Hannah’s 1 Year Post-Op Cardiology Appointment

Last week my BFF Tori and I left our kids with their fathers and grandparents and headed to Vermont for a few days of yoga, music, relaxation, and fun. We had such a good time that we were already mentally planning next year’s trip. I even took an extra day off from work and went to the beach with Hannah, Grandma, and Pete’s brother. I woke up high on life and completely refreshed Tuesday morning. I was actually looking forward to Hannah’s cardiology appointment because her last one in November resulted in a clean bill of health.

I let my guard down and the Universe came in swinging and knocked me on me knees. Life has a funny way of being a total bitch like that.

Hannah has scar tissue, called a subaortic membrane, that has grown significantly since her last appointment. Her cardiologist failed to mention its existence in November so it came as quite a shock. The scar tissue causes two issues: the heart has to work harder to pump the blood out to the body, and the high-pressure jet of blood can also damage the aortic valve. Look for the black arrow in the picture below for a visual.

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The solution? Open heart surgery within the next six to twelve months.

The first step; however, is a sedated echocardiogram to get a better idea of the actual size of the membrane. We have to wait until the end of July for that because the hospital only performs them twice a month. Until then we’ll wait, and pray, and continue to have a badass summer with our little love.

 

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A Belated Heart Day Post

I thought I could do it. I really tried. For months I sat in front of the computer and tried to write an uplifting account of Hannah’s surgery and recovery. The problem is that my mind always raced through the days, my stomach tied itself in a knot, and my fingers refused to move. All I could feel was the fear, the anxiety, the overwhelming relief. Most days, the experience of Hannah’s surgery hurts more now than it did a year ago.

In the hospital we lived minutes and hours at a time. We distracted ourselves with a big breakfast, magazines, and naps during the surgery. The first days of recovery we kept busy talking to the nurses, doctors, and therapists, then texting and emailing friends and family with quick updates. There was no time to think about what could happen.

I wish I had the foresight to write down a summary of each day’s events. My memories of those days are a mess – blood draws, beeping machines, a collapsing lung, the panic on the nurse’s face as Hannah woke up from sedation, and the matching terror on Hannah’s face. Maybe if I could look back on those notes I could remind myself that everything Hannah experienced was “normal,” instead of letting the “what if ___ happened” consume my thoughts.

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Sunday June 12th was the first anniversary of Hannah’s surgery. It was supposed to be a joyous day with a celebratory dinner at Grandma & Grandpa’s house (complete with a new stuffed animal and balloons). The reality is that Hannah was on day two of a 104* fever, completely comatose when the Advil wore off but a total animal after a fresh dose. We couldn’t tell what was wrong and our little warrior tried to play it off like no big deal.

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Then at 3 am Monday morning we witnessed the one thing we were so deathly afraid of prior to surgery. Hannah was inconsolably crying in my lap and when Pete turned on the light we saw our sweet baby girl with blue lips and so pale that she looked purple. The pediatrician’s old warning “If her lips are blue take her to the hospital” rang through my head.

Thankfully the ER wasn’t busy when we arrived so we were taken to a room almost immediately. Hannah had a urine test via catheter, a lung X-ray, and two blood draws by heel stick. She barely cried and looked like she just wanted to sleep through it all. Occasionally she’d give a quick half smile under the pacifier to let us know she was alright. A few hours later we left the hospital with a shot of antibiotics, half a diagnosis, and a suggestion to see our own pediatrician. Another couple of hours later we finally had the official diagnosis of pneumonia.

Banana recovered very quickly once she was on antibiotics and was almost back to normal the following day. We finally found a medicine (amoxicillin) that Hannah loves so much that she whines when it’s gone!