Tag Archives: single ventricle

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!

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……..

The Beginning

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Every parent remembers the moment they found out their first baby was on the way.  It’s one of those moments in life that comes back with spectacular clarity.  Vivid details.  Where you were, who you were with, how you felt, maybe even what you were wearing.  There’s nothing quite like that moment.  Your life changes forever in an instant, and it’s not even a cliche, it’s just a fact.  Whatever happens after that moment – joy or tragedy, and everything in between – that moment is forever.  

This picture represents the moments after I took a pregnancy test in 2004 and discovered that I was pregnant with my first child.  It absolutely tops the list of happiest moments in my life.  I was ready to be a mother by then – more than ready, I was itching for the chance to hold a baby of my own.  To snuggle a sweet little chubby-cheeked bundle of joy, to hear that pitter-patter of little feet, to see the wonder in my child’s eyes when he or she got to try trick-or-treating for the first time, to see that innocent face on Christmas morning beholding all the wonderful presents under the tree.  That moment was a dream come true.  

That was the beginning of Corey’s story.  Now I’m going to walk through each of the points on Corey’s congenital heart defect (CHD) timeline, beginning with the first moment, his CHD diagnosis.  (Please see the link on the home page for the complete timeline, or click here: https://jenniferannefleming.wordpress.com/coreys-chd-timeline/).

The next moment of my pregnancy that stands out in my mind with absolute clarity was the opposite of joyful.  It was devastating.  October 15, 2004.  That was the date that Corey was diagnosed with a major congenital heart defect.  The end of our dreams of a healthy baby.  I remember where I was, who I was with, what I was wearing.  I thought I’d felt pain and fear in my life before that moment.  I was wrong.  There never was pain or fear before that instant.  

Corey’s heart defect was discovered during our routine 20-week ultrasound.  I woke up that morning full of joy.  All I could think about was learning the gender of my baby.  And I did.  I learned that I would have the son I always dreamed of.  But then I learned that something was wrong with his heart.  We would need more tests to determine exactly what the problem was.  My OB was blunt.  My unborn baby might be a candidate for treatment.  Or he might die.

We were referred to the hospital at University of Maryland in Baltimore, and we went immediately, that same day.  We met with a perinatologist.  I had more tests.  I felt terrified, and I had to spend all my energy concentrating on not falling apart.  I needed to get through the tests.  I had to know what would come next.

The news was worse than we expected.  The perinatologist (incorrectly) diagnosed Corey with Double Inlet Left Ventricle.  It is a single ventricle defect, and Corey does have a single ventricle defect, but we would not receive the correct diagnosis of tricuspid atresia for many more days.  The picture painted by the perinatologist was horrifying.  He led us to believe that, should I continue with my pregnancy, my child would be born only to suffer and die.  He offered us termination on the spot.  I considered it.  How could I bring a baby into the world and force him to suffer and then watch him die?  

For a few moments that day, I felt like there was no air.  Either I would kill my child willfully – this child that I had wanted so desperately for as long as I could remember, this child who was named, who had fingers and toes, who was blood of my blood and bone of my bone, this person I loved already like no other – or I would carry him and carry my sorrow, give birth to him, and bring him home with me, where I would count his fingers and toes, fall more in love with him, and then I would watch him die.  Termination or compassionate care.  Is there a more soul-crushing decision a person can make?

The only other option was “get more information.”  When the perinatologist threw that on the table, we grabbed onto it like a life line.  I had next to no hope, but I could not make a life or death decision that day.  I could not do it.  Neither could my husband.

That choice led to immediate amniocentesis in order to do complete genetic testing on Corey.  The doctor told us that, should the tests return any kind of genetic abnormality, the outcome was likely to be death.  And he said it with no compassion.  He saw a burden on society in Corey.  He didn’t see the A student who plays baseball.  I hate him for that.

And then we waited.  In a fog of fear, we waited.  It would be days before we got that information.  Days before we found reason to hope again.  

We waited.