Tag Archives: guilt

Hopkins.

The early morning of Monday, October 1st, 2007 was one full of so many raw emotions. We had just left the operating room, where we watched our 5 month old daughter scream and cry with a small mask over her nose and mouth, but then drift off from the anesthesia. Tears freely falling, our hands sweaty with anxiety, our bodies shaking, and the sadness of having to watch our daughter being forced into a deep sleep for the 2nd time in a week. It was so much.. too much..to take in.

We collapsed into 2 seats in the narrow hall of a waiting room while a surgeon and his team prepared to open up our infant’s chest for the 1st time. No amount of preparation prepared us for this day. For this moment. But it was necessary and we never questioned why were going through this.

We had spent the evening prior bathing her and absorbing her smiles and giggles like sponges. We watched her splash and kick those chunky feet. Oh she smelled so good when we laid her down for bedtime. I still love sniffing her head.

In the waiting area, we started to feel claustrophobic. I kept thinking of the smell of her hair. She still smelled good when she was laying on the operating table.  We went and grabbed something to drink and made way for our van. The novelty of our van’s DVD player was still new so we watched “Little Miss Sunshine” with our seats propped all the way back. I had to re-watch the movie a year or so later. I remembered nothing about it because all I could think about was Natalie. We both equate that movie with Natalie’s first open heart surgery.

Around 4pm we were called and told to come back to the building. We were very close since we never left the parking garage. They were finished! We rushed back to the waiting room and within about a minute or so we heard the squeaky wheels of a metal crib being wheeled from the OR. I jumped out my small chair. I almost didn’t recognize her.. she was so pink and milky-white. She looked like Snow White with blonde hair. It’s hard to not see the tubes and wires and rows of medications attached to your child, but I spent several moments just staring at her pink baby toes and ruby red lips. I had never seen her look so healthy since.. never. The crowd of people taking care of her followed her metal crib down the hall and behind them was the surgeon.

The man himself- Dr. Luca Vricella comes to talk to us. He told us how perfect everything went. While he spoke to us he teared up and then hugged my husband! I wish I had gotten a hug but I just stood there crying and attempting to smile. I wanted to smile but I was just so full of emotions. It’s all so bittersweet..that moment. Bitter because you have no clue what the recovery will be like for your infant. You have no clue what to expect. So sweet because this man just saved our daughter’s life and he’s standing right there with us and taking in this joyous moment with us. He oozed compassion. There’s a 4 minute video below which features Dr. Vricella and his heart transplant patient Olivia. It’s a really touching story.. he oozes compassion and hope in this video and he’s exactly like that when standing in front of you..

In the summer of 2008, ABC featured a 7 episode documentary titled “Hopkins”. It’s by the same creator of today’s “NY Med” Terrence Wrong. They featured our hero Dr. Vricella and just as shockingly, our pediatric cardiologist Dr. Ravekes! I remember shouting at the screen “OHMYGOD IT’S OUR DOCTOR YOU GUYS!!”  when his face was there on our tv set. We saw Dr. Ravekes every six months right up until about a week or so before we moved here to Colorado in April of 2009. He also took great care of Natalie before her surgeries, keeping a really close eye on her when we’d take her for weekly weight checks at Johns Hopkins. We had the chance to mention the show to Dr. Ravekes and he was so cool about it.

And now Dr. Vricella is John Hopkins’ Director of Pediatric Cardiac Surgery! Totally not surprised. And it looks like our cardiologist is still there.

Those men…. that hospital… it couldn’t have gotten better. We were lucky to live where we did at the time because Natalie had the greatest minds in the world caring for her. What more could a Queen need…

community and loss.

When the CHD community loses another fighter, the wave of shock and sadness never recedes fast enough to take a good deep breath until the next wave.

When I hear about another loss, it’s just as devastating at the first loss I ever heard about when I entered this community 5 years ago. It never gets easier. In fact, it gets more difficult to bare. The weight of sadness on the heart is too heavy to hold. It really does pull you down. I want so badly to hug these parents who experience these losses and it sucks so much that I can’t.

In our journey we haven’t yet met too many families in Colorado affected by CHDs. A few, but not many. And in our journey I have yet to meet a family who is affected by the loss because of it. I’m sure in some Freudian way I’m doing that on purpose, to avoid the pain or something. Because it will boil down to something that every parent of a CHD survivor hates to confront…

their child’s own mortality. It is awful to feel that fear because first of all, the most recent losses and every past loss has zero to do with how I feel. There’s the guilt of even daring to “go there” with your thoughts. How dare I even think about my own crap when there’s a parent shedding tears and enduring such excruciating pain? I don’t have the right.

But I’m human. We’re all human and we’re all in this shit together. Despite our own fears, worries, guilt, tears, and anxiety, we pull together.

I don’t tell Natalie about the losses.

She sees the beautiful photos of warriors who are still with us and are not on this earth. I don’t decipher the 2 for her. So while so many of us mourn, show our support and shed tears for the fallen,  the only thing I can do about it, once it hits home, is to hug my own warrior a little more and just keep appreciating every second with her. The smell of her hair, the dimples on her cheeks, and that wonderful belly laugh.

 

no apologies.

If there’s one thing I won’t ever do again is apologize for how well Natalie is doing. Sometimes I use a simpler word to explain her current condition: stable. It’s quick. It’s easy. It’s straight to the point and easy to understand.

But in actuality Natalie is more than that.

Not a single day goes by where I don’t feel proud and lucky to be a “heart mom” of a kid who reminds me of why I’m so proud and lucky. Without seeing her scars you could never tell how this huge 44 1/2″ tall and 42 pound kid had a severe hypoplastic right heart. When I’ve had the chance to raise some extra CHD awareness (spreading the knowledge everywhere we go) strangers are stunned. So am I! I’m not even sure if stunned is the right word. I need a more severe word.

In the CHD world you are surrounded by such a wide mix of situations, stories, and struggles. No two stories are ever (or will ever) be the same. Then if you factor in how even cardiologists, specialists, pediatricians, and adult cardiologists depend on these current survivors as new scientific guinea pigs, well then it sort of becomes even more awesome to just blow their minds. Even they don’t have all of the answers or total understanding of how one child can pass away from a defect that another child thrives with.

She’s more than stable. She’s doing fucking fantastic. I sometimes catch myself saying “I’m sorry” more often than I ever need to. A bad habit that stretches from “I’m sorry for moving too slow”all the way to “I’m sorry that Natalie didn’t need a feeding tube”. Let’s get real here- it’s slightly uncommon to hear about children thriving and doing fantastic in the CHD world. Are there others just like Natalie? Absolutely. Are there too many not thriving like Natalie? Very sadly, yes. Everyday I feel a little guilt seep in (and on top of the guilt already piling up) when I read stories and see photos of children and adults not doing as well. Even pangs of guilt hearing about 6, 8, or even 12 multiple heart surgeries. Natalie and I sit there with her #4 and don’t know why it’s only 4. It actually makes me feel really bad. Which is probably really stupid.

Yeah. It’s definitely really stupid.