Tuesday, February 14, 2012

National Congenital Heart Defect Awareness Day.. Heart Day!!

Today is Valentine's Day for most...
But the Chris and I don't celebrate it.
Actually before I even met him I thought it
was just a Hallmark Holiday... and still do.
Chris feels the same.

You should tell the people you love, you love
them everyday... and maybe do something nice
for them every so often. Don't just wait for Valentine's
Day to do it!

Today holds a different meaning for some...
including myself. Today is
National Congenital Heart Defect
Awareness Day or Heart Day.

Today celebrates ALL CHDers... young AND old... as OVER 50% of CHDers are Adults. Today we spread CHD Awareness, remember the CHDers young & old who have gone before us, the surgeons who made all the life saving CHD surgeries (the 1st one all the way back in the 1940's!)... & ALL CHD surgeons as well as Cardiologists..... to thank the older CHDers for being guinea pigs (I'm part of an Adult CHDer group, so I will do just that... but in a way I was a guinea pig for Single Ventricle Fontan-ers... the Fontan had only been around 17yrs when I had it.)...AND today is a day to also celebrate CHD Parents because without them, their would be a whole lot less of us CHDers. ♥

Being an Adult CHDer... I thought I'd share how much
CHDers especially the complex CHDers like myself go
through by the time they hit my age... and so you
know, my list is in the middle as I know MANY CHDers
with longer lists, but others with shorter ones...
the point is... ALL of our lists is more than most Adults
will ever go through in a lifetime.

My List... So Far (I have Tricuspid Atresia, Hypoplastic
Right Heart Syndrome...22yrs Post Fontan):

-2 open heart surgeries
-2 heart caths
-RSV days after being discharged from my 1st OHS,
so I was re-admitted for about few weeks
-1 blood clot in right leg after 2nd heart cath
-2-3 code blues (1 for pulling out my vent tube...
so naughty, 1 for a dangerous tachycardia ep..)
-3 eye muscle surgeries (I have eye muscle disease w/weak eye muscles)
-Walking Pneumonia once (that was fun... NOT)
-6 stitches in my bottom right lip (my fault...
I was 7 or 8)
-BAD case of Chicken Pox
-BAD food poisoning w/a few hour ER stay & IV fluids
-Over 3 months of my life spent in patient in the hospital
-About 100 Cardio appointments (maybe more)
-Hundreds of pokes, prodes, tests, an
-Hundreds of doctor appointments for my heart, eyes, back (I have congenital scoliosis), & primary (sick appts)... oh let's not forget the dentist
AND 1 1/2 of braces
-I've taken countless amounts of antibiotics
-Been on at least 20 different medications in my
life so far.
.maybe more, idk (NOT all at once though... usually 5 or 6 at the most at a period of time... right now I'm on 3)
-I've had countless night terrors since I was little (between ages 2-10 they were BAD)
-I've been battling an Anxiety disorder for years... but I will NOT let it rule me!
-And currently having some heart beat and heart rate issues that I'm trying to get to the bottom of (have a history of Tachycardia/very fast hear rate as well.. on meds of it)

AND out of everything I've been through... I have about 22 scars or badges of honor on my body... 12 on my chest from just my 2 open heart surgeries.

I am a PROUD CHD Survivor! ♥

I may physically have "half a heart" but I do NOT have half a life!! ♥

The one thing I LOVE about being an Adult CHDer, is
spreading Hope and supporting CHD families anyway
I can.

***I'd like to share pictures and some information
about some of the AMAZING CHD kiddos
(and their AMAZING families!)...
(this is just SOME... I've made MANY
MANY friendships with CHD families I will ALWAYS

I gave inspiration, love, support, and friendship which
made my mended heart so full of joy... BUT what I got in
return was even MORE special to me... I received
inspiration, strength, friendship, hugs,
and support.

These CHDers and their families will FOREVER
hold a special place in my heart... and I've made some
FOREVER friendships!! I gave Hope to these families for
their CHDers, that CHDers CAN grow up... (even those
with "half a heart"), and live a VERY fulfilling life!!

<3 ~ <3

This is Londan. He has Hypoplastic Left Heart Syndrome (the opp of me). He was 10 when I met him and his family for lunch. We got along very well. He is full of life and an overall spunky kid. He thought it was pretty cool I had scars on my chest too. The thing that touched me was when his mom told me that he said in the car on the way home that since I’m missing the right side of my heart and he is missing his left, that together our heart makes a whole heart. Beautiful. Today Londan is 12 years old, thriving, still full of life, and still full of smiles.

<3 ~ <3

This is Megan. She has Tricuspid Atresia, Hypoplastic Right Heart Syndrome like me. She was 6 when I met her and her family. She was very shy at first, but that is ok… actually it took me back to my childhood as I was super shy too. She opened up towards the end of dinner and hopped on my lap. She can’t wait to meet me again and I can’t wait to meet her again. Megan is just full of life! Today she is in 1st grade, doing awesome, living life, and will be 7 soon.

<3 ~ <3

This is Kyleigh. She has Tricuspid Atresia, HRHS like me. She was 8 when I met her and her family. I had known her mom for a year before we got to meet in person. Her mom, Crisse, and I talked ALL the time on the phone and I talked to Kyleigh a lot on the phone to… so when we FINALLY got to meet in person… it was AMAZING! I love Kyleigh like a little sister and her mom, Crisse, has become one of my best personal friends. I wish we lived closer to each other though… but we talk all the time via phone. Kyleigh is so full of life and just a spit fire! Love her! She is 9 years old now and considers me her big heart sister forever… and that makes my heart melt. Kyleigh is full of life and full of smiles!

<3 ~ <3

This is Hope. She has Hypoplastic Left Heart Syndrome (opp of me). I knew her mom via internet since before Hope was even born! Hope’s mom found my blog, left a comment, and from there we have had a nice friendship and I feel so special I could offer her hope for Hope. Hope was almost 2 when I met her. She was a tiny thing, which I was tiny too. But boy lots of energy, curiosity, and love for life is packed into such a small package. She is on the go! My favorite moment was when I showed her my scar, than pointed to hers… she knew as she pointed at mine than at hers. She is 2 now and doing amazing despite some weight gain issues.

<3 ~ <3

This is Joshua. He has complex CHDs. He was 2 when I met him. He played the whole shy yet I’m going to still look and smile at you cute game… adorable. He was more than happy to sit on my lap, smile at me, hug me… watch out Sarah he is a ladies’ man hehe. ;) Joshua is full of life and is wise beyond his years as you can tell through his eyes.

<3 ~ <3

This is Bayden. He has “pink” Tetrology of Fallot & 3 other CHDs. He was 2 when I met him. He is a spunky little thing! He is curious, adventurous, yet gives you a smile that melts your heart. Brittany you have a ladies’ man too hehe. ;) Bayden likes what he likes and has a kind spirit. He enjoyed sitting on my lap and taking pictures with me. He is full of life and full of energy! Amazing!

<3 ~ <3

This is Jilliana. She has HRHS like me. She was 2 when I met her. She is adventurous, curious, and full of energy. She smiles a lot and knows what she wants. She was so sweet and enjoyed sitting on my lap… she seemed to like me. Jilly has a love for life and exploring. A cute moment during lunch is her eyes lightening up at the big cookie we gave her, yet she enjoyed eating my chips more… she sure loves to make friends… what a cutie. Amazing little girl she is.

<3 ~ <3

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