Tag Archives: CHD

An Interview with the Heart Child

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We all know what I think about about the heart child and his miraculous journey. But what does HE think? I got the idea from wordpress, (http://dailypost.wordpress.com/2013/11/16/daily-prompt-details/) and I interviewed Corey to find out. I did this while he was trapped in the bath tub with his brother. He couldn’t just run away from me with bubbles plastered over every inch of his body. Here is what the 8-year-old with tricuspid atresia had to say:

Q – Corey can I interview you?

A – Yes.

 

Q – What’s it like to be a heart child?

A – Fun ’cause you get all the attention.

 

Q – What’s the best thing about being a heart child?

A – You get to have a cool big scar.

 

Q – What’s the worst thing about being a heart child?

A – You can’t go on roller coasters or anything with G forces.

 

Q – Does anybody think you’re weird because you’re a heart child?

A – No.

 

Q – Was having your big surgery scary?

A – No it wasn’t, because I got all the pizza I wanted any time I wanted it.

 

Q – Is there anything else you want to say about being a heart child?

A – Uh, no.

 

Q – Do you win all the “biggest scar” contests?

A – Yeah. That’s the best.

 

Q- What’s it like to have a brother with a regular heart?

A – Cool because he doesn’t get as much attention.

 

Q – Did you like being a Make-A-Wish child?

A – Yeah, because I got to fly over volcanoes in a helicopter. And I went with honeymooners. Also there were a lot of watersides.

 

Q – How do you like school?

A – It’s good. I get all As and all CDs and one B. And I play a musical instrument.  I play strings and I have a winter concert on December 10th if you want to come.

 

Q – Is there anything else you want to say?

A – Uh, I want Mr. Gold from Lego Figures!

Well doctor, am I going to live?

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Usually when we go to Hopkins for the day, it’s related to Corey’s CHD. But not yesterday. Yesterday was for me.

My own heart is weaker than normal. This is a result of viral myocarditis, which means that a virus attacked my heart and left me with scar tissue. The attack and resulting scar tissue weakened my left ventricle. And it didn’t just happen once. It happened twice. A cardiac MRI (otherwise known as 90 minutes in a dark tube spent holding my breath – panic attack anyone?) showed two spots of scar tissue in my heart. Two viral attacks. Lucky me!

After the first viral attack, which happened around the time of Corey’s birth, my ejection fraction (ef) was 45% at its lowest. A normal ef is between 55-70%, though many experts consider 50-55% to be borderline normal. 45% is abnormally low. So I asked my cardiologist what my long term prognosis looked like. He hedged. This led me to believe that I was on borrowed time. He also told me that more children were out of the question. That news hit me like a sledgehammer in the face, because I only had Corey, and he has a life-threatening condition. What if I was doomed to have only one child, a child with CHD? 

Because I am a firm believer in a second opinion, I went to Hopkins and got one. My Hopkins cardiologist, Dr. Schulman, disagreed with the other cardiologist and gave me the green light to have a second child. And thank God, I had my beautiful healthy-heart Mason.

But that wasn’t the end of the story. Another viral attack occurred, leaving my heart weaker, requiring me to take medication and dedicate myself to an exercise regimen that would strengthen my weak left ventricle. Which I have done, and happily my heart function has improved. Unhappily, however, Dr. Schulman advised me not to have the third child I wanted so badly. I was hoping for a little sister for Corey & Mason. But having a third baby would have meant leaving the babies I already have. I chose to stay with them. It was the right choice, but it still saddens me. Nobody should have that choice taken from them.

So where am I now, six years after the birth of my second child? Six years after the second viral attack? Has the medication and exercise worked? Am I still on borrowed time? How long with the boys have their mother? Will I live to meet my grandchildren? 

To try and get some answers to these questions, I spent almost all day at Hopkins yesterday. There’s been so much new construction recently that Hopkins has more towers than a medieval castle. So I got there at 7:20 AM, checked in at the wrong tower, hoofed it to the right tower, and then finally had everything in order and plunked my behind in the waiting room chair at 7:55. At 8, the nurse came to get me, and it took 90 minutes to get my echo done. That’s a long echo, but not too much of a surprise. My shortest ever echo was 45 minutes – I am hard to image. ??? I’ve heard this grumbled at me so many times by so many different techs that it must be true. I wish they’d give me a lollipop and let me watch “Shrek” like Corey does for his echos. 

I finally saw Dr. Sculman in the afternoon, and the news was good! Better than I hoped, actually. He showed me my heart. My ef has improved to nearly 50%! And there are no signs of hypertrophy (thickening of the heart wall). That’s the big concern with a weaker left ventricle. But all the exercise is keeping the muscle strong. Yay!

And that wasn’t the best news. The best news I got yesterday was that I will in fact live to see my grandchildren. Unless something else kills me, of course. But my heart is not going to give out. Dr. Schulman didn’t hedge on this point. He said with confidence that I look good and should continue to look good for decades to come. I love that guy.  

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)

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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….

Getting Published

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Let’s take a brief break from Corey’s CHD timeline to talk about getting my book published. I’m still reading the book on publishing, and I am nearly finished writing my proposal. The proposal will go out to some small publishers rather than an agent, and then I will start doing the “please like my book!” dance. Maybe I’ll take video of these dorky dance moves. In the meantime, here are the elements of the proposal: 

  • Table of contents

  • Overview

  • Bio

  • Audience

  • Competition

  • Special Marketing and Promotional Opportunities

  • Manuscript Specifications

  • Outline

  • Sample Chapters

Are you asleep yet? Me too. What I’m really struggling with is how to interject some levity into the proposal. Here, on the blog, it’s easy to be silly. I’m writing for people who get my idiocy. But here’s the rub – many authors approach a proposal like a term paper. They only concern themselves with the facts. Well, that’s not going to grab attention and sell a book. That’s going to get you into the slush pile.

So, in my proposal, how do I go from, “Well, my child has a life-threatening condition and here’s what it’s like to live with that!” to making anybody laugh? Am I just going to roll with a tone of deep seriousness? The book is written in first person. The proposal is therefore also written in the first person to allow my voice to come through. Fine, but only my dire voice is coming through, and that’s no good. Where is the space for a “top 10 list” in the proposal? Ack! 

Suggestions are welcome…..

Baby Comes Home!

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Continuing with my recreation of Corey’s CHD timeline……

On February 23, 2005 Corey had his very first procedure. He hadn’t even been on the planet as an independent being for one day when the first invasive intervention was necessary. A balloon atrial septostomy. In other words, the doctor widened one of the holes in Corey’s heart to allow blood to shunt more effectively. It happened right in the NICU with a crowd of doctors and medical students watching. We, his parents, were not there.

On February 27, 2005, we were discharged from the hospital, and Corey came home for the first time. I thought the doctor was joking when he said we could leave. It had taken an entire staff of doctors to keep Corey alive this long, who the hell were we to be able to keep him alive in our house with zero medical training for even five minutes? And we were rookie parents! At this point in my life I’d managed to keep a healthy cat alive for seven years, but all the goldfish and plants – dead. Dead as doornails. I was convinced we were in trouble. It was terrifying.

But we managed. Despite the fact that Corey came home in heart failure, on several medications, we managed. Corey also came home with a home pulse oximeter, and we used that sucker religiously. And it’s a good thing we did. Because one night his oxygen-saturation levels plummeted, and we found ourselves right back at Hopkins for the emergency B-T shunt surgery.

I’m thankful that we had a short time to bond with our baby at home, despite the fear. It was nice to hold him, touch his face, count his little fingers and toes, and love him without all the beeping medical equipment, bright lights and bustling staff of our hospital stay. The time was brief, but it was precious.

Birth…..and off to the NICU

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I’ve never heard a boring birth story. Have you? There’s nothing boring about bringing a new life into the world. Corey’s birth was no exception.

February 22, 2005. My water broke before 5 AM. I woke my husband up and said, “My water broke.” He yelled, “What?  What?” He’d been forced to wear earplugs for my entire third trimester to deal with my freight-train snoring. He pulled out the earplugs and I repeated myself. He was out of the house like a shot – it was a sitcom. He nearly forgot me.

The good thing about going into labor in the wee hours of the morning was the traffic. There wasn’t any. We arrived at Hopkins in no time flat. The next sixteen hours brought a parade of doctors, nurses, technicians, students, and every other Tom, Dick and Harry on-call that day into my room. Everybody wanted to see the birth of the heart child. I think the janitor even wandered in at one point. This is why I no longer have any shame.

Alas, despite the extensive number of cheerleaders on my team, labor didn’t work. Corey was sunny side up, refusing to budge, and his heart rate was dropping. An emergency Cesarean section followed. Corey broke into the world wailing like a banshee with all his will to live. The anesthesiologist said, “That’s the healthiest looking baby I’ve ever seen.” And he did look perfect. And pink. Would we have discovered his CHD in time had he not been diagnosed in utero? That’s a thought that haunts me.

I was only afforded a brief glimpse of my squalling baby before he was whisked off to the NICU. Then I had to wait until he was settled and the effects of the anesthesia wore off before they would let me visit him. I waited. And waited. I wanted to sleep desperately. My body was ravaged by the labor and then the emergency surgery. But I did not dare. I didn’t know if Corey would live to see his second day, and I could not risk losing him without ever having touched him, without telling him how much I loved him. And so I waited.

In the middle of the night, they finally came to get me. I couldn’t walk, so they wheeled me to the NICU. And then I finally had the chance to introduce myself to my son. To put my hand on his tiny chest and tell him that I was there and that I loved him. And then I slept.

Corey had his first procedure the next day.

Top 10 List (Part 2)

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Anyone who parents small children knows that the little people can get seriously creative. Sometimes this is a good thing. Sometimes this is a bad thing. These shenanigans cause us to say “Aw, look how cute junior is!” Other times we have to say completely insane things that no human would ever utter under any other circumstances. If you’ve got small children in your life, you know what I’m talking about. You’ve said it. Then you’ve said to yourself, “Did I really just say that?” Or you’ve said, “I can’t believe I just had to say that again!” Like, “Don’t put that in your mouth. It’s not food.” If I had a nickel for every time I’ve said that…..

So while this blog is dedicated to Corey’s CHD journey, it’s also about parenting. And I need a break from the heaviness. So rather than dragging us all through the dirt today, I’ve decided to take a lighthearted break and offer up this list of 10 things that I’ve actually said. Well, 9. There’s one in the list that I made up. Can you figure out which one it is? Feel free to chime in with your own…

By the way, this photo of my healthy-heart child, Mason, is a nice example of a creative “Aw, look how cute he is!” moment. The top 10 list, not so much.

Top 10 Things You Will Never Say to Another Human Being Unless You Have Small Children

10. The fork goes in your mouth, not the electrical outlet.

9. Why is there popcorn in my shoe?

8. No, the cat is not going to eat your broccoli.

7. I don’t know if The Grinch is coming to our house, but if you keep that up, I’m betting on ‘yes’.”

6. Why does this naked doll have only one leg?

5. I don’t know if your ice cream sandwich will fit in your shoe.

4. Your underwear does not go on your head.

3. Pee in the toilet. Not on your brother.

2. Yes ducks do like potato chips.

1. Don’t put your butt in the popcorn bowl.