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When you have 3 appointments in one day, you make the best of it. First Davey had her usual PT appt with Miss Megan, and had lots of fun while doing therapy. Then we had her biannual cardiology check up and echocardiogram with Dr. Rulliard at the Wilson Heart clinic. This appointment gave us some much needed good news and information. We learned that there is a new valve on the market called the Harmony valve, that Davey will most likely be a candidate for when she's ready to have her pulmonary valve placed. Previously and child needing a brand new, aka native valve, had to have open heart surgery to have that placed, but with this new valve they can be placed through a catheter in the groin, and avoid another open heart surgery all together. That information changes so much for Davey, and us as her parents! We couldn't be happier knowing how far pediatric cardiology has come. It's truly amazing and Davey is reaping the benefits of it. 
We had a little johns incredible pizza break before going back out to the hospital to see Dr. Loveland in orthopedics where we were told that Davey is right on track, and doing what's necessary, to help with her low muscle tone and pronation. So all in all we had a great day! Thank you again for all your thoughts and prayers! We will post updates as more news rolls in!  #dailydoseofdavey #ddd #heartsfordaveyjean #mommysgirl #bestillmyheart #sheamazesmeeveryday #pleasestaylittle #nevergrowup #movingmountains #itsthelittlethings #blowsmeaway #sweetgirl #theappledoesntfallfarfromthetree #mymiraclegirl #mywhy #myheart #myworld #myeverything  #heartmom #chdawareness #rockyourscar #heartwarrior #22q #tof #apv #asl #typicallyatypical #differentnotless #perfectlyimperfect 
#dontlettheworlddecidewhatsbeautiful
When you have 3 appointments in one day, you make the best of it. First Davey had her usual PT appt with Miss Megan, and had lots of fun while doing therapy. Then we had her biannual cardiology check up and echocardiogram with Dr. Rulliard at the Wilson Heart clinic. This appointment gave us some much needed good news and information. We learned that there is a new valve on the market called the Harmony valve, that Davey will most likely be a candidate for when she's ready to have her pulmonary valve placed. Previously and child needing a brand new, aka native valve, had to have open heart surgery to have that placed, but with this new valve they can be placed through a catheter in the groin, and avoid another open heart surgery all together. That information changes so much for Davey, and us as her parents! We couldn't be happier knowing how far pediatric cardiology has come. It's truly amazing and Davey is reaping the benefits of it. We had a little johns incredible pizza break before going back out to the hospital to see Dr. Loveland in orthopedics where we were told that Davey is right on track, and doing what's necessary, to help with her low muscle tone and pronation. So all in all we had a great day! Thank you again for all your thoughts and prayers! We will post updates as more news rolls in! #dailydoseofdavey  #ddd  #heartsfordaveyjean  #mommysgirl  #bestillmyheart  #sheamazesmeeveryday  #pleasestaylittle  #nevergrowup  #movingmountains  #itsthelittlethings  #blowsmeaway  #sweetgirl  #theappledoesntfallfarfromthetree  #mymiraclegirl  #mywhy  #myheart  #myworld  #myeverything  #heartmom  #chdawareness  #rockyourscar  #heartwarrior  #22q  #tof  #apv  #asl  #typicallyatypical  #differentnotless  #perfectlyimperfect  #dontlettheworlddecidewhatsbeautiful 
❤️❤️❤️❤️ Vsd patch is still sealed- yay!
ASD still closed with no leaks- yay!
Aortic Stenosis-  Sub-aortic membrane (causing restriction) no growth. Obstruction has slightly worsened. Pressure is higher than last time but still within functional limits. No need for medication or intervention at this time. He said no real worry just monitor for any heart symptoms and come back sooner if needed.
Warned me that apnea can cause cardiac issues (pulmonary hypertension) although there is no concern for that at this time. 
So it's not exactly what I would have wanted (ya know- a fully repaired, healthy, strong functional heart that no longer requires cardiology visits lol) it is welcome news. Wyatt seems to love his cardiologist. He waved, shook hands and was full of smiles the entire 2 hours we were in the office. He didn't even give the tech a hard time when she did his echo 🙌🏻 #nailedit #myhearthero #CHDwarrior #anotheroneinthebooks #mendedheart #rockyourscar #chicksdigscars
❤️❤️❤️❤️ Vsd patch is still sealed- yay! ASD still closed with no leaks- yay! Aortic Stenosis- Sub-aortic membrane (causing restriction) no growth. Obstruction has slightly worsened. Pressure is higher than last time but still within functional limits. No need for medication or intervention at this time. He said no real worry just monitor for any heart symptoms and come back sooner if needed. Warned me that apnea can cause cardiac issues (pulmonary hypertension) although there is no concern for that at this time. So it's not exactly what I would have wanted (ya know- a fully repaired, healthy, strong functional heart that no longer requires cardiology visits lol) it is welcome news. Wyatt seems to love his cardiologist. He waved, shook hands and was full of smiles the entire 2 hours we were in the office. He didn't even give the tech a hard time when she did his echo 🙌🏻 #nailedit  #myhearthero  #CHDwarrior  #anotheroneinthebooks  #mendedheart  #rockyourscar  #chicksdigscars 
SCARS ARE BEAUTIFUL.//💚 "

My name is Melissa and I'm from Broomall, Pennsylvania. I have been rocking my scars for 20 years! I was diagnosed  with cardiomyopathy when I was 2 1/2 and went into heart failure when I was 7. I had a life saving heart transplant in 1997. In 2011 my heart began to get weak once again and I had a defibrillator placed. I also had my mitral valve replaced. The surgery did not work as planned so in 2015 I went back in to heart failure and was lucky enough to receive my second heart transplant. My new heart has been doing very well since and I look forward to one day soon  meeting my donor's family!" @missayy7 .
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#scarsarebeautiful #scarsarebeautifulproject #openheartsurgery #hearttransplant #organdonation #zipperclub #rockyourscar #chdawareness #1in100 #behindthescars #chicksdigscars #positivebodyimage #stigmafree #childhoodunplugged #selflove #candidchildhood #invisibleillness #chronicillness #congenitalheartdefect #pennsylvania #pennsylvaniaphotographer #portraitphotography #nyc #vancouver #vancity #vancouverphotographer
SCARS ARE BEAUTIFUL.//💚 " My name is Melissa and I'm from Broomall, Pennsylvania. I have been rocking my scars for 20 years! I was diagnosed with cardiomyopathy when I was 2 1/2 and went into heart failure when I was 7. I had a life saving heart transplant in 1997. In 2011 my heart began to get weak once again and I had a defibrillator placed. I also had my mitral valve replaced. The surgery did not work as planned so in 2015 I went back in to heart failure and was lucky enough to receive my second heart transplant. My new heart has been doing very well since and I look forward to one day soon meeting my donor's family!" @missayy7 . . . . . . . #scarsarebeautiful  #scarsarebeautifulproject  #openheartsurgery  #hearttransplant  #organdonation  #zipperclub  #rockyourscar  #chdawareness  #1in100  #behindthescars  #chicksdigscars  #positivebodyimage  #stigmafree  #childhoodunplugged  #selflove  #candidchildhood  #invisibleillness  #chronicillness  #congenitalheartdefect  #pennsylvania  #pennsylvaniaphotographer  #portraitphotography  #nyc  #vancouver  #vancity  #vancouverphotographer 
Morning contemplations with Keegs... "If I only have half a heart, can I still be a whole ninja?" #bwahaha #lovethiskid #mykidisagoober
#nailingthisparentingthing #keegansheart #halfheartwonder #chd #chdwarrior #hlhs #littlewarrior #zipperclub #chicksdigscars #rockyourscar
SCARS ARE BEAUTIFUL.//💚 Meet Stacy Ann Walker from Connecticut and has Aortic Stenosis. However, she did not know she had Rheumatic heart disease until 6 years ago when she was pregnant with her daughter. During her pregnancy she went into heart failure. As a result, her daughter was born premature and Stacy had to have two open heart surgeries; Mitral and tricuspid valve repair in 2012 and Mitral valve replacement in 2016. Now, she is working on an upcoming podcast called The Heart Life and is a major advocate and voice for people getting their hearts tested heart disease, not matter what age a person may be. I couldn't agree with Stacy more. Getting your heart tested for Heart disease is very important,especially if you are a woman and want to have children.  Many may not know this but woman With Heart disease are very high risk for pregnancy and some are never allowed to get pregnant. @the_heart_life .
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#scarsarebeautiful #scarsarebeautifulproject #openheartsurgery #zipperclub #fckchd #rockyourscar #chestscar #wearredorgonaked #1in100 #heartmom #nyc #brooklyn #connecticutlife #connecticut #jamaican #campaignlife #realrolemodel #momlife #rolemodel #brooklynphotography #vancouver #vancity #vancitybuzz #vancitynow #newyorkcity #brooklynphotographer
SCARS ARE BEAUTIFUL.//💚 Meet Stacy Ann Walker from Connecticut and has Aortic Stenosis. However, she did not know she had Rheumatic heart disease until 6 years ago when she was pregnant with her daughter. During her pregnancy she went into heart failure. As a result, her daughter was born premature and Stacy had to have two open heart surgeries; Mitral and tricuspid valve repair in 2012 and Mitral valve replacement in 2016. Now, she is working on an upcoming podcast called The Heart Life and is a major advocate and voice for people getting their hearts tested heart disease, not matter what age a person may be. I couldn't agree with Stacy more. Getting your heart tested for Heart disease is very important,especially if you are a woman and want to have children. Many may not know this but woman With Heart disease are very high risk for pregnancy and some are never allowed to get pregnant. @the_heart_life . . . . . . #scarsarebeautiful  #scarsarebeautifulproject  #openheartsurgery  #zipperclub  #fckchd  #rockyourscar  #chestscar  #wearredorgonaked  #1in100  #heartmom  #nyc  #brooklyn  #connecticutlife  #connecticut  #jamaican  #campaignlife  #realrolemodel  #momlife  #rolemodel  #brooklynphotography  #vancouver  #vancity  #vancitybuzz  #vancitynow  #newyorkcity  #brooklynphotographer 
Happy Heartiversary, Ryder! We are so thankful for the miracle of your life and for your ray-of-sunshine smile and laugh. This world is brighter because you are in it! ❤️ #chd #chdwarrior #beadsofcourage #heartmom #rockyourscar
SCARS ARE BEAUTIFUL.//💚 today I am doing a special feature for SAB... this is Matt. Over the past weekend he participated in the Great North Run in Newcastle, U.K.  He may have came in last place, but he caught the worlds attention and was named the "true winner" that day. Why is Matt so incredible?  Matt Hadden, 28, suffers from terminal bone cancer but still completed the half marathon with his prosthetic leg.  He has gone under intensive chemotherapy and even underwent a leg amputation.  Even with being faced with life's biggest challenges, he doesn't let his spirits get down and makes sure he lives life to the fullest, no matter what. I was more than fortunate to meet this incredible man back in May and photograph him for @scarsarebeautifulproject. He is a true role model and a hero to many!!! @constant_reader_healer .
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#scarsarebeautiful #scarsarebeautifulproject #cancersucks #fckcancer #newcastle #greatnorthrun #realrolemodel #hero #rolemodel #chemotherapy #chicksdigscars #rockyourscar #zipperclub #livelifetothefullest #campaignlife #bonecancer #cancerfight #fightforlife #fckchd #openheartsurgery #loveyourself #loveyourlife #worldwide #uk #london #sixtimesopen #wearredorgonaked @sixtimesopen @the_bhf @themightysite @youngpeople_chronicillnesses
SCARS ARE BEAUTIFUL.//💚 today I am doing a special feature for SAB... this is Matt. Over the past weekend he participated in the Great North Run in Newcastle, U.K. He may have came in last place, but he caught the worlds attention and was named the "true winner" that day. Why is Matt so incredible? Matt Hadden, 28, suffers from terminal bone cancer but still completed the half marathon with his prosthetic leg. He has gone under intensive chemotherapy and even underwent a leg amputation. Even with being faced with life's biggest challenges, he doesn't let his spirits get down and makes sure he lives life to the fullest, no matter what. I was more than fortunate to meet this incredible man back in May and photograph him for @scarsarebeautifulproject. He is a true role model and a hero to many!!! @constant_reader_healer . . . . . . #scarsarebeautiful  #scarsarebeautifulproject  #cancersucks  #fckcancer  #newcastle  #greatnorthrun  #realrolemodel  #hero  #rolemodel  #chemotherapy  #chicksdigscars  #rockyourscar  #zipperclub  #livelifetothefullest  #campaignlife  #bonecancer  #cancerfight  #fightforlife  #fckchd  #openheartsurgery  #loveyourself  #loveyourlife  #worldwide  #uk  #london  #sixtimesopen  #wearredorgonaked  @sixtimesopen @the_bhf @themightysite @youngpeople_chronicillnesses
Thank you so much, Michelle @rebellious_designs_michelle_mc for hosting our Heart Moms paint night! What a fun, relaxing thing to do while we talk about some of the most stressful things in life! Ha! Love you all! Thank you for coming tonight!
#heartwarrior #chdawareness #chd #rockyourscar #heartfamilies #HFCC #heartmamas #heartbabies #countyourblessings #tomorrowisneverpromised #blessed #madeforthislife
I keep telling myself " I won't post anymore today." 😂lies😂 this little girl has the best smile💕 #rockyourscar #hlhs #heartwarrior
Gestern war ich auf der Rheumatologie. Eigentlich eine Routine Kontrolle. Meine Blutwerte sind so schön wie schon lange nicht mehr. Der Lupus verhält sich momentan sehr ruhig. Wäre zu schön, wenn einmal alles gut wäre. Wegen meinen extremen  Rückenschmerzen (trotz Opiat und Schmerzpflaster) wird jetzt eine Knochendichtemessung und ein Röntgen durchgeführt. Verdacht auf Osteoporose. Knochenschwund mit 23? What? Grund dafür könnte die Entzündung im Rückenmark sein, die ich 2013 auf Grund des Lupus hatte. Sehr geil. Aber hey, ich lebe. 💪🏼 Aufgeben gibts nicht, auch wenn ich anscheinend im Körper einer 70 jährigen gefangen bin. 👵🏻 euch einen schönen Start ins WE 🥀 
#me#today#buzzcut#buzzcutgirl#nyx#lupus#rockyourscar
Gestern war ich auf der Rheumatologie. Eigentlich eine Routine Kontrolle. Meine Blutwerte sind so schön wie schon lange nicht mehr. Der Lupus verhält sich momentan sehr ruhig. Wäre zu schön, wenn einmal alles gut wäre. Wegen meinen extremen Rückenschmerzen (trotz Opiat und Schmerzpflaster) wird jetzt eine Knochendichtemessung und ein Röntgen durchgeführt. Verdacht auf Osteoporose. Knochenschwund mit 23? What? Grund dafür könnte die Entzündung im Rückenmark sein, die ich 2013 auf Grund des Lupus hatte. Sehr geil. Aber hey, ich lebe. 💪🏼 Aufgeben gibts nicht, auch wenn ich anscheinend im Körper einer 70 jährigen gefangen bin. 👵🏻 euch einen schönen Start ins WE 🥀 #me #today #buzzcut #buzzcutgirl #nyx #lupus #rockyourscar 
Guess who lost his first tooth yesterday!?! It only just started wiggling and Mr. Do-It-Himself just pulled it right out! His realization that a tooth under the pillow at night equals $1 under the pillow in the morning was one of the cutest reactions. Can't believe my kid is big enough to be losing teeth already! #keegansheart #halfheartwonder #chd #chdwarrior #hlhs #littlewarrior #zipperclub #chicksdigscars #rockyourscar #toothfairy #1sttooth #toothless
Pool day before work #phoenix #poolside #itshot #rockyourscar @gelly3333 where you at? @sweetheart683 #glock #partnersincrime
I'm not crying, you're crying. Juniper had her first day of school today. Today she lived in honor of a little girl who will never have a first day of school but who gave our girl hers. Today she lived for two. Today she reminded all of her doctors, nurses, therapists, friends at Berlin Heart and @donatelifeco, that what they do for a living, matters. The milestones will keep coming and they will keep reminding us to stop and think about a life that almost never was, a life that ended too soon and the selfless parents behind it all. Thank you donor family for giving our family another first with our girl. #becauseofanorgandonor #organdonation
I'm not crying, you're crying. Juniper had her first day of school today. Today she lived in honor of a little girl who will never have a first day of school but who gave our girl hers. Today she lived for two. Today she reminded all of her doctors, nurses, therapists, friends at Berlin Heart and @donatelifeco, that what they do for a living, matters. The milestones will keep coming and they will keep reminding us to stop and think about a life that almost never was, a life that ended too soon and the selfless parents behind it all. Thank you donor family for giving our family another first with our girl. #becauseofanorgandonor  #organdonation 
First week of school is behind us. And I can't believe how well my little boy with half a heart did! 
If you are a new follower then let me introduce you to my "why Doterra." I wrote this last week on my personal account:
This little boy right here is turning 5 AND starting kindergarten! If you look up HLHS, survival rates by the age of 5 are wretched. In fact, I sobbed until I couldn't breath when I read the statistic just a few short days after he survived his first open heart surgery. We barely had time to catch our breath and feel relief that he survived.  We hadn't even considered yet, what  rest of his life would look like.... and the reality was earth shattering. His first year was sad, slow, with only little morsels of hope. But then one day he started to fight, we started to see the fire burning in him. We started to see his joy. And he took off- in his own time, in his own way, and with definite style, he has fought to be here. 
I didn't think he'd be here today. I really didn't. But now I look at him and think "how could this kid not survive?" This little boy knit together in my womb by a God who loves and knows him more intimately than I ever will. How precious the heartache has become to me! How thankful I am for every day of it! How good is our God! 
Bennet's cardiologist, the man who walked into a frantic, panicked NICU when Bennet was 1 day old and calmly diagnosed my son while I cried on the floor, called me recently to say this "well christie, we have certainly come a long way from that moment at the hospital 5 years ago. Congratulations mama, let him fly" 
And that's what I pray I will do. Let him fly. I just might need to be reminded every now and then #saundertopia #bennyray #hlhs #heartwarrior#chd #chdwarrior #rockyourscar #chdawareness
First week of school is behind us. And I can't believe how well my little boy with half a heart did! If you are a new follower then let me introduce you to my "why Doterra." I wrote this last week on my personal account: This little boy right here is turning 5 AND starting kindergarten! If you look up HLHS, survival rates by the age of 5 are wretched. In fact, I sobbed until I couldn't breath when I read the statistic just a few short days after he survived his first open heart surgery. We barely had time to catch our breath and feel relief that he survived. We hadn't even considered yet, what rest of his life would look like.... and the reality was earth shattering. His first year was sad, slow, with only little morsels of hope. But then one day he started to fight, we started to see the fire burning in him. We started to see his joy. And he took off- in his own time, in his own way, and with definite style, he has fought to be here. I didn't think he'd be here today. I really didn't. But now I look at him and think "how could this kid not survive?" This little boy knit together in my womb by a God who loves and knows him more intimately than I ever will. How precious the heartache has become to me! How thankful I am for every day of it! How good is our God! Bennet's cardiologist, the man who walked into a frantic, panicked NICU when Bennet was 1 day old and calmly diagnosed my son while I cried on the floor, called me recently to say this "well christie, we have certainly come a long way from that moment at the hospital 5 years ago. Congratulations mama, let him fly" And that's what I pray I will do. Let him fly. I just might need to be reminded every now and then #saundertopia  #bennyray  #hlhs  #heartwarrior #chd  #chdwarrior  #rockyourscar  #chdawareness 
#tbt to lil 5 year old sick me. Spending my 5th birthday in the hospital as you can see by the cake, one of the 31 days spent in there, hating life and hating people 🙆 I really didn't like people as a child 😂 You can just see in my face how sick I truly was and the fact that I'm so chubby faced while white as a ghost 😫  #kidneytransplant #organdonation #organtransplantstory #isurvived #kidneyfailure #organfailure #happytobealive
Believe in yourself a little more. ✨

#buzzcut#buzzcutgirl#smile#happy#rockyourscar#lipstick#buzzcutfeed
Wenn du einen Menschen findest, der dich zum Lachen bringt, obwohl das Leben dir gerade keinen Grund dazu gibt. Der dich bedingungslos liebt, auch, wenn du es oft nicht verdient hast. Der dich deine Schmerzen für einen Moment vergessen lässt und dir glaubwürdig versichert, dass eines Tages alles wieder gut werden wird. Jemanden, der dich nicht auf deine Krankheit oder Fehler reduziert, sondern dich normal behandelt, dann mach es wie ich & behalte ihn 🖤🥀 #love#married#buzzcut#buzzcutgirl#smile#potd#sunglasses#rockyourscar#buzzcutfeed
Wenn du einen Menschen findest, der dich zum Lachen bringt, obwohl das Leben dir gerade keinen Grund dazu gibt. Der dich bedingungslos liebt, auch, wenn du es oft nicht verdient hast. Der dich deine Schmerzen für einen Moment vergessen lässt und dir glaubwürdig versichert, dass eines Tages alles wieder gut werden wird. Jemanden, der dich nicht auf deine Krankheit oder Fehler reduziert, sondern dich normal behandelt, dann mach es wie ich & behalte ihn 🖤🥀 #love #married #buzzcut #buzzcutgirl #smile #potd #sunglasses #rockyourscar #buzzcutfeed 
Why does my five month old look like a toddler?? #itsprobablythehair #shirleyanne #shirleysgrandadventure
Mommy and Davey are hitting the road, via train, for a little girls trip to see Hamma @dlkhammill, Hammpa @hammer340, auntie Fifi @shesha92592, auntie Alexa @alexamilazzo, and Uncle Mike @mrmilazzo this weekend!! She is so excited to see her family and to go to the beach! She is loving every minute of this trip! Such a good travel buddy!
 #dailydoseofdavey #ddd #heartsfordaveyjean #mommysgirl #bestillmyheart #sheamazesmeeveryday #pleasestaylittle #nevergrowup #movingmountains #itsthelittlethings #blowsmeaway #sweetgirl #theappledoesntfallfarfromthetree #mymiraclegirl #mywhy #myheart #myworld #myeverything  #heartmom #chdawareness #rockyourscar #heartwarrior #22q #tof #apv #asl #typicallyatypical #differentnotless #perfectlyimperfect 
#dontlettheworlddecidewhatsbeautiful
Mommy and Davey are hitting the road, via train, for a little girls trip to see Hamma @dlkhammill, Hammpa @hammer340, auntie Fifi @shesha92592, auntie Alexa @alexamilazzo, and Uncle Mike @mrmilazzo this weekend!! She is so excited to see her family and to go to the beach! She is loving every minute of this trip! Such a good travel buddy! #dailydoseofdavey  #ddd  #heartsfordaveyjean  #mommysgirl  #bestillmyheart  #sheamazesmeeveryday  #pleasestaylittle  #nevergrowup  #movingmountains  #itsthelittlethings  #blowsmeaway  #sweetgirl  #theappledoesntfallfarfromthetree  #mymiraclegirl  #mywhy  #myheart  #myworld  #myeverything  #heartmom  #chdawareness  #rockyourscar  #heartwarrior  #22q  #tof  #apv  #asl  #typicallyatypical  #differentnotless  #perfectlyimperfect  #dontlettheworlddecidewhatsbeautiful 
This is the "Mom, can you just leave me at school and go to work now?" look... #lovethiskid #keegansheart #halfheartwonder #chd #chdwarrior #hlhs #littlewarrior #zipperclub #chicksdigscars #rockyourscar
#FirstDayOfKindergarten This kid is so excited to go to school today! No tears were shed, and he couldn't wait for Mommy and Daddy to leave! #mybigKindergartener #keegansheart #halfheartwonder #chd #chdwarrior #hlhs #littlewarrior #zipperclub #chicksdigscars #rockyourscar
"Look at my foot, mom!"
"Look at my foot, mom!"
So glad I was able to come out and visit this special little heart Warrior today! Dixie Doo has rocked her third open heart surgery and is well on her way to going home! She got a peel and stick mermaid puzzle set and a visit from a very special therapy dog named Cooper today! I am amazed every day at how strong our little babies are! Count your blessings and hug your little ones tight tonight. #heartwarrior #chdawareness #chd #rockyourscar #heartfamilies #HFCC #heartmamas #heartbabies #countyourblessings #tomorrowisneverpromised #blessed #madeforthislife
So glad I was able to come out and visit this special little heart Warrior today! Dixie Doo has rocked her third open heart surgery and is well on her way to going home! She got a peel and stick mermaid puzzle set and a visit from a very special therapy dog named Cooper today! I am amazed every day at how strong our little babies are! Count your blessings and hug your little ones tight tonight. #heartwarrior  #chdawareness  #chd  #rockyourscar  #heartfamilies  #HFCC  #heartmamas  #heartbabies  #countyourblessings  #tomorrowisneverpromised  #blessed  #madeforthislife 
Sometimes, when Mason is asleep i caress his scar, lay my head on his chest and listen to his heartbeat. Each heartbeat is like music to my ears...and proof that miracles do happen....
My BEAUTIFULLY FLAWED child. I want you to embrace your scars and never be ashamed. When you look in the mirror, have them serve as a reminder, that you're a FIGHTER a WARRIOR a SURVIVOR! 
#babyboy#1in100#survivor#chdsurvivor#chd#chdwarrior#fighter#warrior#heartbaby#heartmom#openheartsurgery#tgababy#andymasonsheart#zipperclub#scarsarebeautiful#rockyourscar#beautiful#flawed#miraclebaby#mommysboy#blessed#godisgood#loveyoutothemoonandback
Sometimes, when Mason is asleep i caress his scar, lay my head on his chest and listen to his heartbeat. Each heartbeat is like music to my ears...and proof that miracles do happen.... My BEAUTIFULLY FLAWED child. I want you to embrace your scars and never be ashamed. When you look in the mirror, have them serve as a reminder, that you're a FIGHTER a WARRIOR a SURVIVOR! #babyboy #1in100 #survivor #chdsurvivor #chd #chdwarrior #fighter #warrior #heartbaby #heartmom #openheartsurgery #tgababy #andymasonsheart #zipperclub #scarsarebeautiful #rockyourscar #beautiful #flawed #miraclebaby #mommysboy #blessed #godisgood #loveyoutothemoonandback 
Little Shirley is being extra cute today!
Little Shirley is being extra cute today!
Sunday morning snuggles with my mean wild child.. whom wants no part of snuggling with me🤣 #amelia #mylittlelove #rockyourscar #chdwarrior
Selamat siang teman teman Little Heart Community 🌞. Kita kenalan yuk sama tiga warrior LHC yang sangat aktif dan lincah ini. Dari sebelah kiri namanya Stevano dan yang ditengah namanya Justin, mereka berdua punya super heart Truncus Arteriosus type 2.  Dan yang disebelah kanan adalah Russell dengan super heart Tetralogy of Fallot. Siapa bilang anak PJB mudah lelah? Jika bertemu ketiga warrior ini merekalah yang membuat Mamanya lelah karena tidak akan berhenti bermain dan bergerak 😅. Ayo lawan PJB seperti ketiga warrior ini. Siapa bilang anak PJB tidak bisa mempunyai kualitas hidup yang baik ?! #littleheartcommunity #truncusarteriosus #tetralogyoffallot #penyakitjantungbawaan #congenitalheartdefect #pjb #chd #rockyourscar #chdawareness #lhc #heartwarrior
Selamat siang teman teman Little Heart Community 🌞. Kita kenalan yuk sama tiga warrior LHC yang sangat aktif dan lincah ini. Dari sebelah kiri namanya Stevano dan yang ditengah namanya Justin, mereka berdua punya super heart Truncus Arteriosus type 2. Dan yang disebelah kanan adalah Russell dengan super heart Tetralogy of Fallot. Siapa bilang anak PJB mudah lelah? Jika bertemu ketiga warrior ini merekalah yang membuat Mamanya lelah karena tidak akan berhenti bermain dan bergerak 😅. Ayo lawan PJB seperti ketiga warrior ini. Siapa bilang anak PJB tidak bisa mempunyai kualitas hidup yang baik ?! #littleheartcommunity  #truncusarteriosus  #tetralogyoffallot  #penyakitjantungbawaan  #congenitalheartdefect  #pjb  #chd  #rockyourscar  #chdawareness  #lhc  #heartwarrior 
Took Davey to Rollertown for the first time last night. She had so much fun. She preferred to watxh from the sidelines and dance and cheer everyone on. Shes such a natural cheerleader. Her dance moves are priceless. This girl just makes me smile. More pictures to follow... #dailydoseofdavey #ddd #heartsfordaveyjean #mommysgirl #bestillmyheart #sheamazesmeeveryday #pleasestaylittle #nevergrowup #movingmountains #itsthelittlethings #blowsmeaway #mymiraclegirl #mywhy #myheart #myworld #myeverything  #heartmom #chdawareness #rockyourscar #heartwarrior #22q #tof #apv #asl #typicallyatypical #differentnotless #perfectlyimperfect 
#dontlettheworlddecidewhatsbeautiful
Took Davey to Rollertown for the first time last night. She had so much fun. She preferred to watxh from the sidelines and dance and cheer everyone on. Shes such a natural cheerleader. Her dance moves are priceless. This girl just makes me smile. More pictures to follow... #dailydoseofdavey  #ddd  #heartsfordaveyjean  #mommysgirl  #bestillmyheart  #sheamazesmeeveryday  #pleasestaylittle  #nevergrowup  #movingmountains  #itsthelittlethings  #blowsmeaway  #mymiraclegirl  #mywhy  #myheart  #myworld  #myeverything  #heartmom  #chdawareness  #rockyourscar  #heartwarrior  #22q  #tof  #apv  #asl  #typicallyatypical  #differentnotless  #perfectlyimperfect  #dontlettheworlddecidewhatsbeautiful 
This happy girl is five months old (+ three days)! She's getting more vocal everyday! Her new thing is a giddy little squeal that I can never seem to catch on camera! Her left hand is still her most interesting toy (😂 she likes it better than anything else), and she's still trying to figure out the whole rolling thing. We have a cardiology appointment, with an echo, coming up this Friday. We're hoping for good news and less medications! Until then, we'll just enjoy all her smiles and cuddles. ❤️🍓
This happy girl is five months old (+ three days)! She's getting more vocal everyday! Her new thing is a giddy little squeal that I can never seem to catch on camera! Her left hand is still her most interesting toy (😂 she likes it better than anything else), and she's still trying to figure out the whole rolling thing. We have a cardiology appointment, with an echo, coming up this Friday. We're hoping for good news and less medications! Until then, we'll just enjoy all her smiles and cuddles. ❤️🍓
Davey found this towel that was made for her dad and I, when she was first born and diagnosed with 22q and TOF w/APV. Itwas such a scary time in our lives and we were so blessed to be surrounded by such amazing, loving and supportive friends. She insisted on taking it to school today just like she insisted on wearing her tall, black boots in 100° weather. This girl just cracks me up.  #dailydoseofdavey #ddd #heartsfordaveyjean #mommysgirl #bestillmyheart #sheamazesmeeveryday #pleasestaylittle #nevergrowup #movingmountains #itsthelittlethings #blowsmeaway #mymiraclegirl #mywhy #myheart #myworld #myeverything  #heartmom #chdawareness #rockyourscar #heartwarrior #22q #tof #apv #asl #typicallyatypical #differentnotless #perfectlyimperfect 
#dontlettheworlddecidewhatsbeautiful
Davey found this towel that was made for her dad and I, when she was first born and diagnosed with 22q and TOF w/APV. Itwas such a scary time in our lives and we were so blessed to be surrounded by such amazing, loving and supportive friends. She insisted on taking it to school today just like she insisted on wearing her tall, black boots in 100° weather. This girl just cracks me up. #dailydoseofdavey  #ddd  #heartsfordaveyjean  #mommysgirl  #bestillmyheart  #sheamazesmeeveryday  #pleasestaylittle  #nevergrowup  #movingmountains  #itsthelittlethings  #blowsmeaway  #mymiraclegirl  #mywhy  #myheart  #myworld  #myeverything  #heartmom  #chdawareness  #rockyourscar  #heartwarrior  #22q  #tof  #apv  #asl  #typicallyatypical  #differentnotless  #perfectlyimperfect  #dontlettheworlddecidewhatsbeautiful 
Year, also I have a not so beautyfull big scar. But I'm still alive and fight on. (well, I have no choice...) I WILL ROCK MY SCAR!!!
#chd #chdwarrior #congentalheartdefect #tetralogyoffallot #heartfighter #pn #eisenmengerssyndrome #fighter #rockyourscar #lovelife #liveeveryday #liveeverydayatyourbest #redhead #chdawareness #heartbeat #heart
Al and I are taking part in the Great North Run (1/2 marathon, eek!) for the Children's Heart Unit Foundation this September 10th. A charity we hold very close to our hearts. I've added the link in my bio for anyone who would like to sponsor us and a huge thank you to all who have already kindly donated, it means the world to us. I can't put into words the gratitude that I have for the people that helped to save our Marin's life and I hope that in some small way, we can help other heart families have the best possible care for their little warriors ❤️ thank you for reading and for any support you can give! #rockyourscar
Al and I are taking part in the Great North Run (1/2 marathon, eek!) for the Children's Heart Unit Foundation this September 10th. A charity we hold very close to our hearts. I've added the link in my bio for anyone who would like to sponsor us and a huge thank you to all who have already kindly donated, it means the world to us. I can't put into words the gratitude that I have for the people that helped to save our Marin's life and I hope that in some small way, we can help other heart families have the best possible care for their little warriors ❤️ thank you for reading and for any support you can give! #rockyourscar 
Please pray that sweet Lucy would recover and heal quickly from the open heart surgery she had this morning ❤️#heartwarrior
Please pray that sweet Lucy would recover and heal quickly from the open heart surgery she had this morning ❤️#heartwarrior 
We encourage Preston to Rock his scare and never be ashamed of it! Scars are stories of things that tried to break us but didn't stand a chance. We were at a graduation party recently and  my moms Aunt Kay who hasn't seen P in awhile said , " let me see your scar. That's the most beautiful scar there ever was!" Of course he smiled and went about playing. But it stopped me in my tracks because she was right- it is the most beautiful scar because he has it and is thriving with it !For someone to acknowledge it means the world to this heart family! Embrace it, rock it, tell your story~ you are a miracle and others will draw strength from your heart journey! #chd #alcapawarrior #prestonstrong #heartfamily #lifeisgood #rockyourscar
We encourage Preston to Rock his scare and never be ashamed of it! Scars are stories of things that tried to break us but didn't stand a chance. We were at a graduation party recently and my moms Aunt Kay who hasn't seen P in awhile said , " let me see your scar. That's the most beautiful scar there ever was!" Of course he smiled and went about playing. But it stopped me in my tracks because she was right- it is the most beautiful scar because he has it and is thriving with it !For someone to acknowledge it means the world to this heart family! Embrace it, rock it, tell your story~ you are a miracle and others will draw strength from your heart journey! #chd  #alcapawarrior  #prestonstrong  #heartfamily  #lifeisgood  #rockyourscar 
Sunday Morning snuggles with my main man....and bun-bun🐇 #lazysunday #rockyourscar
Repost from @awarenessadventurers @TopRankRepost #TopRankRepost Realness. That's a picture of me in #1982 and me now. I have a CHD 👶🏻❤️. As an adult I am classified as #ACHD 👩🏻❤️. I was born with complete congenital heart block💔, had heart failure and 5 surgeries, 4 pacemakers, and 1 defibrillator. I've fought with a hospital 🏥and a state department of health 🏛 about a botched surgery. My family👩‍👧 and I participated in a clinical trial for rare CHD and, as a graduate student🎓, I got to work on that trial. I've been though college and graduate school 📚🎓and many jobs💰💳. I am not a warrior or a champion or an inspiration because I refuse to portray the life that I walk as a story or as entertainment. #Babies are the face of CHD but they do become adults who will be best served by receiving preparation for their adult lives with unique challenges and multiple health expenses 💵that affect their quality of life while adding up quickly💵💵💵. Parents like @jimmykimmel that are new to CHD jump from crisis to crisis which can make planning for the future seem far fetched and transitioning the child from pediatrics to adult medicine challenging. Considering the concerns of adulthood DURING childhood can also seem far fetched to many people but it must be done and should not be taken lightly. Believe me because I've already lived it. DM me with questions. @hopeful_hearts_foundation #1in100 #rockyourscar #survivor #chd #chdawareness #qualityoflife #qol #heart #humanheart #anatomy #brokenheart #publichealth #awareness #staywoke #realness #onedayatatime
Repost from @awarenessadventurers @TopRankRepost #TopRankRepost  Realness. That's a picture of me in #1982  and me now. I have a CHD 👶🏻❤️. As an adult I am classified as #ACHD  👩🏻❤️. I was born with complete congenital heart block💔, had heart failure and 5 surgeries, 4 pacemakers, and 1 defibrillator. I've fought with a hospital 🏥and a state department of health 🏛 about a botched surgery. My family👩‍👧 and I participated in a clinical trial for rare CHD and, as a graduate student🎓, I got to work on that trial. I've been though college and graduate school 📚🎓and many jobs💰💳. I am not a warrior or a champion or an inspiration because I refuse to portray the life that I walk as a story or as entertainment. #Babies  are the face of CHD but they do become adults who will be best served by receiving preparation for their adult lives with unique challenges and multiple health expenses 💵that affect their quality of life while adding up quickly💵💵💵. Parents like @jimmykimmel that are new to CHD jump from crisis to crisis which can make planning for the future seem far fetched and transitioning the child from pediatrics to adult medicine challenging. Considering the concerns of adulthood DURING childhood can also seem far fetched to many people but it must be done and should not be taken lightly. Believe me because I've already lived it. DM me with questions. @hopeful_hearts_foundation #1in100  #rockyourscar  #survivor  #chd  #chdawareness  #qualityoflife  #qol  #heart  #humanheart  #anatomy  #brokenheart  #publichealth  #awareness  #staywoke  #realness  #onedayatatime 
Realness. That's a picture of me in #1982 and me now. I have a CHD 👶🏻❤️. As an adult I am classified as #ACHD 👩🏻❤️. I was born with complete congenital heart block💔, had heart failure and 5 surgeries, 4 pacemakers, and 1 defibrillator. I've fought with a hospital 🏥and a state department of health 🏛 about a botched surgery. My family👩‍👧 and I participated in a clinical trial for rare CHD and, as a graduate student🎓, I got to work on that trial. I've been though college and graduate school 📚🎓and many jobs💰💳. I am not a warrior or a champion or an inspiration because I refuse to portray the life that I walk as a story or as entertainment. #Babies are the face of CHD but they do become adults who will be best served by receiving preparation for their adult lives with unique challenges and multiple health expenses 💵that affect their quality of life while adding up quickly💵💵💵. Parents like @jimmykimmel that are new to CHD jump from crisis to crisis which can make planning for the future seem far fetched and transitioning the child from pediatrics to adult medicine challenging. Considering the concerns of adulthood DURING childhood can also seem far fetched to many people but it must be done and should not be taken lightly. Believe me because I've already lived it. DM me with questions. @hopeful_hearts_foundation #1in100 #rockyourscar #survivor #chd #chdawareness #qualityoflife #qol #heart #humanheart #anatomy #brokenheart #publichealth #awareness #staywoke #realness #onedayatatime
Realness. That's a picture of me in #1982  and me now. I have a CHD 👶🏻❤️. As an adult I am classified as #ACHD  👩🏻❤️. I was born with complete congenital heart block💔, had heart failure and 5 surgeries, 4 pacemakers, and 1 defibrillator. I've fought with a hospital 🏥and a state department of health 🏛 about a botched surgery. My family👩‍👧 and I participated in a clinical trial for rare CHD and, as a graduate student🎓, I got to work on that trial. I've been though college and graduate school 📚🎓and many jobs💰💳. I am not a warrior or a champion or an inspiration because I refuse to portray the life that I walk as a story or as entertainment. #Babies  are the face of CHD but they do become adults who will be best served by receiving preparation for their adult lives with unique challenges and multiple health expenses 💵that affect their quality of life while adding up quickly💵💵💵. Parents like @jimmykimmel that are new to CHD jump from crisis to crisis which can make planning for the future seem far fetched and transitioning the child from pediatrics to adult medicine challenging. Considering the concerns of adulthood DURING childhood can also seem far fetched to many people but it must be done and should not be taken lightly. Believe me because I've already lived it. DM me with questions. @hopeful_hearts_foundation #1in100  #rockyourscar  #survivor  #chd  #chdawareness  #qualityoflife  #qol  #heart  #humanheart  #anatomy  #brokenheart  #publichealth  #awareness  #staywoke  #realness  #onedayatatime 
Repost from @bri_bravo @TopRankRepost #TopRankRepost 22 year old college grad with Hypo-Plastic Left Heart Syndrome + pulmonary atresia + heterotaxy. Four major open-heart surgeries + a pacemaker ❤️💪🏼 #HLHS #CHDawareness #1in100 #HeartOfAWarrior #RockYourScar @hopeful_hearts_foundation