Chdawareness Photos & Videos on Instagram

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rajveermaan811

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everleigh2018

I am just so in love with this little girl!😍 Took a few steps back today, getting comfortable for another week in the hospital. Lil love fighting the flu. Hopeing to continue moving forward. Please keep praying! . . . . . . . . . . . #openheartsurgery #ohs #cicu #picu #ouchildrensmedical #childrenshospital #okc #upsyndrome #extrachromosome #trisomy21 #lovedoesntcountchromosomes #downrightperfect #downsyndromeawareness #CHD #heartbaby #heartwarrior #ForEverleigh #theluckyfew #heartdefect #CHDawareness #rainbowbaby #miraclebaby #militarylife #militaryfamily #Ineverknewiwantedachildwithdownsyndromeuntilihadone 💙💛💙💛

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cocooned_au

Welcome to more lovely new followers this week! My husband Demos and I (Karen) started Cocooned because of this little miss. Our daughter Sophie was born with congenital heart disease or CHD. After two open heart surgeries, multiple complications, a stoma (or colostomy) a reversal and a few other minor surgeries, we felt there had to be a better way to make recovery post surgery and during treatment easier. You can read our story in full on our website. We’d love to hear your story. What brings you here? xx .. .. .. .. #myheartkid #heartkids #chdawareness #kidshospitalgown #childrenshospital #chd #cocoonedwrappedinlove #medicalclothing #paediatrics #openheartsurgery

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mich1112

I’m filled with an enormous amount of gratitude to each and every person that donated and walked with us on TEAM GUS to raise funds and awareness for #CHD through #congenitalheartwalknyc TEAM GUS raised over $8,000!!!! I feel beyond blessed to have been able to share this day with so many people I love and with so many people that love Gus. #chd #teamgus #topteam #chdawareness #advocatelikeamother @mattsemrick @jenaks1 @iamanartist75 @jaimiekelton @dufftingarcia @garciacherilyn @katyywilliamson @gwilliamson79 @jeffdnyc @jenne123 @darylepreminger @momkor01 @nicksemrick @oliverbfrench @proc113

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shelbz30_heartmama

💙3 years ago at this time, on October 14th, I was watching my child get hooked up to machines and IVs. I was just told about his heart defect. My mind was spinning. My heart felt shattered. I was making random phone calls and preparing to “sleep”, the first of what would be many nights, in the hospital. I was asking the first set of thousands of questions that would be to come. And I was praying to God to keep my baby safe. These 3 years have been the most intense roller coaster of painful downs and the highest highs. I can’t believe the little boy I am blessed to be the mom to. I can’t believe the things he has accomplished. The things I have accomplished. And the things we have done together to raise CHD Awareness. I can’t believe that before this day, I was so blindly unaware to what CHD is. I am so grateful that in our struggle, God has given us direction and shown us what we are capable of over coming. 3 years ago today, I was a hot mess. Today, I’m still a hot mess, but from the dark I have found so much light. May his little light continue to shine on ❤️ #iwearredforcharlie #chdawareness

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lipstickwithlittleones

I wasn’t sure how coming back up to Stanford was going to feel. It was hard. We went to places we had visited earlier this year but at the time Adelyn was alive in her hospital room. Today, she was not. It was a sad reminder. But the rainbow after the rain was reuniting with these beautiful faces. If it weren’t for these wonderful ladies (many doctors and nurses missing from these photos that we didn’t get to meet up with) our year and time with Adelyn would’ve been much harder. Love you all with ALL our hearts. #lipstickwithlittleone #lipstickswithlittleones #adelyn #adelynkathleen #infantlossawareness #octoberinfantlossawarenessmonth #chdawareness #CHD #lymphangiectasia

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aiyanastestimony

Having chest pains right now and I'm working through it... i was trying to speak and in so much pain i guess he couldn't hear me but it's okay.... #blessed #best #instagram #gospel #chdawareness #news #news #prayer #hospital #life #live #echocardiogram #doctors #win

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myannasheart

Heart tote ready tonight for another heart warrior. Myanna found some cute toys that she hopes Axl will like! Mommy will mail in the morning. @cia_mommy #hearttotes #MyannasHeart #smilesformiles #strongerthanmystorm #chdawareness #zipperclub #strongertogether #heartsuperhero #heartstrong #payingitforward #1in100 #congenitalheartdefect

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heartkids

Today is Pregnancy and Infant Loss Awareness Day. HeartKids sends our love to all of the heart angel families in our community this month and always ❤️💙 Please join us in sharing your words of support and love for all who have lost a precious heart kid ❤️💙 #pregnancyandinfantlossawarenessmonth #chdawareness #heartkids #support

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iheartkhansaa

Day 1 - Yesterday was the first full day of Khansaa being out of the hospital in almost two months. Grateful is an understatement to how we feel having her home with us. Although Yellow Door is a temporary home away from home, it is such a blessing being here, and the environment is perfect for Khansaa. Since we have to stay local here in Charlottesville for at least 30 days after discharge, I'm going to enjoy these beautiful mountains and plenty of snuggles with my cupcake! She has been so happy and full of smiles watching her brothers run around, cuddling with Mom and Dad, hanging out with my oldest who she adores, and just living her best baby life. God I am forever grateful and cannot say thank You enough. #QueenKhansaa #TeamKhansaa #HeartWarrior #chdwarrior #hlhswarrior #chdawareness #hlhsawareness #pediatrichearttransplant #pediatriccardiology #blessed🙏 #Godisgood #believeinhisplan #faith #LivingALemonadeKindaLife

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mmenigo

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the_chloe_project

In honor of Halloween, Here's a Spooky Heart Fact: A heart can continue to beat when separated from the body...... SPOOKY! #chdawareness #1in110 #4amxraysarefun #xraytechsarethebest #hlhs

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ai_evilgenius

#JosieStrong So we in lap 3/3 as far as #HLHS surgeries. I love this little woman so much ( my #babyqueen ). I'm asking if everyone can have her in your prayers. Following Psalms 55:22 we know the importance of throwing our burdens on Jehovah we KNOW he supports his righteous ones. I know prayers help also for a certainty. Thanks so much for the support you've given us thus far, believe me it was needed and appreciated. Alright Love y'all #agape #fontansurgery #hlhswarrior #hlhsawareness #chd #chdawareness #jw #childrensheartfoundation #nationwidechildrenshospital @nationwidekids @heartkids @savetheheartbeat @hopeful_hearts_foundation @someassemblyrequired___ @chd

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alyssakhoff

Day 11 Post Op: We are officially going crazy! Ha! If this face doesn’t say “GET ME THE HECK OUTTA HERE!” I don’t know what does! Nothing new to report, just another day of progress with decreasing his oxygen support. Sonny is doing fantastic and progressing quickly! Today was also the first day that Sonny was off Milrinone and did GREAT! This might not mean much to most, but in the heart world this is HUGE. This means Sonny needs no pharmaceutical support for his heart and is no longer considered in heart failure. HUGE! He is currently only on pain management meds (Tylenol and methedone that will be weaned over the next few days), baby aspirin- which he will take for the rest of his life, and his diuretics that will also be weaned before we leave or shortly there after. We knew going home on a ton of medications was a possibility, and are so thankful that it looks like we will be going home on LESS than he was on prior to his surgery. Also, it’s so nice to be able to say “just another day” after some very scary days last week. One of his doctors told us today during morning rounds that they were extremely happy with Sonny’s progress and she was glad he finally “turned the right corner” in recovery. Looking back and talking to his care team over the last few days I don’t think we realized how serious it was and could have been just a few short days ago, so we are so thankful he finally came around. We are one step closer to bringing him HOME. ☀️

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cecilia_hoffhaus

She won herself a green ball and wouldn't put it down. #heartwarrior #hlhsawareness #chdwarrior #chdawareness #hlhswarrior

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nicksheart

Stopped in Oklahoma for our second night’s stay. We are trying to get further south for warmer weather but Winter is coming. #CHDLife #CHDAwareness #Nicksheart #MyCHDwarrior

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ghostofparacelsus

So proud of her. And getting ready for my favorite month. #mosaicdownsyndrome #chdawareness #heartwarrior #october #pumpkin

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jazzyuk

Half way day #30costumesin30days #chdawareness#halloween#kids#wonderwoman#toddler#wonderwomancostume#momswithcameras#fancydress#chdwarrior#fun#childhood#superhero

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jaxc607

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jaxc607

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jaxc607

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jaxc607

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sarahkennedydot

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jaxc607

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jaxc607

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this.heart.mom.runs

Thank you to team Nothing Ryhmes with Isaac! We love that you guys come out year after year to support our boy. *Missing from photo - Uncle Francis, Auntie Janine, cousins David & Veronica, and Christina! @quinkmf #heartbeatsfamilyfunrun #chdawareness #1in100 #heardisease #bornwithabrokenheart

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this.heart.mom.runs

This guy crossed the finish line of his first 5km (he walked/ran/played tag for about 2km...hitched a ride in the stroller for the rest)! Thank you Heart Beats for all you do for families like ours. #chdawareness #chdresearch #1in100 #hearthero #mechanicalvalve

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chdinformation

Please be advised that it is totally normal for your child (usually 6 to 8 year olds) to require some form of sedation as the MRI procedure involves remaining still for almost an hour. Your opinion on wether your child would be capable to cooperate with the procedure is highly valuable, as it is one of the factors that could affect wether your child receives sedation for the procedure or not. ( Image credits: radiologyinfo.org ) #chdawareness #chdwarrior #CHD #CHDinformation #chdaware #chdsurvivor

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cesarheartwarrior

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the_kearneys

Down syndrome awareness month day 13 . Ok so we had a busy day at a birthday party today and major house clean yesterday so we are a Little late on the update.... approx 50% of children born with Down syndrome are born with heart defects, this is why Bridget had been taken to NICU for the first 3 days of life, so they could monitor her and make sure all was well, we had been told about some heart problems before Bridget was born although we weren’t sure of what exactly, so when she arrived and we discovered she had DS and that she was beautifully pink and breathing on her own, it was such a relief. Although the picture looks scary it was 3 days being fed by tube, sleeping on a padded bed in a heated incubator, This little pet didn’t want for anything except Cuddles. The staff in #royaljubileematernityhospital were outstanding! Luckily for us Bridget had 2 vsd’s (tiny holes) in her heart one which closed at approximately 4 months and while the other has gotten significantly smaller we are hopeful it will close on its own too!! We attend cardio reviews regularly. In fact we have one tomorrow. So keep us in your prayers 🙏🏻 We have met so many other families of children with similar and also more severe heart defects with some requiring surgery, they are #heartwarriors #heartfamily #chdawareness #chdwarrior #downsyndromeawarenessmonth #downsyndrome #morealikethandifferent #upsyndrome #extraordinary #iamable

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jamielook.creations

❤️ Team Lia’s Got Heart. #heartwarrior

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vicky_kittle

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vicky_kittle

Throwback...🌟 I haven’t shared many snaps of my pregnancy mostly because I didn’t take many & secondly because it all just went by in a blur really. It wasn’t exactly the dream pregnancy that I had hoped for & instead was a time full of anxiety, stress & worry. Despite this though, I wouldn’t change a single moment as on the 4th April 2018 I was blessed with the most beautiful of all life’s gifts, my darling baby girl 💖 #throwback #pregnancy #heavilypregnant #36weeks #memories #bunintheoven #babygirl #babyonboard #wishyouwerehere #gonebutnotforgotten #grief #loss #chdawareness #iamstillamummy #mybaby #love #mummylovesyou #mygirl #alwayswithme #doingitallforyou #forophelia❤️

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mamasweetbaby

I almost made it through the weekend...and then a #target display attacks my son... #toddlersofinstagram #chdawareness #chdwarrior #headinjury #sanasanacolitaderana

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nicksheart

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essentialsfamilyhealth

A heartwarming card ♥️ for a cold fall day ☕️🍁 A few weeks ago we were part of the @superheroheartrun at Werner Park. This week we received this sweet card from @heartheroes ♥️ Thank you so much 💌✨

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chd_hearts_and_carolina_moons

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chdinformation

• MRI • Did you know that MRI is a painless healthcare procedure that doesn’t subject the patient to any ionizing radiation, instead it depends on a magnetic field and radio waves that are then transferred onto a computer and provide images of body structures. (Image credits: nationalmaglab.org) #chdawareness #chdinformation #chdsupport

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tomboecker18

Attended the Superhero Heart Run today for my niece Piper! Saving the day for those who suffer from Congenital Heart Defects. #heartheroes #chdawareness

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warrior_zane_

🖤❤️

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tofheartmama

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that_heart_guy

Need to make it back to Europe soon. I may or may not be looking at tickets 👀 This time I’m going to spend more time wine tasting from Koblenz to Trier. I believe, I took this photo somewhere near Trier @mar.zio is this correct? #trier #triergermany #germany #deutschland #wanderlust #wandern #hiking #nature #optoutside #winecountry #germany #europe #eurotrip #wein #riesling #winedown #beautiful #instagood #instadaily #chd #chdwarrior #chdawareness #zipperclub

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a_broadabroad

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thejourneyofjust.us

✨Day 6:✨ Do you guys notice anything different?!? Yep.....the nasal cannula is GONE!! We have been oxygen free for the past 14 hours!!!!! Do you know the tears of joy that I’ve cried today?! I haven’t seen my baby’s face so clear since he was born! I guess you could conclude that we are continuing to fly right along!! We’re still working on feeds but that’s just a minor struggle that we can work on! I’m so proud of my guy!! #myhero #chdawareness #TOF #PA #1in100 #heartwarrior #heartmom #everyheartbeatcounts💓 #tinybutmighty #heartstrong #zipperclubmember #teamjust

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nicksheart

First stop was in Iowa on our 6 month RV trip. #CHDLife #CHDWarrior #NicksHeart #CHDAwareness

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apav121

I wish the weather would have cooperated - it was cold, and windy, and even rainy/snowy! But it was a good time! We played and did our walk in support of CHD's. 3 out of the 4 of us sported our heart hero capes - go figure the actual heart hero wanted nothing to do with his! And the boys even got metals for completing the walk! We look forward to participating next year - hopefully in better weather! #mom #momlife #momoftwoboys #momof2boys #3yearold #5yearold #heart #hearthero #superhero #superheroheartrun #desmoines #iowa #congenitalheartdefects #openheartsurgery #chd #CHDAware #chdawareness #braveheart

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ybrrra273

❤️❤️ #chd #chdawareness #1in100 #hlhs #dorv #tga I’m really missing my dude today.

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hannahsudlow_

Thank you @sweetjuliagrace Foundation for caring for our special kids, and continually loving on Evelyn. We had the best day yesterday and Evelyn felt very VIP — so did Esmé 😉 #dancingintherain #thesweetjuliagracefoundation

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runhard_livefull

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thenursemum

A few of you may have heard me voicing my fears about winter, some of you will have even seen my crying on the gram. But do you really understand why? This photo is last November when Jaxon caught bronchitis, a chest infection. Scroll right for a video of him before interventions. He has high flow oxygen over a feeding tube in his nose & a cannula in his arm pushing fluids. The Drs were struggling with the balance of heart and lungs. His heart needed the volume from feeds but the stomach was pressing on his diagphram making his lungs struggle. I’d never seen my baby struggle from any of his multiple diagnosis, until this common childhood infection. It was because of bronchitis Jaxon went onto full NG tube feeds dripping slowly into his stomach around the clock. He never returned to the bottle (see photos of once upon a time)& he’s vomited large feeds ever since - life-changing. So again, why am I scared of winter? Since this infection, we’ve found out Jaxons heart is 4x the size it should be and it was progressively getting worse for six months. It seems to have stabilised but is still terrifyingly huge and working overtime every second of every day. If you add a chest infection to the mix now, whilst he’s home, essentially - it could take his life. Reflecting on this, I’m an ever grateful for the nurseries that rejected him & the weekly struggles I have with family+friends doing shift work at our home. If you have a child please, PLEASE be aware of the impact of common colds and illnesses have on vulnerable babies and children. Please do not just send them to nursery or school because ‘they’ll get over it’ &you’ve got a holiday booked to pay for. Children with low immune systems, with struggling organs already, may not survive what your child brushes off. OR they may have a life-changing impact. I know the pressures of work but please do not take the risk. . . . . . #childhoodillness #bronchitis #pneumonia #flu #momblogger #mumsnet #mumsnetbloggers #pblogger #mumclub #emmasdiary #winter #immunesystem #vulnerablechildren #unique #rarechromo #1p36deletionsyndrome #chdawareness #chdwarrior #ckd #nurseries #backtoschool #memo #publicannouncement

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prayersforkaspian

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yanacorn91

La'yla had her #heartcath this week with an overnight stay at children's. She's such a warrior. Her #glenprocedure is in 3 weeks, and we are going to be in patient for at least 2 weeks they said. 😣 Its so scary to be going through another #openheartsurgery with my little. #hrhs #chd #chdawareness #zipperclub @scarsarebeautifulproject

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therenovatedhomeofchaos

No more Oxygen for this babe!!!!! 🙌🏻🙌🏻🙌🏻 Also, we got the news we’re moving to the CV acute room (step down unit) soon which means he is stable enough to leave CTICU. This is HUGE for Nash, friends! Next we work on feeding by bottle, right now he’s barely taking 5mls so we need to get better at that! Thank you so much for your support and prayers through everything, when they say it takes a village, it truly does. Thank you to my parents for holding down the fort at our home. Thank you to everyone who has donated to the gofundme or the meal train for dinners at home, and thank you to the people across the country who want to send Nash a gift and pray for him daily. You all mean so much to our family, I couldn’t possibly ever repay the love and support we feel. ❤️ #chdwarrior #hlhswarrior #hlhssurvivor #hlhsawareness #thankful #chdawareness #chdbaby #babyboy #nashtheincredible #nash #momlife #motherhoodunplugged #heartbaby #heartwarrior

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katie__mc__

I’m speechless. Our girl is just pure perfection. So in love! #dsdn #downsymdromeawareness #chdawareness

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colelynn09

Family time in New Jersey! Jaylynn got to meet so many family members who prayed and prayed for him all this past year! #blessed #hlhs #chd #chdawareness

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colelynn09

NYC! Jaylynn got to ride a bus and subway for the first time! 💙 we went to the wax museum, 9/11 museum and explore the streets of New York! #hlhs #chdawareness #chd #livingwithhalfaheart #wewilltraveltheworldwithyou

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cbaudendistel

14. CONNECT• • • Thax and I are strongly connected through music. There are so many times I’ll hop into the car and the most *perfect* song will come on immediately... usually making me tear up or cry. When I was pregnant with him, we’d listen to all my favorite songs, I’d sing to him (in my not so wonderful voice), and we’d discover great new music together. • • #infantloss #neonatalloss #pregnancyandinfantlossawareness #hypoplasticleftheartsyndrome #captureyourgrief2018 #chd #pail #pregnancyandinfantloss #chdawareness #captureyourgrief #newborn

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charleejamesromance

#ink for my #heartwarrior ❤️ post-op heartbeat + be brave (my four-year-old’s favorite saying) #chdawareness #congenitalheartdefect

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that_heart_guy

Enjoying my free glass of wine for being a wine club member. I wish, I could make it out to Grapevine Historic Downtown more often! #wine #winelover #winedown #wineconnoisseur #pinotnoir #redwine #grapes #grapevinetx #sundayfunday #messinahof #messinahofwinery #chd #chdaware #chdawareness #hearthealthy #chdwarrior #zipperclubmember #zipperclub

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thechronicdreamer

Our annual family fun run with Heartbeats was a great way to spend a morning! Finn was third fastest male overall in the 5 km race, (not bad for a 95 lb 14 year old) Stella spent the morning with our own heart warrior Bentlee, and then ran the 1 km with the kids. Thanks to @cleidl and @leidl77 for always organizing us with team shirts and pictures! This has become one of our favourite family traditions!!! #heartbeats #bentleesbeats #yyc #run #runningroom #chdawareness #chdwarrior #goodforthesoul

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micahandmiabelle

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thehalf_hearted

Finally starting to feel like #fall around here with the #temperaturedrop I love all of the #seasons equally. they each have their own special qualities and #memories to bring to the table. As we close on the season of summer and are beginning the warm fuzzy flannels, hunter boots, and punkin’ everything season I’m #grateful despite the current “season” I am in... trying not to let it consume me and make me miss out on what’s in front of me right now. 3 beautiful children, my precious #greatdanepuppy #family #friends and #autumn ... it’s a season of remembering To be #thankful New #blog post on my #hlhs journey posting today I hope you will Check it out. If you haven’t already please be sure to subscribe to the blog.. show your #love and support..... ........ ...... ..... .... .. . . #rainbowbabiesandchildrenshospital #osu #chdawareness #chdwarrior #chdmom #surgerycountdown #depression #overcomingobstacles

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kgierhart

Rainy start to the Congenital Heart Walk 2018 in Central Ohio, but the rain stopped once the walk got underway. I only did a mile this year, and a slow one at that, but one is better than none! #grombre #purplehair #silverhair #chdawareness #acha #kindasortaaorta #congenitalheartdefect #congenitalheartdisease #aorticdisease #aorticaneurysm #coarctationoftheaorta #openheartsurgery #broandsis #asseenincentralohio #614 #5k

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helendoyle

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heartbabymj

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itsmelucy___

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fluffyambrose

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jackbeatingchd

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rossgfc88

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shelbiehebert

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zemiah_heart_warrior

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alyssakhoff

Post Op Day 10: Not much has changed. Sonny is still doing great and chugging along. He seems to be surprising his team with how quickly he is progressing! Because of how sick his lungs were those first few days, they decided to “start high” on support post extubation and let him drive the bus. Well yesterday he let them know LOUD AND CLEAR he was ready to pick up the speed! Most of the morning he was fussy, swatting at his scuba mask and bi-pap mask (they toggled between three different masks trying to find one he liked.) Around noon he LOST IT, was throwing a fit, dropping his sats, wouldn’t calm himself even with every option we had medication wise to calm him. Finally they said “maybe he wants less pressure and more flow? Maybe he would do better with less support?” Within a few minutes he was on the ram cannula, with less support and sound asleep on his belly. HE LOVED IT!.. and spent most of the day just like this. He got the full spa treatment from mom and dad most of the day with hours of back rubs and head rubs while he snoozed. It was a great, but very boring day for us! Hoping to keep up the progress- and hoping to be in the step down unit soon! ☀️

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oliver_the_star

This was the last photo taken of Oliver alive, one hour after this pic is when my whole world came crashing down💔 not a day goes by were I don’t think “was there anything I could have done differently? Was it my fault? Why him, why us?” But there are questions that can’t be answered, and I found one of the first steps towards accepting what had happened was to realise there was nothing more I could have done and I need to remember Oliver was in my arms as he passed and that brings me comfort rather than passing in theatre for example. Me and Jacob done our absolute best to give him such a loving special life and for first time parents aged 20&24 I think we done a good job ❤️ #infantlossawareness #chdwarrior #oliversstory #lifeafterloss #griefjourney #chd #chdawareness

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amazing_gracie_girl

Medical milestone!!!🙌🏽 yesterday was THE DAY! We had to catch it on video.....Gracie’s LAST DOSE of enalipril for her heart. She’s been on many different medications for various medical needs, primarily her heart, ever since birth. This is one medication she has depended on for a number of reasons to assist her heart ever since she was born. Her last echo revealed normal heart function and her heart size is back to normal. Her heart has successfully remodeled itself and healed. This moment here....I cannot express what it means for our little girl. It’s everything💪🏽 ❤️ ❤️ #heartwarrior #chdawareness #healthy #heart #milestone #thankful #grateful #thankyougod #strength #theluckyfew #downsyndrome #inclusion #unstoppable #acceptance #nothingdownaboutit #smart #able #youcandoanything #youcandoit #yougotthis #weekend #sundayfunday

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abitofsimplicity

The way she looks at her daddy just melts my heart 😍 ⠀ ⠀ She finds so much joy and comfort in him. He is her jungle-juston (no jungle-gym needed 😆), her safe place, the man who completely stole her heart. ⠀ ⠀ My heart finds so much happiness in these two! ⠀ ⠀ #teamlaineybug #lbsjourney #laineylarue #chd #chdawareness #feedingtube #tubie #supertubie #gtube #motherhood #motherhoodthroughinstagram#myperson #nothingdownabouther #theluckyfew #t21 #changingthefaceofbeauty #upsyndrome #nothingdownaboutit #downsyndromelove #extrachromosomeextracute #downsyndromebaby #downsyndromerocks #morealikethandifferent #downsyndrome #downrightperfect #DownSyndromeAwareness #bornthisway #dontlimitme #inspiringothers #daddydaughter

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theheartofit_au

7 months old just like that! It’s been a busy month of crawling, sitting up, learning to wave and nailing the words Dad & Dadda. Not sure he knows exactly who it is yet but definitely says it more when Sam is around. Moved into our house and into everything already. Send help!

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katieboglekay

#bluebaby #pinkbaby never forget the surgeons words #blessed #chdawareness

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maptandf

Kitty Gorge trail Jarrahdale to Serpentine

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babypenelope18

❤️💔❤️ #chdawareness #chdwarrior

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