My CHD book has been published!

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I wrote a book titled Raising a Heart Child: A Parent’s Guide to Congenital Heart Defects. It is based on Corey’s journey through the world of CHD. It is available in ebook format on Amazon, Barnes & Noble, Apple, FlipKart, and Smashwords, and it will soon be sold on Oyster, Kobo, Blio, and PageFoundry. Here is the introduction:

“There’s something wrong with your baby’s heart.” Those seven simple words changed our lives forever.

We began our journey in the world of congenital heart defects (CHD) when I was twenty weeks pregnant with our first son, Corey. During the standard twenty-week ultrasound, the technician found that one side of our son’s heart was abnormally large.

And so it began. A series of high level ultrasounds, test after test, consultation after consultation with specialist after specialist, all through an endless stream of tears and fear and sadness. A perinatologist who gave us no hope. A pediatric cardiologist, and then another and another, who gave us the ray of light that we needed to hang on.

In medical terms, tricuspid atresia. A single ventricle heart defect, a hypoplastic right heart syndrome. In human terms, a life lived with half a heart. But a life worth living, in every way, if we could accept the challenge and fight for our baby. And so we did.

Corey had his first surgery before he was a month old – the Blalock-Taussig Shunt. The second surgery came at less than six months of age – the Glenn. And finally, the three-stage reconstruction was completed with the Fontan when he was just four years old.

Today Corey has completed third grade. He’s the teacher’s pet. He’s an A student. He plays baseball. Everyone loves this beautiful child who fought his way into the world and then fought his way into all of our hearts.

I don’t know what the future will bring. Tomorrow is a promise to no one. But I do know that every single moment I have had with this amazing little person has been a gift. The present is bright, and I have every reason to hope that the future will be too.

I am not a doctor, and this story is not meant to offer medical advice. Only medical professionals can provide medical advice. But I have lived this story, and these pages offer a firsthand glimpse into the life of a child with CHD, including everything that I have learned along the way. This is the book I wanted when we discovered Corey’s defect. It is a road map of our journey through the world of CHD.

This is Corey’s story. Through it perhaps you can find hope for the child in your life who battles congenital heart defects too. And maybe some small comfort in knowing that you are not alone.

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The Fontan – the final surgery in the reconstructive pathway.

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This is (hopefully) the last graphic picture I have to post, because (hopefully) the Fontan was Corey’s final surgery. Every year, on April 21, we celebrate Corey’s Fontanniversary. The anniversary of the day he had his Fontan surgery, April 21, 2009. The last surgery in the three-stage reconstructive pathway. We waited for the Fontan for years. All the time that we waited, I felt a fog of fear drifting over me. I tried to push it away and live my life with Corey, enjoying the time we had together, but it was always there.

Handing Corey over for surgery was extremely difficult every time. With the B-T shunt and the Glenn, he was a baby. That was awful – he was so small and helpless. But the Fontan brought a new set of challenges, because by then Corey was a four-year-old child. He walked, he talked, he asked questions, and he felt fear. We had to figure out how to get him through without scaring him. We had to feel our fear and hide it from him. It was a whole new ballgame.

April 21st came, and Corey had his Fontan. We hoped it would be a textbook event, as the previous surgeries had essentially been. It wasn’t. In the wee hours of the morning on April 22, the PICU staff discovered that Corey was bleeding internally. He had to go back to the OR. It’s one of the few times I’ve seen my husband truly terrified. Up to that point, Corey was on the path. But at that moment, he was off the path. Back to the OR he went for emergency surgery. And thankfully, he came through.

On April 28, 2009, the fog of fear that was with me for so many years finally lifted, and we brought Corey home. He was pink. So pink! His oxygen saturation levels were at a record high in the upper 90s. His energy level went through the roof! And there it has remained to this day. We did it!

Let’s have a wedding and major surgery in the same week!

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I’m trying to power through the recreation of Corey’s CHD timeline. Let me start by apologizing for hitting you with another graphic photo of Corey post-op. You’re not experiencing deja vous. I posted a photo of Corey after the B-T shunt yesterday. This is a photo of Corey after the Glenn.

And with that, let’s get to it. On July 13, 2005, at around five months of age, Corey had his Glenn surgery. My brother – my only sibling – got married that same week on July 16, 2005. And thus I win the “worst timing” contest. Our pediatric cardiologist literally hid behind the giant hippo bed in the exam room when he delivered the news. I wish I had a picture of that.

Corey had his Glenn as scheduled, and my brother had his wedding as scheduled. Did I mention that the wedding was on the west coast while Corey’s surgery was on the east coast? Yeah. Good times. I flew across the country the morning of the wedding, slapped on my bridesmaid’s dress, attended the wedding and the reception, slept like the dead for five straight hours, got up, flew home, and went right to the hospital the next day.

Leaving Corey in the hospital was one of the toughest things I’ve ever done. But he was stable and surrounded by people who love him when I left, and he was stable and surrounded by people who love him when I got back. And on July 18, 2005 they sprung him from the hospital. My baby rocked his second surgery, and he came home stable for the first time.

Life was much better after Corey recovered from the Glenn.

How do you hand your child over for surgery?

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There’s only one answer to that question: you do it because you must. Nobody wants to kiss their child’s head and watch them fall under sedation. Nobody wants to leave the OR wondering whether they’ll ever see their child alive again. I’ve done it four times with Corey. I hope I never have to do it again.

Corey had the B-T shunt surgery as an emergency on March 9, 2005. He was barely two weeks old. Just a little tiny baby. And he seemed fine. But the home pulse oximeter told a different tale. Corey’s oxygen saturation levels were in the toilet. We checked him in through the ER at Johns Hopkins, and he had his first surgery.

We were a terrified sobbing disastrous mess before the surgery. I bit all my fingernails off during the surgery. And then Corey showed us what a little spitfire he is. He fought his way through the surgery with no complications. Corey came home on March 15, 2005 after a short textbook recovery. He was one tiny being with so much strength and personality. He still is.

Five Little Boys (Plus Top 10 List III)

This weekend we went to visit my college roommate (Sonja) and her family. She has three little boys, all under the age of seven. We have two little boys. In this scenario, 3+2 = Crazyville. To be fair, the boys were all really good. It’s just that each child individually possesses a massive amount of energy coupled with the brains to cause all sorts of wicked trouble. Put all five of them together and the destructive power rivals the Tasmanian Devil’s. They’re all wicked cute, though. And they know it. And thus we do not sell them on eBay, but instead we laugh and quote their zaniness.

Here’s the latest top 10 list, courtesy of Sonja. These are all things she’s actually said. Except one – I made one up. See if you can figure out which one.

Top 10 Things a Mommy Never Thought She’d Have to Say

10. “Get the shark out of the refrigerator!”

9. “How did poo get on the wall?!”

8. “Hold still – I have to cut the helicopter out of your hair.”

7. “Stop rubbing the carrot on your foot!”

6. “Please EAT your piece of chocolate. It is not a crayon.”

5. “No, I’m not going to help you put the sunglasses up your pants.”

4. “No, guys, don’t pee on that bush, pee on the other one!”

3. “Don’t forget to take the pizza out of your pocket before bath time.”

2. “The peanut butter goes in your mouth, not in your brother’s eyebrow.”

1. “Don’t pick pieces of chocolate off the baby’s face and then EAT them!”

The next post will be about Corey’s B-T shunt surgery. Until then….