why heart

What is Heart? Beyond a magazine and an Instagram handle and a launch party and the just-right picture, what is Heart?

It all comes from a place I wish I had never been.

It comes from heart disease and baby who shouldn’t have to have it.

Though I will never be happy that my precious son was born with a malformed heart, I will be forever grateful for the impact his journey has had on my life and on my heart. This trial, so great in its impact, has left me forever changed.

heart week | the "why" of heart magazine | theheartmag.comHenry.

My beautiful, strong, magnificent son.

Here’s the short truth of it.

If you are close to our family, you know that the news of a third child was not something I had planned. In fact, it wasn’t something I thought I could do. It wasn’t something I wanted. I know. It’s awful and there are a million reasons why I shouldn’t have felt that way, but the thing is, I did. And I couldn’t stop.

So when, after months of contractions and medications to prevent preterm labor, Henry finally started coming for real— I was scared of way more than having to deliver him. I was scared of sleepless nights and a sagging belly and a heart that couldn’t accommodate another person. I was scared of how much he would need me, and whether or not I was up for the job.

But he came despite all my fears and worrying, and his first few hours were uneventful. The labor was short, he slept and ate well, and I must have thought, “OK. I can handle this.” Surely I thought that because otherwise my breath would not have caught when the pediatrician came to visit him that night and told us he had a very loud heart murmur. The music stopped, air left the room, and immediately everything was different.

It was nothing I expected to hear—everything had gone so well, he’d had a great day, easy even. We had made it to the other side where everything works out and goes as planned. This was not supposed to happen.

Still, the doctor told us not to worry. Henry was otherwise fine and could make it a few days until we’d need to drive to Denver to be seen by a specialist. She told us what to look for and that it’d all be OK. We just needed to enjoy him and wait.

That night, Henry began struggling to breathe. He couldn’t eat without throwing up, and suddenly became irritable after nearly a day of being perfectly content. His chest was rising fiercely and rapidly, and though they told me he was likely OK, I knew in my mama gut that he wasn’t. They took him down to the nursery in the middle of the night to check his oxygen levels, and sure enough, they were plummeting. I fought hard to stay awake and hear some news about our precious boy, but the entire thing felt like a fever dream as I wrestled to stay alert.

Finally, when morning came, we knew immediately that things were worse. The nurse came in, without Henry’s bassinet in tow, and told us he’d been struggling to breathe for a while. He was on oxygen, and they couldn’t locate a vein for an IV. Dr. Anderson would be in shortly to advise us on next steps. I began calling relatives to fill them in.

While on the phone with my mom, Chad came in, tears running down his face, and hugged me—“He needs to fly to Denver, babe. Right now. He’s not good. They said one of us can go with him. What do you want me to do?”

I was crushed by the weight of it. The simultaneous sensation of rawness so intense and terrifying, coupled with a feeling of not being in a real moment, was overwhelming. Our pediatrician, Dr. Anderson, who has seen our children more times than I can even count over the last 6 years, came in and said he needed help now instead of later. She suggested we have my parents bring the girls to the hospital to say goodbye to Henry. She hugged me quickly and said it would be alright.

Those hours between 7 and 10 a.m. when the flight team finally arrived, are some of the most difficult to describe. Like being in a movie, but also knowing you aren’t. The kind of movie that, for some sick reason, you feel like you’ve imagined yourself in once before, only this time, it’s not a trial run but the real thing. Things moved in slow motion. We held him, hooked to tubes and covered in pokes and bruises, curtains closed, and cried. Cried for our sweet, helpless, beautiful, new baby. I cried for what I didn’t even know I wanted, which now was, and would possible never be again.

Just the day before, I couldn’t imagine myself making room in my heart for someone else, and here we were, only a day later, not able to imagine ourselves without him.

It is with all thankfulness and appreciation I say, the next parts were rather uneventful. Henry was flown to Children’s Hospital Colorado where he was diagnosed with severe aortic valve stenosis. He was able to return home after 8 days in the NICU there, where he returned 3 weeks later with RSV. Five weeks later, he had surgery to enlarge his aortic valve. It was hugely successful and they believe Henry will be able to function without intervention until little league. Ultimately his valve will need to be replaced due to its incapability of carrying him throughout his life, but for now, our baby is home and healthy and insanely cute.

Unfortunately though, Henry is not cured. There is a part of his heart, a most vital organ, that isn’t as it should be. My baby will walk soon, and then run, and then play, but all that while, we will wonder if he is OK. We will wonder if the silent beast is closing in once again. Every cry, every fall, every fever and seemingly harmless hiccup will cause my lungs to tighten again, like they did those first days with him, because I want him.

I want him to be better than fine.

The thing is that all of this, this turmoil and this unrest, has given me the push that only life and death can give you. It showed me that as quickly as you meet someone, you can love them, and possibly loose them too. It has taught me to love now instead of later.

Watching Henry struggle, and yet continue to smile the biggest smile you’ve ever seen, has made my heart grow Grinch-style. Like times forty. I always imagined I’d teach our children to be strong and to love other people—that’s all they’d really need to know. And yet, in the 400 days Henry has been alive, he has been the one to teach me.

There is no time like the present to say what you’ve always wanted to say, and to do what you’ve only thought was possible later on. Later isn’t coming. It’s now. Now is the time to share your heart, the time to tell your story, the time to build other women up instead of tearing them down. Now is the time to connect, and grow, and be OK with where you are. That’s the mission of this magazine, friends. To stop waiting for that perfect time to be a perfect person, and to right now, this instant, allow yourself the grace you so desperately deserve.

So. Why Heart? Why do I hope you’ll follow along, share the pieces, and contribute your life story to these pages? Why do I hope you will purchase this magazine for yourself and five friends come Christmas? It’s because I deeply, truly, down to my feet, believe that women deserve to feel uplifted. Women deserve to feel connected and supported by others who get it. Women deserve to tell the stories they’re used to hiding, and from that, to find peace and happiness, and feelings they’ve not felt in years.

I started this magazine because I believe it’s important. What happened in our lives this past year was my motivation, but this magazine is not about me. It is about women the world over; a community that spans across those things that normally divide us, and brings us together instead.bio_Rachel-LeBeau

making heartRachel LeBeau