Wednesday, January 27, 2010

A little secret about me

Before we go on with the list, I want to let you in on a little secret.

I have a cause.

Yes, I am the person who is going to annoyingly ask you for money or to come to an event or talk about the cause at a party when you simply wanted to know what beer they have on draft.

So what's the cause?

I'm a heart mom.

And in regular English, what that means is I am the mother of a baby born with a congenital heart defect. In this case, three CHDs.

Now before we go too deep in the story, let me tell you this -- my son is amazingly fine. His heart is now whole and basically perfect. In the world of heart moms, I seriously have the lamest story you can have. My son was born, he had to have surgery, he had surgery and he's been and should continue to be fine. So why am I making such a big whopping deal about it then, right?

Well, it's not so much about me in this case. Or Luke.

Through learning about heart defects because of Luke, I've met some other, much more amazing women and men than I. These people were not as lucky as me. Their kids have needed much more intensive care. Their hearts are much more fragile. They need multiple surgeries just to SURVIVE and then even if they do, their heart is always going to be at risk for major complications. And many kids don't live at all. Heart defects kill more kids than all forms of pediatric cancer combined.

Think about that.

How much more often do we hear about kids with cancer? And seriously, is sucks majorly that kids get cancer. It's not about that. It's about the fact that heart defects are just as deadly -- actually much MORE deadly. And so people should know about them and fight for those kids, too.

So. I'm getting involved in the CHD community because I know that so many kids have to fight much harder than Luke did. And some parents don't get to celebrate first birthdays, or take their kids to the beach, or capture them saying the ABCs on video. And even though Luke is fine know, it also sucks majorly that he had to have his chest cut open when he was six days old to have open-heart surgery. There are few feelings more terrible and helpless than watching your infant being wheeled away into an operating room, crying his little brains out, no clue that the world is not so awful as it seems or that is mama and dada love him to freaking pieces. It broke my heart.

So. I hope one day we'll know what causes CHDs so fewer parents have to live through that moment and fewer babies have to go through life with a scar on their adorably soft chests.

That's my cause.

Now, the quick story: Luke was born on July 18, 2008. We knew at that time that he had a ventricular septal defect, which is a hole in the heart. We hoped it was rather small and that it would close on its own. Many do. After the labor (I do not recommend labor) and birth, the NICU team took him away, those big MEANIES. When I finally saw him a few hours later, they told me the first dose of bad news: the hole was bigger than they thought. He'd probably need surgery, but not for a few months. Luke spent that first night of his life in my room, where I broke the hospital rules and pulled him all bundled into my bed with me to sleep for a while in my arms. How could I not?

You would have done the same thing.

The next day, the cardiologist came for a visit. He wanted to take a closer look. He being good at his job found something to be a little uneasy about. And so he told us: Luke has coarctation of the aorta. The part of his aorta that leaves the heart and curves to deliver blood to the right arm and lower half of the body was basically kinked like a big garden hose. It wouldn't be a big problem for a few days, when this magical little thing called the PDA would close. Until then, the heart would work. When it closed, it wouldn't, and Luke would go into heart failure. The diagnosis: sturgery as soon as possible. They whisked Luke away right then back to the NICU, where he'd wait for a helicopter to come and pick him up to fly to another hospital.

That sucked.

Once there, he spent six days in the NICU.

He wasn't always thrilled about that.

Then on July 24, early in the morning, he underwent open-heart surgery. It was supposed to take four hours, but took only three because our surgeon is a serious rock star.

Afterward, he looked like this.

That sucked, too.

But besides one pesky blood clot issue, Luke recovered like a dream. Off one machine, than another, than another, than the ventilator, then the drugs....

We were off the PCTU floor, a floor just for kids who have had heart surgery, in three days.

We spent another four in the general care area. Luke started to eat. He started to look .... healthy.

And on Aug. 1, with more relief and excitement and tiredness than you can image, we went home.

And since then, he has been almost normal. We got off the meds quick. The surgery was perfect. There have been no complications. He got a few special vaccinations to ward off RSV, and he got to be front in line for the H1N1 vaccine. But other than that, our story of worrying about Luke's heart should be over.

Some people probably think it is odd than that I'm now getting involved in congenital heart defect awareness. It can sometimes seem like a competition sharing these stories, and I can feel like mine isn't dramatic enough or Luke was sick enough to qualify. Well you know what? It still was no fun, and it is still nice to know that parents going through things like this can now find better support than I did.

And more people should know about this because, honestly, it is much more likely to happen to your kid than most anything else. 1 in 100, folks. Maybe if we spread more awareness about that, our country will devote more money to finding out WHY that is happening. Or find better ways to save these kids, so fewer have to die. Right now, only a fraction of a penny of the money spent on medical research goes to heart babies.

That's my cause.

I will shut up now, step off my soap box. I really don't want to be all in-your-face with the preachy stuff. I hope this doesn't come across that way.

But this is part of my story and part of my life now. So it should be a known part of this blog.


  1. Krista, I love your blog! And I think I could've written this post too, just not as nicely as you have. I have come across some in the CHD Community who would make us feel like our stories (or, rather Drew and Luke's stories) aren't as important because they are *fine* now. Well, it still sucked for all of us to have to go through what we did. It still sucked to have my baby de-sat and turn purple and scream out for me. So, I'm with you sistah on this one!

  2. Thank you so much for sharing this post for my blog event!

  3. Thank you for sharing your story. I don't think anyone should compete on whose child is better or worse...they were all born with congenital heart defects...and that is bad. We have a lot of CHDs in my family and many of them have been fixed...still doesn't mean my in-laws didn't go through the same emotional roller-coaster we went through. I wouldn't wish a CHD on any family.

    I am also really happy to read that you will continue to be involved in awareness. It is something that is needed and hopefully someday no other family will have to hand their little ones over to a surgeon to fix their broken hearts.


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