Tag Archives: tricuspid atresia

Happy Fontanniversary, Corey!

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Can’t find a chair? Just hop in the trunk.

This is Corey’s 6th Fontanniversary. We are 6 years post-op! And he’s 10 – how did that happen? It’s also my Grandma Anne’s 92nd birthday. My other grandmother, Fran, is about to reach her 93rd birthday next month. Damian’s Grandma Jeanne just hit 93. So basically I’m surrounded by a bunch of willful, stubborn people who just plan to keep right on living indefinitely. Corey came into the world that way – I guess he came by these traits honestly. I’m so glad he did.

How is the heart child doing 6 years after the Fontan? Kicking butt and taking names, that’s how. It’s baseball season, and he plays catcher on defense, a role he loves, because the catcher is involved in all the plays. And, just like everything else Corey does, he’s all-in or he’s not in at all. His speeds are “on” and “off” – nothing in between. This is absolutely inspiring and utterly exhausting.

In school, his grades are As and Bs. More As than Bs, and his Maryland State Assessment test scores for math were off the charts. He creamed everybody. In his school, in his county, even in his state. His dad’s got a master’s in math, though, and I used to tutor college algebra and calculus, so again – good genes. (See what I did there? I just tooted Damian’s horn, Corey’s horn, and my horn too. Toot toot!) Also, through school, he plays the violin, and he loves it. And he’s good at it.

There is no Rubik’s cube that Corey can’t solve!

Yes that statement requires its own paragraph. Let’s see, what else? Oh! We are teaching him to play poker – Texas Hold’em. The Easter Bunny picked him up a set of cards and chips – given his proclivity for math and his luck at cards (his Uncle Dave used to be a professional poker player, so clearly this is genetics again!), we think he could have a smashing good time at this. We plan to get some lessons from his uncle when we visit him in California this year.

Anyway, in summary, the kid has exceeded all our expectations. We hoped he’d be somewhere on the spectrum of normal and quasi-intelligent, but he’s turned out to be a brilliant little being. He’s my miracle. Today and always.

The Heart Child is 10!

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And he turned 10 a month ago! And I have not written a single word since January! Which is very sad. Especially considering what a momentous occasion it was to celebrate an entire decade of Corey’s life. The child who has half a heart, who the perinatologist said would not reach his first birthday, has now blasted past 10 birthdays with his hair on fire. That child has more energy than an atomic bomb. He wakes up in the morning, his brain is instantly buzzing, and he is in action from that moment until the moment when his head hits the pillow at night. He gets As and Bs in school, he plays the violin, he is a reporter for his school newspaper, and he plays baseball. And he loves building Legos (like the Leaning Tower of Piza, above), solving Rubik’s cubes, and learning magic tricks.

He is a little miracle.

So why haven’t I written about this little miracle in so long? I blame the two-year-olds. You’re thinking, “Uh, what?” I’m teaching preschool. There are 30 two-year-olds in my life now. And they are wonderful, adorable, laugh-out-loud funny little beings who suck my energy out like a Hoover on steroids. I do love them, though. They just don’t leave much left in my tank for things like blogging.

Anyway, we did celebrate Corey’s big day like he was a rock star. We didn’t have one party. We had two parties. One was an evening event for adults and family members, and the other was an afternoon event at Corey’s favorite arcade – Crabtowne. The first event went off without a hitch. The second event, not so much. It snowed, which turns everybody here in Maryland into giant snow weenies (present company included), and nobody wants to drive anywhere. But! Of the four boys Corey invited to play pinball and old-fashioned Pac-Man, three of them braved the snow, accepted a roll of quarters from us, and played their hearts out for about two hours. In the end, Corey was happy. Other than that, who cares?

Corey is my miracle. And to CHD I would like to say, IN YOUR FACE!

The Worst Day of My Life

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What was the worst day of your life? Everybody has one. Mine was 10 years ago today: October 15, 2004. I was in the first year of my marriage, practically a newlywed, pregnant with my first child. A boy. A baby boy I’d dreamed of having for years.

And then I had the 20-week ultrasound. “There’s something wrong with your baby’s heart.” More tests. “It’s a heart defect, and it’s a bad one.” The doctor who delivered the blow advised me to terminate. He led me to believe that my baby had no chance. Nobody has every said anything more horrifying to me. Ever. Not before. Not since.

Every year on this date I think about that time. And I’m thankful that it was the worst day. Because once that day passed, I found hope. And my baby did not die. That’s him in the picture above, squashed underneath his younger brother and being photobombed by our family cat.

So yeah, October 15,2004 sucked. But today didn’t, and I really hope that date lives on as the worst day in my life forever. If it does, then I’m a lucky lady.

An Update on the Heart Child

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Friends and family know that the heart child, Corey, is nine years old now and doing remarkably well, but for new people surfing in to “meet” my little source of inspiration, I thought it might be time to write an update.

Corey’s in fourth grade, five years post-Fontan, and in the 62nd percentile for height, 50th for weight. He’s huge! He eats more food than I do at any one sitting. When he’s a teenager, I’ll have to hit Costco and buy six chickens at a time. And not to brag, but he’s wicked smart. Ridiculously smart. Okay, so I mean to brag. He’s so smart! Let me give you some examples of his cerebral prowess.

1. He watched videos on youtube and taught himself to solve the Rubik’s Cube. He can now solve any traditional 3×3 Rubik’s Cube in a matter of mere minutes.

2. When he took the state assessment test in his elementary school, his results in math were off the charts. He scored well above not only the kids in his school, but all the kids in the county AND the state.

3. His last report card was straight As.

4. He has an affinity for cards, picking up new games and winning at them so quickly that I am afraid to expose him to his Uncle Dave, who was once a professional poker player, because if Corey picks up poker like he picks up everything else, look out! We’ll be mortgaging the house to pay off his gambling debts before he’s 10. Or buying a vacation house in the Keys. Could go either way.

5. He beats me at Monopoly regularly, and I don’t let him win.

That’s enough about Corey’s brain. It’s a great relief, I must say, for his parents. When he was diagnosed with a single ventricle in utero, we wondered if he would be below average. Or well below average. Or worse. When our PC said, “If he is meant to be an above-average student, he will be, regardless of his heart,” he was right!

Corey also plays baseball. And well. Soccer is out – too much running – but he’s got rockin’ hand/eye coordination, and those brains of his come in handy. You need brains to play baseball. Luckily I don’t need brains to watch him play. I just need beer and peanuts. Just kidding. About the peanuts. These kids might have a nut allergy! I would never expose them to peanuts. Ahem.

Right now Corey (and his heart-healthy younger brother) is all excited for the holidays. We will be bringing out our Halloween decorations today! And I am feeling the boys’ excitement. The 10th anniversary of Corey’s diagnosis is this month, and when that day passes, and I mark it (as I always do), it will be with a giant smile on my face as I watch my amazing heart child play with our Halloween toys and talk non-stop about wearing his costume, trick-or-treating, marching in the holiday parade, going to Aunt Vicki’s for Thanksgiving, seeing Super Magic Elf (or Elf on the Shelf) again, what he’s going to write in his letter to Santa, when we’re going to get the Christmas tree, whether or not Mommy is going to forget the carrots for the reindeer again……..

Let’s Go to the Emergency Room!

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A few days ago, the boys (AKA, Team Crazy) decided that we don’t have enough insanity in our lives, and really we needed to make a trip to the emergency room. You see, the boys think “ER” stands for “Excitement Room.”

But let me back up a moment and explain. On Friday morning the weather was nice – a bit overcast and cool for an early August day in Maryland. A good day for an outdoor activity with Team Crazy. Anytime I can get them outside and run them, I do it. We opted to go to Down’s Park, which skirts the Magothy River and the Chesapeake Bay. Sounds lovely, right? And it is. As long as you stay out of the water.

My mother and I packed up the boys and drove off to the park. We arrived, parked near the playground, and the boys played on the equipment for a bit. Corey announced that he wanted to hike down to the beach area, and I, thinking nothing of it, readily agreed. The boys spent about 20-30 minutes playing along the water’s edge, building sandcastles, checking out seashells and bits of rock, and just generally wading about in the water. It was nice.

Until the park ranger approached us and said this, “I don’t mean to scare you, but we’ve had 16 cases of flesh-eating bacteria recently. Nobody should be in the water. If you’ve been in the water and you have open cuts, they’re advising you to go to the hospital.” Guess who had cuts all over his legs from scratching open mosquito bites? Both members of Team Crazy. Panic anyone? Flesh-eating bacteria?! Where were the warning signs?! I’ll tell you where: nowhere at that park or anywhere else I’ve been close to the water. Visions of the news stories showing people losing their limbs to this bacteria flashed through my mind.

So as I started to freak out and calculate my next move without terrifying the boys, the ranger proceeded to tell me that they have a hose attached to one of the nearby buildings, and that I should hose them off immediately. I practically broke into a run, leaving my mother and the boys behind in my fearful quest for that hose. When we all finally reached the hose, I had them strip down to their underwear (I briefly considered just having them streak naked back to the car, but I had no towels with me) and I hosed them down thoroughly. I then decided that, no matter what we did later, the first step was to wash them thoroughly with soap.

I drove home like Cruella Deville chasing down 99 puppies, and on the way I called their father. He suggested I call the pediatrician. I did. The nurse a the pediatrician’s office advised me to take them to the ER, noting that, should they be seen by the doctor, he would likely send us to the ER anyway, as they have more testing capability. We then called my mother-in-law for her opinion as a nurse (and scared the bejesus out of her – sorry, Conni), and she told us to go to the ER too.

Fine. We went home, showered the boys until their skin was nearly raw, covered all their cuts in Neosporin, threw fresh clothes on them (and me, as I was thoroughly soaked at that point), and went to the ER. At the ER, they looked at me like I was a crazy person. And that was without witnessing my bad driving! As in, “Here’s another lunatic parent overreacting.” I explained the situation, but the doctor informed me that there were no tests to order, as both boys were asymptomatic. She did say that we had done the right thing by showering them first (no showers in the ER), and she prescribed topical and oral antibiotics for 5 days as a precaution. This may have been partly because Corey has tricuspid atresia, however. Better safe than sorry with the heart child.

The boys took the entire ordeal in stride. Unlike their mother and grandmothers, they were never scared. They did ask some questions, but mostly they were interested in working the TV remote and making the hospital’s automatic chair go up and down, up and down, up and down. At one point I was getting ready to text our family members to give them an update, and I asked the boys if they had anything to say. They played dead on their favorite automatic chair while I snapped their picture, and they said, “Yeah. Tell them we’re gonna die, but that’s okay because we get to go up and down on this chair.”

Right. It’s all about the chair. See? Excitement room.

The morning after our ordeal the boys greeted me with impy grins and jokes like, “My leg fell off in the middle of the night!” Or, my personal favorite, “Feel my ear. I think it’s loose.” Nice. Any chance to taunt their mother. Luckily they are fine, though, and I am very relieved.

However, I’ve had enough of the excitement room to last a lifetime.

 

And the Great Agent Search is……

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Over. No dice. I did not find an agent for my book. Which is okay. I knew it was a long shot. I need to remind myself that this rejection is not a reflection of my work. It’s a reflection of the book’s marketability. I heard, over and over, that while this work is important, it’s too niche of a market. Still, I’m glad that I tried this route first.

What’s next? I will try approaching small publishers directly. I think I have a better shot at that. But, if that doesn’t pan out, I will self publish. In that case, I think the people who need the book will find it, and that’s really the most important thing to me. I wrote the book that I wanted when Corey was diagnosed with tricuspid atresia. But let’s face it, Corey has a rare defect, and (thankfully) there aren’t a lot of people walking in my shoes.

However, having said all of that, I still feel that CHD awareness is important. Extremely important. There are so many people who have no idea what it means to have a child with CHD. If you say, “My child has cancer,” everyone understands you immediately. If you say, “My child has a congenital heart defect,” many people look at you like you’ve got three heads.

So I thought about ways in which I might reach a wider audience. And I think I’ve found a solution. Fiction! I’m writing a novel about a woman with a heart child. I’m about 2/3 of the way finished, and I’m hoping that, if it’s good enough, it will reach that wider audience that I am striving for.

Wish me luck….

Time Machine

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If you had a time machine, where would you go? Or should I say “when” would you go? People are fascinated by the concept of manipulating time. It’s a common theme in pop culture, splattered throughout literature and the movies. From a Wrinkle in Time to “Back to the Future” – who hasn’t thought about the idea that time is linear? 

This week’s WordPress writing challenge is about this very concept. If you had a time machine, what would you do with it? Personally the biggest temptation would be going back in time to “fix” moments of regret. Hindsight is always twenty-twenty – who doesn’t think, “If I had to do it all over again, I’d do X, Y and Z differently?” But that’s a dangerous road to take.

I think about the idea that, had I waited for one more month before trying to conceive Corey, I might not have a heart child. I might not have had to live through the hell that is the early life of a child with tricuspid atresia. He wouldn’t have been forced to suffer through it either. Maybe my first child would have been healthy. That’s a tempting thought, if I am honest. The child would not have been Corey, though – he or she would have been a different person entirely.

And of course I love Corey with all of me. I can’t imagine a life that doesn’t include him. Getting to know him, getting to know myself through him, has been a privilege. No matter how much time I have with him, I know it is a gift. And at my core, I believe that I am meant to be Corey’s mother – it’s my path to walk in life. In which case perhaps the time machine wouldn’t make any difference.

There’s also the idea that, should you alter one regrettable part of your past, you will also inevitably alter many more aspects of your present and your future. If there was no Corey, there would be no Mason either. Mason was conceived at a time that worked between Corey’s surgeries. No heart child, no surgical timeline, and suddenly there is no Mason. He (or she) is someone else entirely. Or perhaps there would be no second child at all.

Think about all the hundreds of important decisions you’ve made in your life. All of them led, in one way or another, to where you are right now. Right this moment. Alter any of them, and perhaps you are in a completely different place, married to a different person, living in a different state or country, doing a different job with a different boss. Instead of Grace the cat you’ve got Fido the dog, because your new spouse in this different reality is allergic to cats.

It’s wild to contemplate. So I think I know exactly what I’m going to do with my time machine. I’m going to borrow some TNT from my son’s Minecraft game and blow it to smithereens. Then I’m going to cook dinner for this family that I love in this house that I love in this town that I love. 

Fear Factor

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We are all afraid of something. Or perhaps we are afraid of many things, but there is one thing that comes immediately to mind when someone asks, “What are you afraid of?”

I was trolling the WordPress daily prompts again, contemplating the different ideas tossed out to bloggers. One suggested writing about a time when you ate humble pie. I thought, “Well I must have eaten humble pie at least a dozen times, but I can’t think of a single specific scenario worth writing about.” So I ditched that one. Next!

I found “fear factor” (http://dailypost.wordpress.com/2013/11/28/prompt-fear-factor/) and thought, well this one is obvious. My greatest fear is probably the same fear that all parents of CHD children share. I am afraid my child will die. It’s hard to acknowledge this fear. It’s hard to say it out loud. Somehow that makes it more real. But it is there. I just choose to live around it. In spite of it. I remind myself that tomorrow is promised to no one, and whatever may come next, I have done right by my child.

I’ve thought about it a bit more lately, because of the good news I received from my cardiologist about my own heart. Fearing that you may outlive your own child is a terrible feeling. And so there was some small comfort in knowing that my own heart was weak, and maybe I wouldn’t have to suffer that fate, simply because I would go first. Before my time, but before his time as well. I am glad to know that I will be here to see both of my children grow up, but now I have come back again to the idea that it might not be me first.

I have a friend whose child has cystic fibrosis. Sometimes I wonder how she lives with this. And then I think she must live with it the same way I live with Corey’s tricuspid atresia. I remind myself, tirelessly, that Corey lives well and is happy now. I remind myself that where there is life, there is hope. I remind myself that it is not in my control. It is not in my hands. It’s in God’s hands, and I just have to accept the road ahead as it comes.

But I really hope the road ahead is less rocky than the road behind.

PS – Thanks to The Huffington Post for making me laugh with their hilarious fear photos from the Nightmare Fear Factory. (http://www.huffingtonpost.com/2012/10/18/nightmares-fear-factory-haunted-house-photos_n_1980308.html#slide=1646897)

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!

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!