of my Heal-A-Boo-Boo interviews here and here.

Find Your Way to Cope

I know I glazed over the actual surgery, but the details are still painful. A summary is easier:

  • It was awful to have to go through.
  • We had a phenomenal support team with us the day of the surgery.
  • It took several hours and included a point where she was put on an ECHO machine, keeping her alive during surgery.
  • Due to a family history of malignant hyperthermia and a family member’s fatal reaction, she is believed to be the first pediatric heart patient to ever be treated with an alternative form of anesthesia through her neck.
  • She had to have a second procedure to remove fluid from her lungs.
  • Because her ribs were broken to get to her heart, we couldn’t lift her up under her arms for months; we had to scoop her up.
  • She went home after only FIVE DAYS!
  • My mom moved over from Canada to the U.S. temporarily to help us care for her post-surgery.

Really, the nitty-gritty details aren’t important in this case. What I want you to walk away with, however, is that no matter what you are going through, try different things and find your own way to cope. Some well-meaning people will tell you what you should do or how you should act…but you know yourself.

My husband, for instance, is a detail guy. He actually watched open heart surgeries online so he could better understand EVERYTHING they were going to do during our daughter’s surgery. I, on the other hand, didn’t want to know…I just wanted them to tell me the success rates and potential challenges.

I also found that I needed to work to keep my mind off of everything going on (oh, and of course, to continue getting health insurance!). I only told my boss at work–I couldn’t even entertain the idea of explaining the situation over and over again to well-meaning colleagues.

For you, your method of coping through difficult life scenarios might be different and that’s okay. Therapy, time with good friends and family, talking it out, journaling, blogging, exercising, meditating, etc., etc. are all activities I’ve done over the years to help work through any post-surgery anxiety that creeps up (which, even eight years later, still does). You do what’s best for you, but also know that you may need outside help…and that is definitely something you shouldn’t be ashamed about.

Eight Years Later

Today, exactly eight years later, my “baby” is the most amazing 9.5-year-old around (yes, I had to get that .5 in)! Am I biased? Sure. But, she’s smart, kind, empathetic, talented and so much fun to be around. She understands what she went through as a toddler and even though she doesn’t remember anything, she has the physical scars to prove it–and she’s proud of them. She knows that we believe she can do anything because she beat the odds already–a couple of times–so why would something stand in her way in the future? She may be small, but she’s a mighty force. She’s passionate about drumming in a rock band, Girl Scouts, animals, meditating, saving the environment, helping others and starting her own businesses.

Our #hearthero (and accomplished rock drummer).

And what did I learn from this experience? Well, first, that you can’t control everything, no matter how much of an amazing planner you are. Second, although I love my work, my priority is my family, so I’ve been building my career and agency around them, only taking on clients and projects that REALLY light me up. Finally, if something doesn’t work out, it’s okay…because you know what? Eight years ago today, I could have lost my sweet daughter, but didn’t…and to me, nothing has been as serious as that time in our lives, so why worry about the smaller things?

These two pictures were taken exactly eight years apart, to the day. What a #heartwarrior!

These two pictures were taken exactly eight years apart, to the day. What a #heartwarrior!

Final Words

It was a surreal experience to become a #heartmom. I joined a lot of support groups and got to know so many incredible parents and kids who went through the same thing we did, but often worse. My husband and I both struggled with a lot of guilt after the fact because some kids had it much worse than our daughter did. Other kids had to have multiple surgeries and a few parents were never able to take their babies home.

I just want to take a moment to express my deep gratitude for Dr. Ohye and the amazing team at C.S. Mott Children’s Hospital, as well as our pediatrician, Dr. Dan, who was the one who discovered our daughter’s heart murmur.

While we were in the hospital, post-surgery, an incredible job opportunity came up at the University of Michigan, where Mott is located. The job was for a communications and marketing manager, responsible for promoting corporate research and funding opportunities throughout the university. Essentially, I would be able to use my skills to help bring in more funding for additional research to support the great work being done by scientists and doctors at U-M…including the studies my daughter was involved in.

Although I wasn’t looking for a new job, I applied and landed it. I spent many incredible years at U-M, doing impactful work with an awesome and dedicated team. I even got to write about our family to help promote a cool new activity at the hospital!

So, as you think about your talents in communications, please consider how you can use them to forward a cause or organization you are really passionate about. When you’re pitching or writing about something you really care about, your passion shines through and it makes it easier to relate to your target audience.

And, if you’ve done this–shifted your work to a passion–I’d love to hear about it. Please leave a comment below and let me know how you did it and what you do!

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