Tag Archives: CHD

Think major league baseball is competitive? Try little league.

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“It’s the bottom of the last inning, The Rays are up by two runs, and there are two outs. Can they hold on for the win? Here comes the pitch. And it’s strike one! Here comes the next pitch. Strike two! This kid is on fire! Here comes the next pitch and….it’s strike three! The Rays win it!”

That wasn’t the end of the last Oriole’s game against Tampa Bay. That was Corey’s second playoff game, the game his little league team, The Rays, played against the number one team in the league, the White Sox. At the end, Corey was the catcher, teamed up with a boy who is the best pitcher I’ve seen in this age bracket – he’s the closer, and together he and Corey make a lethal duo. The Rays were clearly the underdogs, but they played hard and never gave up. The win sent every parent and grandparent on the sidelines to their feet in a standing ovation, and almost all of us had tears in our eyes. The win sent our underdogs to the championship game.

When Corey was diagnosed with tricuspid atresia, his father’s first heartbroken words were “no sports.” He’d grown up playing baseball himself, and now we thought our firstborn son would have no chance to experience this part of growing up. If he lived at all. But in time we learned, from Corey’s pediatric cardiologists, that he could “self regulate.” So we tried soccer. Too much running. We tried t-ball, and he loved it. And he was good at it – right from the beginning. He’s smart, and he’s got great hand-eye coordination. It didn’t take long for him to decide that baseball was his sport.

That was six years ago. Once Corey switched from t-ball to baseball, that was the end of participation trophies. He hasn’t earned a trophy in years. Last night, at the championship game, he finally had a crack at being number one and bringing home that trophy. And oh, he wanted it. And we wanted it for him.

Our boys went into last night’s game against the number two team. Still the underdogs. Still with great attitudes. They stood up to the pressure, including all of their wild banshee screaming parents (ahem, guilty – I am THAT parent) endlessly cheering on the sidelines. We were all glued to our seats, calling out “good eye” and “good swing” and “nice hit” and “great pitch” and on and on and on. These kids are nine and ten years old, and they just went out there and did it.

But did they win? Or did they crush our dreams of victory and a shiny trophy for the mantel? That’s right I said “our dreams” – at the beginning of the season, we were losing left and right, and I wasn’t particularly invested in anything other than just a learning season. By last night I was all in – I wanted that trophy for my kid like a junky wants his next hit. I think the only person who wanted it more was Damian. All that sports intensity that just lives inside him came right out last night.

It all came down to the last inning once again. In little league, a maximum of five runs are allowed in any inning except the last inning, when a team may score unlimited runs in order to win the game. We were up 13-7, but they shut us down and stopped our boys from scoring even a single run in the last inning. We had to hold them, just like the previous game. Out came Corey as catcher and the closer to pitch.

I sat on the edge of my chair, bit my nails, and watched the umpire. They allowed one base hit. But no more. In no time flat, the closer struck out three kids and the crowd roared to its feet in a victory cheer! They did it! The boy with a half a heart played a banner game and helped his team to win the championship game. Did I mention that the trophy sure looks nice on our mantel? Nothing quite like the words “first place.”

And did I mention that Corey, along with two of his other teammates, made the all star team? Practice starts tonight…. One last thought – IN YOUR FACE, CHD!

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……..

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.

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. 

What do age and time really mean?

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People often say that age is just a number. Anybody facing a midlife crisis probably thinks those people can go suck an egg. But perhaps it’s just another way to say “I am content with my life right now.” It’s blase, laissez faire, devil-may-care to contend that the number of years you have lived on this earth is irrelevant. It’s human nature to freak out a little when you reach a certain age. Though what that “certain age” is varies wildly from person to person. The concept of time has different meaning for each of us.

When I turned 25, I panicked a little. I thought, “I’m half way to 50, and my life is not what I thought it would be.” I was single with no boyfriend and no prospects, no children, no master’s degree, living with a friend and her four-year-old son. I was not happy. I did have a college degree and a good job, however, so I got over myself and decided to figure out what changes I could reasonably make. There was a lot of whining and several pints of Ben & Jerry’s involved in that getting over myself process, but I managed.

Age 30 was a blur. I got married the very month before I turned 30, and with the wedding, honeymoon, and then discovering I was pregnant the very first month of my marriage, I barely even noticed the changing of a decade. Unlike at age 25, at 30 I was happy with the state of my life. I’d jumped from the “go suck an egg!” camp over to the “meh, age is just a number” club. I was in good health, and I had no real worries. I felt indestructible, like nothing bad could happen to me – the way a person feels before tragedy has touched their life. 

But then my life went to hell in a day. October 15, 2004. The day my OB/GYN said, “There’s something wrong with your baby’s heart.” Time after that had completely different meaning. The days between my baby’s initial diagnosis with a congenital heart defect and the confirmation that he had a chance at survival were the longest of my life. They seemed to stretch on endlessly, like the tunnel in “Poltergeist” that elongated right before JoBeth William’s eyes as she’s trying to reach her child. It seemed impossible that she would ever reach the end of that tunnel and get to her baby. 

Time after those initial days changed in meaning as well. The first year of my son’s life was an eternity while I was living it. Heart failure, medications, surgeries, and the ever-present fear. But looking back on it now, it seems like a blur. Just a blip on the radar. I feel the same way about my second son’s first year. It was a completely different experience because he is healthy, but sleep deprivation is torture even if there isn’t an underlying note of fear. And so the first year felt long while I was living it, but now that he is seven years old, the baby days seem like a brief moment.

Which brings me to another age-related cliche that people like to throw at me mostly when my boys are acting like crazy brainless beasts out in public (e.g. the bowling alley birthday party). You know what it is. “They grow up so fast!” This phrase forces me to nail a smile on my face and remind myself that it is not okay to slap people in public. In private, feel free to slap away. If you’ve invited one of these people into your house, however, maybe you should slap yourself. But I digress. In any case, like most cliches, if I am honest with myself I feel the truth in this statement. My children are seven and nine now, and I do feel as if they are growing up too fast.

Because (wait for it) life is short! That’s right. I said it. And I bet you’ve said it too. Unless you’re a Mormon missionary in Uganda, in which case maybe you’re going with “life is long.” Regardless, time and age are all filtered through individual experience and human perception.

I’m about to face another decade change, which is what prompted this post on the Weekly Writing Challenge from WordPress. I’m not as panicked about this milestone as I was at age 25, but I’m not as laissez faire as I was at 30 either. Life is more even-keeled and normal these days, so perhaps I will take it in stride. But we’ll see on April 2nd. Maybe I’ll post pictures of myself proudly wearing a tiara with a giant number on it. Or maybe I’ll hide in the closet with a pint of Ben & Jerry’s. Or maybe I’ll buy a monokini from Victoria’s Secret and dye my hair orange and start using gangster words like “gat.”

I guess I’ll have to wait and see if age is really just a number.