Tag Archives: congenital heart defect

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.

Famous People with CHD

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I’m still working through the publishing process. My pitch and proposal are written, and I intended to approach small publishers directly, but I have changed my mind and am now searching for an agent. During the course of this search, I discovered that Sylvester Stallone has a child with CHD, as he wrote a forward to a book about CHD. This brought me to a search for famous people with CHD. I discovered this fascinating list, compiled by another heart mom (also named Jennifer – we’re everywhere!), and I wanted to share it here. This is the list as well as the direct link to her blog (I have not changed the list at all):

http://anotherchdjourney.blogspot.com/p/famous-people-with-chd.html

“Famous People with a Congenital Heart Defect

Famous Heart Parents with CHD Kids

Please note this is a list of people that are in the public eye for something other than Congenital Heart Defects.

This specific list is only for those people who are in the public eye for something other than CHD but who also happen to be a heart parent or a CHD Survivor.”

Let’s Take the Heart Child to the Dentist! In the Snow.

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When I think about fun, I think about the dentist. When I really want some excitement, I take the heart child to the dentist. And his brother. At the same time. Because you can never bring enough children under 10 to the dentist. Maybe next time we’ll bring a friend!

Yesterday the boys had their 6-month check-ups at the pediatric dentist. This is always stressful for all the obvious reasons, but, since Corey is a heart child, we get to add in the extra bonus stress of taking antibiotics before the visit. Why does he have to take antibiotics before his routine dental check-up, you ask? Some doctors/dentists feel that there is a great deal of bacteria stirred up during a dental procedure (including cleanings), and therefore it’s a good idea to take precautionary measures for people with compromised hearts. We don’t want the bacteria infecting Corey’s heart.

Corey, thankfully, swallows pills. We hand him his baby aspirin (the only medication he takes daily) after dinner every night, and he just swallows it with his drink. It’s handy when he needs ibuprofen and anything else too. Except the pre-medication for the dentist. This used to come only in liquid form, and he had to take 40 milliliters (8 teaspoons) of that nasty “cherry” flavored gooey foulness. Which he just loved doing, as you can imagine. If you add cherry flavoring to dog poo, do you think it tastes any better? Right. And for any of you that have given your kids liquid medication, you know that 40 mL is a LOT of liquid. Four of those 10 mL syringes. Ack.

So at 7 am twice a year I get to negotiate, cajole, coerce, beg Corey to take all this horrible medication. Once, when he was younger, I just had to hold him down and force him to take it. He cried the whole time and I felt like Conan the Barbarian. I think we’re both still scarred by that incident. But! This time there was finally a pill option. Four shiny little pills – hallelujah! I ask every time for the meds to come in pill form, and every time the pharmacist and the dentist both say “no.” Not this time. They said “yes!” Corey swallowed his four pills like a rock star, and we were ready to go!

Except that it was snowing. Did I mention that it was snowing heavily the morning of the appointment? Heavily enough to close schools? Right. Let’s go to the dentist in the snow!

On second thought, I decided I wasn’t going to do that. Their father was going to do that! I am a full-fledged snow weenie. That’s right – I said it. I do not drive in the snow. If there are 3 flakes outside my window, I’m not driving anything other than a sled. But Damian isn’t. Daddy to the rescue!

Corey took his pills, everybody got bundled up, I handed Damian a steaming hot mug of coffee, and off they went! The roads were bad, but the appointment went well for both boys. In the past, because Corey has weaker teeth due to his CHD, Corey has needed to have some cavities filled. Not this time! It was a clean bill of health for both my boys, and everybody came home safely a couple of hours later.

And then we went sledding……

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!

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.