Chdawareness Photos & Videos on Instagram

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heart_momming_me

The best smiles are captured when he’s at the park! 🌞 . Hello to new followers (and to those who have been hanging around for a bit)! I have been feeling a little lost lately in the inspiration department - so in a weird sense I have been trying to press the reset button on some of my creative ventures... easier said then done. . One thing I want to do is to introduce myself properly for now. I feel in some way this will initiate a more purposeful direction with this account. 🤔 . My name is Marissa and I’m a wife to a great, supportive partner and a mom to a little boy (almost 10 months old now!) named Finn. Finn has been a total game changer. He is the light of my life and keeps me on my toes! He was born with d - TGA (a congenital heart defect where the pulmonary and aortic valve are switched) and had open heart surgery at a little under 2 weeks old. He is doing great now! His recovery amazes me and I know he has a huge, amazing life in front of him. #chdawareness . Finn is definitely a big part of this IG account...the pictures don’t lie! He really is a photogenic little guy. But I also want this space to reflect my creative side that often gets pushed to the side. Mom life is a huge chunk of me and I love it. I also love crafts, illustrating and art. I hope I can open up this account to reflect a little more of that side as well. I have always said - the line separating my mom life and my art life is blurry and unclear, each one influencing the other in some way. I would not change it! ⭐️ . Please check out my #etsy store heartmomming.etsy.com and follow @heart_momming_shop for store updates and product features. Stay tuned! . #newmom #heartmom #babyboy #chd #tga #heartwarrior #momlife #creativeinspiration #illustrator #art #heartmomming #handmade

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_oisin.g

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albieslittlebrokenheart

💔 F O N T A N I V E R S A R Y 💔 Its only when you look back you realise truly how far he has come 💪 He has been thrown more challenges and curved balls that most adults experience in their entire lifetime .... 3 Open Heart Surgeries ...3 Cardiac Catherisations & another imminent... Never ending Appointments... Countless Bloods... Lifetime medication... Physiotherapy... Occupational Therapy... Speech & Language therapy... an Autism & Global Development Delay diagnosis and yet...he has smiled through it all 😍 To say we are Proud doesnt even cut it ~ he puts everything in our lives into perspective and we are so honoured to be his parents👨‍👩‍👧‍👦 Love & Appreciation to the AMAZING team at @cmrf_crumlin that made it all happen ❤ On the First anniversary of his Fontan we celebrate a year of many "firsts" for Albie ❤ Half a heart ~ Not half a life ❤ #albieslittlebrokenheart #chd #chdawareness #hrhs #chdwarrior #zipperclub #hypoplasticrightheart #openheartsurgery #postfontan #singleventricle #albiesautism #autism #gdd #superman #superalbie #crumlinsheroes

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abigailandthefuture

So we had Rohan’s cardiac check up yesterday and whilst not much has changed things are definitely heading in the direction of some sort of surgery I think. They picked up on another area of concern last year and have just been watching it, and it is slowly getting worse. Nothing at the moment is life threatening or urgent, but will need repairing at some point. But they said yesterday that they need to do a more detailed scan for which he’ll need to be sedated for, as it’s so hard to get him to be still and tolerate having an echocardiogram, which is fair enough, but it’s just another thing. I know it’s just a sedation, but it’s not as easy as just popping in for our usual checks (I mean they’re not exactly easy, but they’re our “normal”) and I feel like I’m able to manage them. But having any extra medical procedures are always extra things to worry about. I’m of course also worried about what they’ll find and ultimately decide. I know we can’t avoid heart surgery forever, but it’s always been an ‘at some point’ thing and not a possibility of being an actually ‘soon’ thing. I also really struggle to take in all what they say, especially when I’m at the clinics on my own (rob couldn’t be there with me this time) and forget vital bits of information and only think of questions later on in the day. So once we receive the report from today I’m going to try and write about it in more detail, mainly for me so I can order all my thoughts around it. But for now, normal life resumes. . . . #chdawareness #chdwarrior #medicalmama #heartbaby #honestlymothering #simplymamahood #momentsinmotherhood #myhonestmotherhood #parenthood_unveiled #findingthelightwitherinhensley #ourwhimsicaldays #littlefamiliesofig #standstillmychild #acupofmotherhood #littleandbrave #thingsiwanttoremember #littlefierceones #mytinymoments #honestmotherhood #thesincerestoryteller

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boathouse.in

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careers_club

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zipper.kid

Supporters received their shirts. Thank you for supporting the CHD community. #zipperkid #chdwarrior #chdawareness #heartwarrior Please tag us or send us a photo of you and your shirts. We will post it on our IG page.

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the.life.of.lameeha

The date, 16 August 2017. The day after Lameeha's Aortapexy operation. She is still mostly sedated. Has a drip in her left hand, leads on her chest to monitor her vitals, central line connected to her jugular vein in the neck, this is for all medication. We have met with her Surgeon and Pulmonologist who both conclude that the operation went well, however the result of her operation may take a while to show. Her pulmonary vessels which have been compressed, may take a while to inflate back up again. They both are hoping for this although theres no telling how long it may take or even if this will happen at all. We hope❤ We pray❤ We have faith ❤ . . #CHDLameeha #livingwithlameeha #livingwithCHD #CHDsurvivor #CHDwarriorprincess #1in100 #ZIPPERclubmember #scarsarebeautiful #heartwarrior #gtubebaby #CHDawareness #withawarenessthereisgreaterresearch #withawarenesscomeschange #prayforLameeha

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lenorekhart

Many of you know Zoe, while many others have seen me post about her, her heart surgery at 11 days old, or the book her mom wrote and published because of their experience with Zoe’s congenital heart defect. Such defects affect more people than we realize. Let’s help them reach their goal to get this beautiful book in the hands of those that need to read it...by this Monday, Zoe’s 7th birthday! #heartsongbook #chdawareness Read more and donate here: https://www.youcaring.com/heartsongforchd

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sickexhibition

#Repost @scarsarebeautifulproject SCARS ARE BEAUTIFUL.//💚 “This beautiful sign was made by my daughter Noelle. Although I was only 4 when I had my chest split open and had my tiny heart repaired, to this day it’s still my strongest childhood memory. Over the last 3 yrs I’ve done my best to raise awareness on CHD, congenital heart disease, and how I get on with it. I’ve come in contact with the most amazing heart warriors and would like to make a shoutout to @brigittazatko for her inspiring work on @scarsarebeautiful connecting us worldwide and destroy the stigma behind open heart surgery scars ❤️ “ @jensjexmark . . #scarsarebeautiful #scarsarebeautifulproject #openheartsurgery #chdawareness #chdwarrior #zipperclub #sweden #1in100 #invisibleillness #chronicillness #athlete # #rolemodel #invisibleillnessawareness

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janalareephoto

Take 1:🙈 Take 2:👊 Hey, Friends! My husband and I have started a new project —> @theserraofamily. We wanted a more public space to share our home and family life, and especially share how Congenital Heart Disease affects us daily. We’ve become apart of a beautiful community through our son’s challenges and we want to continue to spread awareness, understanding, and love. Come join us! We’d love to see you there!

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theboymamalife

Tyler’s cardiologists check up went really well today❤️❤️ #chdawareness #tetralogyoffallot

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evonalove25

In 2016, Latoya Knight created an online blog to document life after deciding to keep her baby. She had no clue that so many women would identify with her situation. When the father of your child decides he doesn't want to be involved, how do you move forward?  How do you cope when you find out your baby is diagnosed with a congenital heart defect? In this book, you'll be taken along the before, during and after pregnancy journey. Read this book and be a witness to the miracles. DIRECT LINK TO PURCHASE BOOK IN BIO ❤️

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beyond_bethany_building

⠀⠀⠀⠀⠀⠀⠀⠀⠀ It’s about an INSIDE-out transformation. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #faithandfitness #heartworkout #strongfoundation #insideoutfitness #insideoutbeauty #insideoutfitness #buildyou #heart #heartdisease #PTstudent #piyo #piyoflip #gradschoollife #pushyourheart #dancer #danceforlife #faith #heartwarrior #chdawareness #heartdiseasesurvivor #cardiacathlete #strongisbeautiful #boldandbeautiful #crunchYork #BeyondBethanyBuilding #BBBuilding

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photosesh

🎈6th Annual 5K Birthday Bash for Hayden's Heart Foundation 🎈 . . Check out ALL the photos by going to photosesh.com under featured events. . . Hayden's Heart is a non-profit foundation to honor Hayden Jeter Dorsett and raise awareness to CHD (Congenital Heart Defect). This run was held to support a wonderful cause as proceeds benefit Sawyer Hines & Family while also paying tribute to Hayden's Birthday. PhotoSesh was honored to play a small role in helping this amazing organization led by Rob Dorsett + Ady Smith Dorsett. . . . 📸 (PhotoSesh credits go to Marc Gersh and Sean Jamar Rhinehart) 📸 . . To contribute or participate in upcoming events, please visit haydensheart.org . . Photography Sponsored by BCB Community Bank.

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chw_nashville

#FundraisingFriday update! We are at 16% of our goal!! Let’s keep that percentage rising, Nashville! Together, we #Walk4CHD and raise funds to #FightCHD! ❤️ #chdawareness #congenitalheartwalk #nashville #musiccity #acha #chf #middletennessee #fundraising

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hayden_and_rilynn

Always making sure Hayden is okay. Hayden is finally ready to have her scan to see what (if) is going on with her lungs. Chronic lung disease covers a variety of minor issues. Once we figure out what’s going on inside we can make a clear plan on how to help her grow as much as possible. #chdawareness #zipperclubmember #HaydensHeart #pulmlife

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prayersforkaspian

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tiffany72812

"Hmmm.... what can I get into with out this tube?" So happy to see his sweet face! #tinyheartwarrior #lilboo #eliphant #CHDawareness #novent #watchoutworld

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thislittlelife1

Happy 9 month birthday my sunshine!! Little boy you are getting oh so big! You are such a fighter! These last few months have been hard on all of us, but you get through it with a smile on your face! You may have not yet conquered CHD fully but you sure are conquering it with that smile and your strength to get through anything put in your path! You had a very very special 9 month celebration today(which you all we soon see in the next few weeks!🤐) We couldn’t be more proud of you and the way you have been such an inspiration not only to us but so many that hear your story and see that infectious smile! I am so happy that on this day 9 months ago that you came into my life and completely took us by storm! That day perfection was born! Side note** whoever sent us this onesie please contact me!!

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brightforbrett

#Repost @w.o.b.h with @get_repost ・・・ Isaiah 41:10 10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. #1in100 #CHD #CHDawareness #zipper #organdonation #Organdonationawareness #becauseyousaidyes #worldofbrokenhearts #wobh

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amberdfox

Being their mama is the absolute best ❤️

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lisas_sandwriting

I absolutely love unique, meaningful words, art & friends! This beautiful painted rock arrived from California from my friend Mari at @rocksforryan . She started painting them as a way to educate others about cardiac disease ❤💜 Mari's son has passed away, but his life on Earth continues to touch so many 💜 Thank you, Mari x

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meeteverlyjo

If reuniting with your husband after 3 weeks feels this good, I can’t imagine the reunion we will have with Everly one day!

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kristinsheavenlydrops

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emlfoundation

This is our amazing @celieob who chaired our TEAM FRANNIE. Most importantly, she’s Frannie’s mom. She honored Frannie so beautifully and used her experience of running Boston last year to help our team cross the finish line. Celie and her husband Pat have been awesome supports to the team and the foundation. Plus they are just so much fun to spend time with:-) _ In less than a month Celie will have her fourth baby. Baby Mary we can’t wait to meet you! Thank you Celie for all you put into our team. You are the best! #werunforthem

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caroline_ashley22

Love this perfect face so much ❤️💕🦈 #hlhsbaby #postglenn #chdawareness #heartwarrior #beautifulbaby #thoselipsthough #💋💋

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pieceloveandstitches

@samcro.tw and I got to go meet the newest member of our little family today. She has a fight ahead of her but she’s a strong little warrior already! #hlhs #chdawareness #firstgranddaughter

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jessieb412

Let's do this 💚 Jamesons Army #chdawareness #mtwashington #gala #saksfifthavenue

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theohhf

SO proud of my girl— hard to believe that she was nervous for her part of the presentation today ☀️ Here’s a snippet... #chd #chdawareness #spreadlove #theohhf #makeadifference

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theohhf

And my audience today! By my side, my little CHD advocate and ☀️ girl 💖 #chdawareness #spreadlove #theohhf #heartwarrior

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chdjourney

We have a date & venue for the gala!! This is probably my biggest achievement yet and im so so happy to be in a position to raise money for these amazing charities. If you’d like to come, keep an eye on the website for tickets: www.theredsockgala.co.uk If you'd like to donate, but can't make the gala you can do so on our page at www.gofundme.com/RedSockGala ❤️ (link in bio!) . . . #heart #heartsurgery #charity #charitygala #cardiac #cardio #chd #chdawareness #heartattack #heartbeat #life #scar #openheartsurgery #cambridge

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mommys_little_heart_warrior

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prayersforkaspian

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w.o.b.h

Isaiah 41:10 10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. #1in100 #CHD #CHDawareness #zipper #organdonation #Organdonationawareness #becauseyousaidyes #worldofbrokenhearts #wobh

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ourheartsroc

Our first IG post, welcome!! If you’re here, you’ve probably already seen our flyer, but here’s the details: May 16th from 6-8pm, we’re keeping the office open late. Stop by and meet some other teens and young adults who have congenital heart disease, enjoy some food, and see what it’s all about - looking forward to seeing many of you there!! Send a DM or give us a call if you have questions! #chd #chdawareness

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fleecie84

Today was rough. Today was a day I’ve been dreading. Mina had her extractions (7 total came out) her spacers and fillings. she was brave. She was strong. She cried - and I cried. You never know when something will trigger your grief. Today it was stickers for her heart monitor during her procedure. And the sound of the error code - that tell tale - low O2/lost pulseOx sound. The sound that was engrained into my brain from our stays in the NICUs. Seeing her with wires, sedated, upset - everything flooded back. My distress was noticeable bc they kept asking if I was okay. No. Not even close. But I smiled and said I was fine - what a kick to the gut today was. Damn baby girl - I miss you. #rowan #rowanpurvinis #rowanseraphina #infantloss #infantlossawareness #chd #chdawareness #chdwarriorprincess #smilelodgepediatricdenistry #smilelodge #guardianangel #lossmama

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thebroken_hearted_artist

Heart sale still going on through next week! Here are some items available! Physical prints and digital copies available! Msg me for details A portion of all sales will b donated to #childrensmiraclenetwork #chd #chdawareness #chdadvocate #heartstrong #achd #CHDCare4Life #etsy #etsyseller #etsysale #acrylicpainting #artprints #artprintsforsale #instaart link in bio

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paigedobrien

HAPPY 3RD BIRTHDAY to my precious girl, PAYTON. You are so strong and have been through more then most of us but you still have a smile on your face! You make me want to be a better person for you! I can’t wait to see what this year has in store for us! I love you ❤️❤️

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loribethfry

❤Annual cardiology check up for our heart warrior today! Echo showed stable results with minimal change from last May. No news is good news for us! See ya in 9-12 months CMH! ❤ #heartwarrior #chdawareness #chdawareness #matildasue #lovemydaughter #bravegirl #toddlerlife #pulmonarystenosis #valveproblems #scarsarebeautiful #heartsurgerysurvivor #proudmom

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rebelhartmusic

Got my hair did last night my Ms Tiffany Renee @stylebytiffany Then I got to play with her awesome round mirror and take pictures of myself in this totally awesome #paparazziaccessories SCARF necklace that I have selling for just $5 I am in love with it! If you love it too comment SOLD and it’s yours! First come first served! #jewelry #paparazzijewelry #rebelsblingthing #sold #performance #performinstyle #glamitup #singer #songwriter #playwright #broadway #mystyle #5dollars #love #transplant #feelingstill #bestill #livefierce #lovefiercely #chd #chdawareness #stillhere #alive

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congenitalheartwalk

1 more day!! We’re ready for you Boston! Make those last minute fundraising pushes and check your emails for walk day details. We can’t wait to see you!! . . . . . . . #chdawareness #chdstrong #unitetofight #walk4chd #1in100

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lavieclinic

Did You Know ?? Nausea is also a potential symptom of a heart attack. Most people watch out for chest pain and left arm numbness, but if your stomach is sick and you don't know why? Try counting on this as a heart problem !! Also this is more frequent in Women than Men For your heart concerns visit Dr Adel @lavieclinic UAE, to know more call us on 📲 +971568871300( 🇦🇪 ) -- #cardiologist #heartissues #heartdisease #coronaryheartdisease #coronaryarterydisease #heartfailure #valvular #angioplasty #angiography #heartcare #cardiology #hearthealth #nationalheartassociation #heartdisease #CHD #chdawareness #heartwarriors #hearthealthy #cardiovascularhealth #heartcare #heartdoctors

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amazing_gracie_girl

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lindsayalano

Mental health. It blows my mind that this is still such a taboo subject. I started seeing a therapist when I was 21 years old for a specific reason that had nothing to do with my heart condition. But as the sessions went on, I realized there was a lot of emotions I needed to process, in regards to 21 years of living with CHD. ____ While I was born with the drive to reach great heights in my personal and professional life, I learned that my constant push for more masked the grief that I hadn’t worked through. The grief of 21 years of open heart surgeries and medical interventions. It took sometime to grieve, accept and learn how to deal with my emotions. ____ At 30, I can now say that I have the tools to work through new experiences and emotions that arise with new cardiac medical challenges. And, I know if I ever get stuck mentally, I can get a reboot by going back to therapy. _____ This is another example of what CHD Care for life looks like. Our mind and our body are completely connected. If our mind isn’t healthy, our body follows. Don’t be afraid to reach out for help. CHD is a lot to process and you will never stop processing. ____ Stay Strong. Stay in Care. Learn more about @thechphc and how to share your story. #CHDCare4life

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richelleish

24 weeks. We hit the first viability milestone 💙 We've had a few appointments since first learning about Baby-Baus's congenital heart defect without many answers. But we'll have, just about, an appointment every week starting in May to hopefully find those answers. . We did get some good news the last couple of weeks (finally). The fluid around his lung has disappeared. So now we'll just have to monitor it to see if it comes back at all. We still don't know why it appeared in the first place. And then my blood tests for my autoimmune disorder (Scleroderma) came back negative; the baby is not being attacked by my immune system. . So far Baby-Baus is strong and seems like a fighter. #pregnancy #pregnancyissues #pregnant #24weekspregnant #24weeks #babyboy #baby #chd #chdwarrior #chdawareness #life

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sincerelyeverest

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dextrojames

Squeezing in a training session between clients! Odd how my sweat has formed a ❤️! Perfect for this cause! It’s Friday! And only 112days until I depart for Moscow, Russia to rendezvous with @adventureconsultants and head south to conquer all 18,513ft of Mt.Elbrus! If you haven’t already done so, myself along with thousands of other #heartwarriors would love for you to visit https://www.gofundme.com/seven-summits-with-dextrocardia and donate to my campaign as I aim to become the first person with a #congenitalheartdefect to conquer all #sevensummits ❤️Thank you for your continued support! See you at the summit(s)! #chdawareness #dextrocardia #sevensummits #heartwarrior #sevensummitstraining #squats #uphillathlete #gofundme #chd #conqueringchd #congenitalheartdefect #chdcare4life #pcha #echotheowl #conquerchd #whereisecho #ispyecho #summitsforhearts #forthechildren #sponsorme #thecitybeautiful #thenorthface

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acha_heart

Bill's story: Born in 1965 with tricuspid atresia, I had a Fontan in 1976 at the age of 11. Although I did very well with it until my early 30s, for the most part, I thought I was "cured." I stopped seeing a congenital cardiologist but got into trouble as I started badly deteriorating. After wasting two years going to the wrong doctors, I went back to an Adult Congenital Cardiologist and had immediate surgery. This was the period when I realized that it was on me to deal with my own medical issues. I had to be the one to speak for myself and know what I was talking about. My parents had done an unbelievable job, but now it was my responsibility. I was perfectly positioned to be my own advocate—after all, it was my condition. I was the one who had the most motivation, conviction and knew my body the best. It was a no-brainer. A frightening one, but a no-brainer nonetheless. My one tip for being your own advocate is to listen. Listen and sift information, filing what you need now and may need to know in the future. The more you can speak the doctors’ language, the more they listen and take things seriously. #CHDCare4Life #CHDStories #CHDAwareness Stay strong. Stay in care. Learn more about @thechphc and sharing your story at bit.ly/2pP4A7e.

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lana.vec

#Repost @manhattancardio with @get_repost ・・・ For women, unexplained fatigue can be a sign of weakness in the left ventricle, the main muscle responsible for pumping blood to the body. This greatly increases chances of a heart attack, so if you're suddenly getting tired in the middle of the day, consult a cardiologist ASAP! * * * #cardiology #hearthealth #nationalheartassociation #heartdisease #CHD #chdawareness #heartwarriors #hearthealthy #cardiovascularhealth #heartcare #heartdoctors #quitsmoking #heartfeltquotes

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claudiaarroyoramirez

Going to create a Team under my baby’s name Penelope she has CHD (congenital Heart Defect) she has had 1 open heart surgery and 2 procedures done and is scheduled for her 2nd open heart surgery in few more months. #TeamPenelopeTorres 💕 #Chocwalk2018 #CHD #chdawareness

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chd647_awareness

Got this today in my local bhf shop..hope turning research into reality for the cardiac community #bhf #researchsaveslives #hopeisresearch #chdawareness #chdcommunity #heartfamilies #timetogivechdavoice

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babybyoakley

Friday and he’s finally feeling better after a sad, grumpy week! 🙌🏻 #readyforspring #orsummer #anythingotherthanwinter

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beyond_bethany_building

⠀⠀⠀⠀⠀⠀⠀⠀⠀ Sometimes morning workouts get postponed to the afternoons, and that is okay! Especially when the morning involves quality conversation with a lovely friend over coffee. Why can’t I have two types of a favorite morning? Oh wait…I can! It’s called, flexibility, balance, and grace. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ I have not mentioned how much of morning person I have been my entire life, but truly I have always loved mornings…or I thought I did. It was not until discovering these incredible resources available to me that I rediscovered mornings in a new light. Figurateively and literally. I love seeing the sunrise each day, and getting to worship the Lord through honoring the temple He gave me. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ I used to struggle to turn off the alarm, or gathering my belongings without rushing out the door. Yet now, a routine has made it not only possibly to DO mornings, but to ENJOY mornings. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Maybe you are reading this and thinking, “I’m not a morning person. Never was, never will be.” …and I hear you. But do you want to be a morning person? Do you want to have the entire day ahead of you? Do you want to control your schedule instead of it controlling you? ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Well, I am here for you. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Because, now whether my normal gym-devotional-breakfast morning routine occurs, or a lovely spontaneous coffee friend date, I claim how my day will go…and that is what sets me up for success. So, you in?! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ✺ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #faithandfitness #heartworkout #strongfoundation #insideoutfitness #insideoutbeauty #insideoutfitness #buildyou #heart #heartdisease #PTstudent #reflection #journaling #writersofinstagram #coffee #coffeetime #gradschoollife #pushyourheart #dancer #danceforlife #faith #heartwarrior #chdawareness #heartdiseasesurvivor #cardiacathlete #strongisbeautiful #boldandbeautiful #BeyondBethanyBuilding #BBBuilding

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lilfoot1993

12 years ago today was one of the hardest days of my life. I had to hand my baby over for open heart surgery. The surgeons were not sure if this particular surgery would work for him but they wanted to go ahead and try it. After many complications he was fully awake almost a week later. (We were SUPPOSE to be home within 5-7 days). He spent another week or so in the hospital. I think he really enjoyed it there 🙂. Today we celebrate his 12 year open heart anniversary. He has had 6 surgeries so far. 4 for his heart. He currently does not have a pulmonary valve or conduit so that will be his next scheduled OHS. Trev has embraced his heart defect. He says he wouldn't have been able to go on his Make-A-Wish trip, go to Camp Del Corazon, spend the night on the hospital and have ice cream 🙂 I hope he always keeps this wonderful attitude about it. It was always hard to look at his future with all these unknowns. Today he is a silly, fun loving bright kid who likes to make people laugh. He loves playing soccer, basketball, writing parodies, Legos, playing piano, hanging out with his friends making crazy videos and doing theater. We thought this was the year for another OHS, but he gets to wait another year or two. We have met so many AMAZING heart kiddos through this journey and made some long lasting friendships along the way bonding about our heart kiddos. Happy open heart anniversary Trevor, mommy loves you❤️ #heartkid #CHD #1in100 #hearthero #chdawareness #chdaware #cardiackid

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abstract4hearts

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tulagoddess

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mightyoakesheartfoundation

Telling the story of MOHF is always a gift for us. We get to talk about Oakes, the love we have for him, and the change his life has inspired. ♥️✨💫 We just shot a new marketing piece and can’t wait to share it with you! Brittney Weis, our Director of Development is a natural behind the camera, and as a #heartmom and #MOHF grant recipient herself her voice and perspective is so powerful! 💓💯🌈 #MOHFbeingMighty #BeMighty #BeingMighty #DoGood #GiveBack #CHDAwareness #CHD #StayTuned #MoreToCome @mikemartinmedia

1

team_wall

Thumbs up for good news!! 6 more months! His conduit is holding beautifully, and only has low pressures running through it right now. Where everything was attached to his aorta is holding steady with no issues near the stitching. His cardiologist’s exact words were "his heart function is just phenomenal!" We know you guys are always praying for our family and little Jake, so we thank you so much and we wanted to share the good news! Here’s to a GREAT summer ahead!!! #goodnews #chd #heartwarrior #jakethebarbarian #heartkids #chdwarrior #1in100 #DORV #TOF #VSD #pulmonarystenosis #MUSC #chdawareness #heartfamily #chucknorriswearsjakewallpajamas #chdsurvivor #myheartkid #echocardiogram

5

prayersforkaspian

4

chefkevinportscher

I am thankful everyday that I didn’t pass all my heath problems onto these cuties #twins #chdawareness

1

valleyvixxen

5

simply_essential_home

❤️This is 5 year old, Josiah, born with hypoplastic left heart syndrome and we're raising money for the Congenital Heart Walk in honor of him and his amazing journey. Please click the link in my bio to read more about his story and/or to donate! Thank you! ❤️ #chdawareness #chdawarenessphotochallenge #chdwalkgreateratlanta

0

gettingfit_withchd

I really love this necklace but can’t figure out where to get it if anyone knows where I can get this necklace let me know please thanks #CHD #heartsurvivor #chdwarrior #chdawareness #chdaware

0