Saturday, November 30, 2013

Makes me that much stronger...



Hi my loves.

I don't usually do weekend posts, but this is a special day.

Twenty-six years ago today (maybe at this very moment!) I was getting wheeled into one of the operating rooms at CHOP for my last open-heart surgery. Heart surgery numero FOUR.

Twenty-six years. Since I'm only 24, I'm not sure how this is even possible.

Erm...

Even though this blog revolves around my journey with lupus, I am most proud to be a congenital heart defect survivor. With the exception of a handful of older survivors, my generation is really the first with congenital heart defects to live and thrive well into adulthood. Some of the girls I talk to on a regular basis (that's you Ruth, Amy and Lauren!) were essentially guinea pigs in the operating rooms, and are now running marathons, running after her two beautiful boys, graduating from Columbia... who would have thought?

Dr. Norwood (heard of the Norwood procedure? Yeah, that guy) thank you for being blessed with giant man hands that could miraculously patch up hearts the size of walnuts. Thank you for pushing boundaries when no other cardiothoracic surgeon would. And though I wouldn't wish getting a chest tube pulled without getting ANY type of pain medication beforehand (what were you thinking, you mofo?) on anyone, thank you for my insanely high pain tolerance.

Dr. Friedman, "Sidney Baby!" thank you for diagnosing me when other doctors told my mom I'd never need heart surgery (4 surgeries later...), and for always being so kind and gentle with my family and me. For saving every single picture I drew for you. And those bow ties you wore- they were the bees knees.

Dr. W., thanks for continuously instilling that I wasn't "cured" and always preparing me that there WILL be heart surgery again in my future. Also, thanks for making my mom get me that 6 pack to drink while wearing a holter monitor before I went off to live at college. Nice touch.

Dr. D., ahhh, Dr. D. Thanks for putting up with me. And for insisting Brie get her cholesterol checked. Which she still hasn't done.

To the dozens of nurses who took care of me over the years... where do I even begin? You are the ones who never left my side. Thank you for sneaking me Tylenol when Dr. Norwood wasn't looking, for staying with me when my Mom had to step out for a second, for letting me hang out at the nurses station which led me to my amazing nursing career. For doing everything possible to get me to drink when I was being a miserable wretch and wouldn't drink anything out of spite, even though I was surrounded with every flavor milkshake, jello, ice cream, juice, and soda a child could dream of. I still can be a miserable wretch twenty-six years later. But thanks for making sure I didn't have to get an IV that day!

Dad- I'll never forget that day you walked into my isolation room after emptying the shelves at Kiddie City.

Mom- Duckie slippers. Fruit Loops and Dr Pepper at 4am. One million kisses.

Brie- Upside down.

This little heart of mine has traveled a bumpy road getting to where she is today. And I wouldn't change a thing.


 Post-op Day 1

 Post-op Day 2

Maria- my FAVORITE nurse. I would hang out with her at the nurses station and pretend to fill out charts. She drew hearts and flowers on my "hat." My inspiration to go into nursing myself. Scary to think she is younger than I am now in this picture!

 My best friend, my one-woman cheering squad. My Big Sissy, Brie


Post-op Day 4 or 5. See that in my hand? That's the brand new bottle of hot pink nail polish the anesthesiologist promised to buy me.  Open-heart surgery? Easy peasy. Take off my nail polish? Total meltdown.


In the wise words of Christina Aguilera...

Thanks for making me a fighter.

14 comments:

  1. Happy heart anniversary!! Such a beautifully written piece.

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  3. Hot pink nail-polish and a heart that just keeps on fighting. Happy heart-aversary Marla! I for one am happy those docs and nurses, and you, never gave up. You're one swell lady. P.S. Did your doll (post-op day 1) have a blonde Jerry-curled Mohawk?

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    1. Hahahaha, why yes, yes she did. She also said "Brooke Shields is Grilled Cheese" on her butt. Don't ask. But, if you saw my hair right night, it's very frightening that I have the exact same 'do as Old Baby (yes, there was a New Baby) Perhaps she could see into the future...

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  4. Dude. How you gonna dime me out on the cholesterol thing? I never had a steady girlfriend, but I did get kicked in the balls by a mule once.

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    1. Also, I can't get over how much PJ looks like little you, which make sense somehow since I see Mom-Mom in him so often.

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  5. This was SUCH an inspiring post. i love how excited you were about that nail polish. A girly-girl at heart <3

    Kristen @ Your Beauty Fix

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  6. Wow, what an amazing story you shared... I feel enlightened because I guess I hadn't realized that your first open heart surgery was at that tender age! I knew you were kick ass, but didn't realize you were THAT amazing! : ) You haven't changed much - Look at what a cute kid you were! And you look totally unfazed.

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  7. Marla you never FAIL to inspire others with your wonderful spirit and positivity! Thank you so much Marla, seriously!!

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  8. Oh my stars amazing. What a journey!

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  9. I can't believe you went through all that as such a young kid. CRAZY. So glad you were able to survive that. Great doctors are an understatement. You have been a fighter and survivor since the early days so it doesn't surprise me at all that you are not letting lupus win. Thanks for sharing your story.

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  10. Aww love this post! And I love that you ended up going into nursing because of your experiences as a kid. Love when things come full circle!!

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  11. what an amazing story - thank so much for sharing. i can't believe you went through all of that as a child! i love that the staff were so awesome; it's nurses and doctors like that that make the whole experience easier for the whole family.

    -kathy
    Vodka and Soda

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  12. Girl kudos you take the cake - no one can complain to you about anything, EVER. The world is better with you here and happy to hear you're still going strong and hopefully for many many years more! :) Definitely send those folks some cookies! And I do heart bow ties, I love when men wear them! -Iva

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Comments, coffee and bacon rock my socks! But, since you can't leave coffee or bacon (they really should make an app for that), then leave me some comments! I love hearing from you, and always do my best to reply to everyone. <3

She's a small wonder

She's a small wonder
Thirty-something foul-mouthed girly-girl. Wife. Kitty mama. Daughter. Sister. Aunt. Friend. Pediatric Cardiac ICU nurse. Wannabe super hero. Lives life to the fullest with systemic lupus erythematosous, an assortment of autoimmune diseases, and congenital heart disease.

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