5 Things I Wish I Knew Before My Daughter Had Open-Heart Surgery


Two years ago, we woke up like any other day at 5 am, but this day wasn’t like any other early morning.

Three days prior, we’d been told that without heart surgery Eden wouldn’t see out the week. She was 10 weeks old.

We arrived at the hospital at 6 am. I had my tissues with me since I knew I’d need them. Eden passed all of her checks, and I filled out the paper work, which included a waiver of responsibility if she were to die on the operating table.

We waited in the wings cuddling our girl until the nurse came to collect her. I hadn’t cried any tears yet. Would the handover would be my undoing? I kissed her and handed her over. We watched as she was carried beyond the doors. I didn’t cry, but instead felt a sense of relief that her condition was no longer my responsibility.

Eden had two large holes in her heart, and open-heart surgery was her only chance to live. Her surgery was supposed to take anywhere from 3 to 5 hours, so instead of sitting around watching the clock, we left the hospital and went out for breakfast. (I know, I was as surprised as you are.) After breakfast we shopped, we laughed and we joked. It was like we were on a holiday. While we were at the shop, I turned to my husband and said, “Is this wrong? It doesn’t feel wrong, but shouldn’t we be worrying or praying or something?”

Suddenly, Philippians 4:7 came to mind. I’d known that scripture for years, but it wasn’t until this day did I truly understand it. I believe “the peace of God” was guarding my heart and mind, which is why I didn’t cry. I knew at this point all would be OK.

About five hours after we left Eden, we received a call from her surgeon letting us know her procedure had gone well. We made our way back to hospital.

When we saw her in her room, there were millions of wires and lines (no exaggeration) keeping her tiny body alive. Sure she was in ICU, but she had made it and I couldn’t get that grin off my face. Over the next two days, she would reach some major goals in record time. I was already counting the moments to bust her out of there.

But the next three weeks would prove to be some of the most challenging weeks of my life. Here are a few things I wish I’d known:

1. Don’t just prepare for surgery, prepare for recovery.

We were prepped for a 5 to 10 day stay, but not everything went according to plan. My zealous “home by the weekend” attitude was shattered with a three-week stay. From the practical side of things to the emotional side, I needed more clothes, more books to read, more visitors and more prayers. I say overprepare!

2. Not everything will go to plan, but the end result can still be the same.

After the initial ICU stay, Eden’s recovery slowed. A residual leak was discovered, and a cardiac catheter and blood transfusion were also required. She still recovered, but it took longer, involved a lot more drama and sucked the life out of me. Expect the best but know the realities.

3. Get out of the hospital.

Three weeks in the hospital felt more like six months. Any chance you get to leave and have lunch or dinner with a friend is is a definite must. Our hospital also had volunteers who would sit with your child while you’re out showering, grabbing a coffee or making a call. After Eden was stable and on the mend (be it ever so slowly), our hospital let us take her out for a walk to soak up the winter sun.

4. Don’t underestimate your own knowledge.

You’re the one sitting at your child’s bedside for 90 percent of the day. Your expertise is valid, and you must speak up to nurses and doctors about what you know. From nurses’ shift changes to doctors’ rounds, be present, stand up and be a part of what’s happening. I made sure I was present when the doctor stopped by. I was always alert and ready about the day’s plans. Don’t hang back, be part of the process.

5. Be prepared to step in.

You are your child’s advocate, and no one has their interests at heart more than you. I had to step in more than once when I didn’t agree with how a health provider was caring for my child. Here’s a tip: Nurses will tell you what your rights are when you don’t agree with some hospital procedures for your child. You just have to ask.

Two years on, our girl is fighting fit and tackling life head on. The hospital stay feels like an eternity ago now, but pieces of it are etched in my memory forever.

Ruth Usher the mighty

A version of this post originally appeared on Perfect by Design x2.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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