Reality Check

posted by Momo Fali on January 16, 2014

Today was our annual reality check.

Before autism, eye surgeries, infections and hospitalizations; before kidney problems, hearing aids, choking and vomiting; before speech, occupational, physical and behavioral therapy. Before it all, there was his heart.

I was six months pregnant when he got his first echocardiogram. I waddled down the halls of our local Children’s Hospital, then laid upon a table while a doctor looked at the right ventricle of his heart. It couldn’t have been much bigger than a peanut. I was decidedly bigger than one.

When his rare heart condition worsened two months later, they took him from my belly and whisked him away to that same Children’s Hospital in an ambulance while I, again, laid upon a table. This time I was miles away and I didn’t get to see him until two days later when they let me leave the hospital for a few hours. It was Mother’s Day. It was fitting, but gut-wrenching.

They told us he would be sedated until he reached five pounds and then he would need open heart surgery. They were wrong. He came home three weeks later without that surgery. Almost 12 years later, though, it’s still looming over our heads.

So each year we trek back to those same halls and now it’s my boy who climbs onto the table. We are all stronger than we once were. He is 52 pounds of unstoppable energy. We are not. But, when we spy parents wearing “CARDIOLOGY” badges we smile, nod, and give each other mental fist bumps.

Echo

He still needs open heart surgery at some point, but we’re waiting. Stalling, if you will. Hoping, praying, and prodding the doctors to improve their technology so they won’t have to cut his chest open, spread his ribs apart and cut into his heart with a knife.

He had a heart catheterization when he was 13 months old and it was one of the easier surgeries he’s had. This is what we hope for. This is why we’re glad he’s small and grows slowly, so that his heart can keep up and each year that passes we know the doctors get closer to fixing this in a less invasive way. Today I chanted, “We want a heart cath! We want a heart cath!” If only my cheerleading could be enough to make it happen.

For today, though, he is stable and that’s really all we can ask for. That, and one more year until we have to walk those halls again.

    Comments

  • Melisa


    I’m so glad he is stable and that this appointment went the way you were hoping it would! Give him my love, and a hug. (and tell him I’m thinking about him!)

    In fact, all that to you, too. xo

    • Momo Fali


      Thank you. We’ll take it!

  • Tabatha


    Supraventricular Tachycardia at 28 weeks pregnant, after the spine and the kidneys.

    Fistbumps and hugs all around.

    • Momo Fali


      I only fist bump strangers. You and I will do a full-on chest bump next time I see you.

  • Rebecca {foodie with family}


    Oh buddy. Prove the docs wrong and show them what a pure heart can do!

  • Kathy H


    Such a good mommy, we see where he gets that strong heart. Glad it went well today, you needed an up day.

  • Amo


    No words, only love coming your way. This precious little man is so fortunate to have you for a mother.

  • Zak


    Rockstars. All of you.

  • Lisa @ Crazy Adventures in Parenting


    If you need another cheerleader, I’m your gal. Many hugs and love to you all, sweetie.

  • Preeva Tramiel


    I hope you keep stalling and he keeps growing. Technology moves forward fast. Keep you eyes open and your hopes up.
    Much love.

  • Liz


    I love how you write. Sending love and lots of positive energy your way. Keep stalling, my friend.

  • Shannon


    I never thought I’d be cheering for a heart catherization, yet here I am chanting right along with you.

  • Karen Sandoval


    I wanted to tell you how very brave and strong you are. And Adam too, well all of you. And you have such a gift, you are an amazing writer!

  • Melissa


    Glad that your recent visit went well. My brother-in-law was supposed to have heart surgery when he was younger. However, by some miracle the problem corrected itself at the last possible moment. Progress is made every day. Sending positive thoughts that improvements will be made very soon.

  • vicki


    Sniff. That is all. Just sniff.

  • Loukia


    Just, hugs. You have a great and strong son, and you’re a wonderful, wonderful mom. Every day is a challenge a mom, every day, filled with worry, and for you, I imagine, it’s even more. I wish nothing but the very best, and the healthiest of news, now and in the future for your boy. Every day I am beyond thankful for our health care, our nurses and doctors. Thank God for them. xoxo

  • Wenderly


    Your strength and grace amaze me. Adam knew what he was doing when he picked you to be his mom. You have an army of angels circling you. Remember that on days like this. xoxoxoxo

  • Mare


    Beautiful sharing. I join others here praying for continued good results. What a little trooper you have. God bless all of you!

  • tara


    Ironically, my heart is what hurt when reading this story. I hope the technology improves. Open heart surgery? Sounds terrifying.

  • Meleah Rebeccah


    This made me all teary-eyed. You’re such a strong woman and an amazing mother. I truly hope science and medicine improve technology – quickly – so he NEVER has to have open heart surgery.

  • AlisonH


    Much love to you. All of you.

  • AlisonH


    p.s. Seeing your heart pump on the screen is actually kinda cool: the red, the white, and the blue, swish SWOOSH. Patriotic hearts! (Have had several echos myself at this point, am fine.)

  • Emily


    Oh, I’m thinking of you and am glad the visit went well. Sending love and hugs!

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