Chdwarrior Photos & Videos on Instagram

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rai_muliasari

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mdd1230

Heading down to @995qyk radio at the @lukebryan concert to show MOST PEOPLE ARE GOOD!! Social media friends, family and #tampabay Luke Bryan fans, let’s flood social media with positivity today as we raise money and awareness in memory of Luke Bryan’s baby niece who received her angel wings last year and ALL the #chd and #downsyndrome warriors out there!! A lot of fans don’t know about The Brett Boyer foundation. I am encouraging all of you to click on the link in my bio to donate at least $5 to this incredible cause. No amount is too small. GOD CAN DO A LOT with a little!! Please repost/share this even if you can’t donate and hashtag #brightforbrett so we can see how much God is able to do today! I had to share a few pictures of special #chd and #downsyndrome warriors who made me one of #theluckyfew to be impacted by their lives. Cash, Venmo or donate directly to the link! I will make sure @lukebryan gets all the cash tonight donated today by his fans to give directly to @brightforbrett The Brett Boyer Foundation! I’ll post the link on my Facebook in the comments as well 💛🐝Thank you!! In a world of ordinary, bee 🐝 extraordinary! @brightforbrett #brightforbrett #chdawareness #chdwarrior #nothingdownaboutit #downsyndromeawareness #lukebryan #lukebryanconcert #tampabay #theluckyfew #995qyk

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bowsbyfro

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klestitian

Today was the greater Pittsburgh congenital heart walk- one of my favorite events. I am completely overwhelmed by the support for our Max. To those who walked, donated, or sent their love- we are grateful beyond measure ❤️ #unitetofight #walk4chd #1in100 #maxthebrave #chdwarrior

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hartrick

How Tad and co. feels about going back home today

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chroniclesofjust.us

My t shirt finally arrived!!! Thank you @chdwarriorshop I LOVE IT!!! ❤️❤️❤️ #heartmom #chdawareness #heartwarrior #chdwarrior #teamjust #everyheartbeatcounts💓

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brit_jo_cuer

There are many of you that have been following our pregnancy journey, so we thought it was time to give you all an update on our boys 💙 As hard as this is to talk about and face our reality, we know that God has a plan and is with us every step of our journey ~ about 2 months ago and after a long day of sonograms, echocardiograms and speaking with multiple doctors, we got a pretty heartbreaking diagnoses for Baby A (Hudson) ~ he has a Congenital Heart Disease called Hypo-plastic Left Heart Syndrome. This means the left side of his heart is very underdeveloped and will require 3 open heart surgeries to help reconstruct his little heart. Needless to say, we were devastated. We all pray for healthy babies when we get pregnant so when we were faced with this diagnosis it was hard to wrap our brains around it. We have a great team of doctors and will be delivering our boys at Children’s Mercy in Kansas City. We’ve meet with our team in KC a couple of times now and have grown to feel like family around there. They have given us great hope and know that Hudson will be in the best hands! There are still a lot of unknowns and questions that can’t be answered until our boys arrive but God chose us to be on this journey for a reason and we have all the hope and faith that both our boys will be the strongest, bravest and most amazing boys! As of now, we do know that Hudson is already a brave little boy, this is fixable but it will be a different journey our family faces. We plan on temporarily “moving” to KC around the first of September to be prepared for the boys arrival! Hudson is loving life right now 😊 Hunter will be the most amazing, caring and loving brother and it’s so great to know that he will be there every step of Hudson’s journey as well 💙 We just ask that you all pray for Baby Hudson as well as Hunter, mommy and daddy as there is nothing more powerful than prayers 🙏 This isn’t the journey we had planned but this will be our journey and I’m so thankful to be surrounded by the most amazing family, friends and doctors 💞 #chdwarrior #heartwarrior #chdawareness #hlhs #twinboys #twinmomma

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kris7876

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alissabaptista

My littlest love woke me in the night with a croupy cough and sounds of trying to catch his breath. He had the prongs of his cannula out of his nostrils. I quickly readjusted his cannula and then scooped him up in my arms to calm him. He rubbed my back as I patted his. How can something so very simple fill me with an overwhelming love? I was tired, it was about 3:30 am, but I felt that it was a privilege to care for this boy of mine. He is acting less baby like by the minute. These days of a little one in my arms are numbered. . . . #memoirsofmotherhood #mystory #downsyndrome #downsyndromelove #dsdn #chd #chdwarrior #theluckyfew #upsyndrome #morealikethandifferent #nothingdownaboutit #nothingisordinary_ #simplychildren #kidsbabylove

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jodielhenderson

I’d just put all those balls away.......... 🤦🏻‍♀️ #baby #messy #illjusttidyupwhenyougotobed #chdwarrior #heartbaby

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kitkatlift

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dark_angel_anarchist

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mimisopenheart

I am determined to be full Paleo before my surgery in hopes it will make an easier recovery in terms of inflammation and other factors. But, finding things that you still want is SO hard to find and stick with! Happy to report @birchbenders Paleo pancake and waffle mix seriously tastes amazing!! Found at Costco too. My sister suggested adding some honey in the mix because it is a tad bland, but that totally did the trick. I even got my Dad (who is stubborn about food😂) to try and he loved it! So thankful this lifestyle has more choices that are tasty!! Lazy and rainy Saturday morning with pancakes🤤👌🏻 . . . . #mimisopenheart #paleo #paleobreakfast #lifestylechange #lazysaturday #foodie #chdwarrior #chronicillness #openheartsurgery #invisibleillness

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savingholinsheart

Holin and “da PawPaw” fishing last night 💕💕and she caught a few that got away! #summernightswithgrandparents #hlhs #chdwarrior #singleventricle #epilepsy #ecmosurvivor #transpositionofthegreatarteries #brainbleed #pacemaker

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albieslittlebrokenheart

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bagbag_agr

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cerysedwardsdyson

GOOOOOOD MORNING ✨ // 5 MONTHS...I think me and my little mate are doing juuuust fine & today is a pretty great day to be alive...😍 #zipperheartclub💔🌹 #heartwarrior #chdwarrior #heartscar #OHS #openheartsurgery #scar #5monthspostop

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mrs_carol_johns

Morning ✌🏻 ❤️ We have a little bit of exciting news about Toby’s bracelets! The awesome @duckystreet (who makes to coolest temporary tattoos) have sent us some of these cute all you need is love Heart tattoos to give away with our bracelets...so from today with every bracelet order you will receive a tattoo (while tattoos last of course!) how cool is that?! #lovefromtoby #duckystreet #chdawareness #chdwarrior #handmadebracelets #wishbracelets #charity #love #raisingawareness

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lovefromtoby

Morning 👋🏻 Something a little bit exciting is happening over here! The awesome @duckystreet (who make the coolest temporary tattoos!) have sent us some tattoos to give away with our bracelets so... With every bracelet order you will receive one of these cute all you need is love heart tattoos! (While tattoos last!) ❤️ What are you waiting for!! 🏃🏻‍♂️💨😘 #lovefromtoby #duckystreet #handmadebracelets #wishbracelets #chdwarrior #chdawareness #raisingawareness

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rmalks

Put your hand up if you’re finally back in Wales!!! One step closer to coming home, eeeeeeeeeeek! No more trying to split ourselves in half, no more living in Bristol and more importantly no more bloody hill! Well, not for a couple of months at least. #solongmumguilt #farewellreadymademeals #aufwiedersehenhillclimb #onestepcloser #avsd #tetrologyoffallot #pulmonarystenosis #chdwarrior #downsyndrome #t21

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freddie_the_fighter

Be A Hero For HeartKids Photo Challenge 💙 HAPPY PLACE 💙❤️ Happy place is with you safe in my arms 😘 Today it was celebrating your 3rd birthday party with our nearest and dearest 💙❤️ Full of happy memories @heartkids #heartkids #heartkid #myheartkid #heartwarrior #heartbaby #chdwarrior #chdsurvivor #chd #chdawareness #photochallenge #beaheroforheartkids #superbossday #superboss #frederikryszard #frederikryszard #freddie #scarsarebeautiful #congenitalheartdefect #tga #transpositionofthegreatarteries #vsd #openheartsurgery #zipperclub #happy #love #scarstoyourbeautiful #time #happyplace #mickeymouseparty

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jaxc607

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different_kind_of_perfect

Happy Heartiversary Tank!!!! A year ago today you had your first ohs. To say it didn't go well or as planned could be an understatement. I remember waking up in his room the next morning being afraid to open the curtain to see if he was ok... afraid of what the update would be. Any heart mom will tell you how critical the first 24 hours are after surgery. I remember being willing to give anything for a normal boring day with our son. Fast forward to today where we celebrated and enjoyed time as a family. We counted our blessings as we know how truly fortunate we are to have him with us today. While there is no cure for his condition, we celebrate the anniversaries of victorious battles. We do our best to celebrate overcoming these obstacles, rather than being upset it happened. Cheers to continuing the celebration for the rest of the weekend!

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laesafaith

Is #flashbackfriday still a thing? This stunning flashback showed up on my memories today, from exactly two years ago, and I cannot help but share it again. For those that are newer to our story, Evelyn was born prematurely at 32 weeks old. She was intubated at birth, due to a severely unstable airway, and more than two months later, after countless failed extubation attempts, she received a tracheostomy. It was the hardest decision to go ahead with a Trach. It felt like we were giving up on her, giving up on hope, and on everyone else’s prayers. We were devastated that she couldn’t breathe on her own. But, her airway is only a small piece of the puzzle that is Evelyn. The larger bit, is her complex congenital heart defect, Tricuspid Atresia. And though the Trach has placed added stress on her cardiology team, getting off the ventilator was necessary to preserve the health and strength of her lungs, a necessity for the strength and survival of her special heart. Now at two years old, she is a thriving toddler. She’s endured hundreds of days in the hospital (both the NICU and PICU), countless procedures and six surgery’s, including her first open heart surgery last spring. She continues to amaze and shock her doctors, especially the ones who were unsure of her ability to thrive in any capacity. We continue to live this beautifully broken life just one day at a time, taking each pain and each joy as it comes. Breathing in, and exhaling LOVE over it all. Thank you for choosing to walk alongside us. 💛

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dk_febrian

We run for honoring our Son 👼. And sending love for all #chdwarrior and #chdangel all around the world from #bogor #indonesia #runforlittlehearts2018 #runforlittlehearts #chdawareness @mrs_leopaaaaard

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sunshinebakedbeauty

I haven't broke the news to Instagram yet, Landon came home!!! After 6 months in the hospital, he finally is home! We all couldn't be happier!!! #7months #chd #chdwarrior #finallyhome #chdfighter #dextrocardia #mendedhearts #fho #floridahospitalfamily #cvbabies #cardiackids #lookatmego

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barbercedeez

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marissadomanico

Post op day 11....cut back on oxycodone, still take as needed. But using Tylenol around the clock for pain. I’ve been walking so much, my phone shows 6,756 steps and 2.7 miles! What did you do today? 😝💁🏻‍♀️ Had my new pacemaker checked, I am paced just about 100% of the time in both chambers of the heart. So basically this keeps my heart beating for me. My lower end heart rate was changed to 70 beats per minute (it had been at 80 since surgery). Now it’s time to let the pain meds kick in and go to sleep.... 🖤💎 #chdlife #chd #chdwarrior #chdsurvivor #health #stanfordhospital #transpositionofthegreatarteries #nevergiveup #cantstopwontstop #healthylife #healthymind #healthybody #healthyheart #instagood #photooftheday #openheartsurgery #teamnodaysoff #motivation #life #1in100 #nodaysoff #scars #lucilepackardchildrenshospital #heartstrong #heparin #bloodthinners #pacemaker

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kristinrenaeh.chdsurvivor

I decided to try cupping and acupuncture today for this shoulder. I have been struggling so much with it since surgery, I actually felt Instant relief, and scheduled my next 4 appointments for acupuncture and cupping, here’s to hoping it continues it works! 14 weeks till competition! #chdwarrior #openheartsurgery #open heart #openheartsurgery #openheartsurgerysurvivor #chdawareness #chdlifestyle #chd #chdaware #singleventricle #single #gym #gymlife #gymmotivation #gymfit #fitness #fitnessmotivation #fitnessjourney #fitnessgirl #weighttraining #gym #weights #sweatequity #ufe #ufehavoc #ufehavoc2018 #cupping #accupuncture #results

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adventures_zanna

Shopping, riding, and movie watching. Zanna and I have conquered two full days of Mall of America! We rode a couple of roller coasters (you can see the video), got to watch The Avengers in the awesome theatre, and literally shopped till we dropped. And even found a Dough Dough store!! And one of the coolest parts was staying at a hotel that was in the mall! These past two days have been a blast. So much laughter and fun. And I have truly enjoyed just spending time with my parents. It has been so great being able to relax and enjoy this time before Mayo. I have savored every moment and every icee. This trip has been amazing so far. And I’m ready to conquer the weekend. I’m not sure what answers I will get at Mayo but I know whatever happens, it will be ok. Just so thankful for all the joy that has been found along the way. My legs are sore but my heart is full. And Mall of America, I hope to see you again. And to whatever lies ahead, I won’t let it break me down. I will find a way to keep on going and find hope along the way. #mallofamerica #shoptillyoudrop #icee #funday #legostore #funtimes #adventure #chdwarrior #oxygen #avengers #happy #joy #nevergiveup #fighter #strong #chd #mayoclinic #movie #vacation #tricuspidatresia #hope #chronicillness #spoonie #inogen #smile #doughdough @doughdoughmn @mallofamerica

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mlhofsandiego

😍😍 #Repost @fourheartsshop with @get_repost ・・・ We are all heart eyes 😍 for this little one in our toddler Heart Strong stripped sleeve shirt. 👉 Tag a friend below who has a little one and would look extra cute in our toddler shirts too! * * * * * #heartstrong #inspiration #chdaware #charity #giveback #nonprofit #chdwarrior #congenitalheartdisease #congenitalheartdefect #heartwarrior #1in100 #fashiongram #OOTD #whatiwore #apparel #heartonmysleeve #dogood #foracause #giftsthatgive #shopforacause

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archer_and_his_mummy

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lindsayalano

My PLE symptoms started showing up a little over a year ago and ever since then, PLE has continued to kick my booty. There were months of unanswered questions, day long infusions, tears, confusion and frustration. Nothing was changing for the better, but then we moved to Maryland! • My new cardiologist wanted to tackle my PLE issue with an increase in meds. Sooooo I’ve been following doctors orders for two months and..... I am ecstatic to share that my recent lab results show that my albumin level (in relation to PLE) is a 3.9!!!! You all, for over a year, my albumin level NEVER got above 3.0. It usually would stay around 2.6-2.8. • Now what does this even mean? Albumin is a type of protein in your body. The acceptable/healthy range is 3.5-5.5. When you are below a 3.5 it can become dangerous in the sense of malnutrition, inflammation etc. Essentially, your body can not survive without a stable albumin range. • I know that my PLE can take a turn at any point but I am extremely grateful for my 3.9!!...and about those weird symptoms of water retention yesterday, they totally went away!! 🙌🏻

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honestmormonmama

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4ever_strong_ray2.9.17

Looking good in her pink and white!!💗🎀💗I just realized her feeding tube was under her shirt🤦🏾‍♀️ That’s why my child was trying to fuss😂😂🤣She DO NOT play already💅🏾 #inspirationalquotes #inspirational #biggirl #relaxing #chilling # outdoorsy #chd #chdwarrior #heartdiseaseawareness #complexheartdefect #hrhs #tof #dorv #proudmom #cpmom #insta #instacutie #instatoddler #inspirationalquotes #cpmom💚 #strongwomen #staystrong #keepgoing #keepfighting #mygirl #biggirl #oneofblessings #miraclesfromheaven #destinedforgreatness #destined

0

southernsnippets

This girl has been a trooper today! Including an endocrinology check up where they decided to take what looked like a pint of blood 💉😩 Yesterday was Turner Syndrome Awareness Day 💕 I had never heard of it until Ella was diagnosed at age 4. Only 1% of girls with TS even make it to to delivery, so these girls are born fighters! She has a few challenges including being a heart warrior but nothing to big for God to handle! I love the encouragement I continue to receive and see from other TS mamas, so hopefully our journey can help any other mom beginning their journey! 🦋💕 . . . . . . #miraclechild #turnersyndrome #turnersyndromeawareness #fighter #chdwarrior #chd #chdprincess #tssus #momlife #momblog #genetics #motherdaughter #miracle #brave #bravegirl #ts #childrenshospital #daughter #mygirl #franklintn #nashvillemom

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leebenjam

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the.busy.babywearer

The last 2 weeks have been a whirlwind of stress and chaos. I've held it together pretty well thanks to the support of my husband, friends, family, and God. But breakdowns have to happen. And today has been one of those times. But tears are cathartic. Babywearing is healing. And snuggling this girl close is just what I need today. #itsoktocry #tearsarehealing #babywearingheals #snugglethemclose #wearthemclose #closeenoughtokiss #ringsling #longweek #chdwarrior #chd #HeartWarrior #babywearing #babywearingmama #babywearersofinstagram

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magliobydesign

0

jsinclairandtskye

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heatherdettmann

Happy 1st Birthday to this courageous little warrior. No matter what comes your way you never stop smiling or busting out the killer dance moves. You are all things joy and light and your aunt loves you to the moon and back ❤️✨

4

the_chd_life

DAY TWENTY TWO. TIME Sometimes CHD patients feel like time isn’t on their side. Others find that time stands still. Waiting. Waiting. Waiting. For appointments for operations. For life. Lots of people ask me about staying positive while in the mists of AF and hospitals and appointments. I’m not sure to be honest I don’t really think about it. I like to think that time is on our side. We’ve overcome so many things. Time is actually our biggest cheerleader because everyday we get more of it. #superbossday #heartkids #chdawarenessphotochallenge #chdwarrior #1in100 #chdsurvivor #arrhythmia #time #thebhf #thankyou #thechdlife #chd #chdwarrior #chdsurvivor #chdbaby #achd #ablation #chdlife #1in100 #chdawareness #chdaware

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rebellespiritfitness

Ugh. Moving. I didn’t post yesterday! It was my active rest day, so no workout, just packing. I fasted, ate and cried a lot. Seriously 😳 middle little and I had an audiology appointment and we learned she lost a significant amount of hearing within 5 weeks. 😭 She has had her hearing aids for 5 weeks, so I guess I thought it was getting better or at least, not getting worse, but no, my poor baby has progressive hearing loss. They can’t tell us anything, they don’t know if it will stop or if it will get much worse. Sometimes being a mom of a kid with an undiagnosed syndrome is sooo hard. We have no answers or roadmaps. We don’t know what the future holds and sometimes as a mom, you just can’t take anymore. I have only lost it, really lost it twice, once when we were told she had a heart defect and a possible syndrome and yesterday. I wish I could take this away for her. I wish I could bear this burden for her. I yearn for answers, but I know my girl is tough as nails and can handle anything thrown her way 💕 💜👧🏼 I Today, I worked out, walked and ate a 1000 calorie brunch of #bpc meatballs, eggs, flackers and cream cheese. This will be one of two meals today.....back to packing. Happy Friday 😘

8

pcha_chd

Continuing our celebration of all the great Heart Dads out there! Rarely in the spotlight, CHD dads conquer CHD along side us and are often unsung in the fight. Today, meet Jared, Heart Dad to Katherine <3 #conqueringchd #chd #CHDAwareness #heartdad #heartwarrior #giveknowledge #giveavoice #givehope #give #nonprofit #education #support #research #awareness #advocacy #1in100 #chdcare4life #chdwarrior #fathersday #dadquotes

1

abigailandthefuture

So I was panicking a bit earlier, about how today would go because I had no idea, we’d not really been given any information about it, just the date, time and place. Turns out we were missing a whole bit of information on the procedure which meant Rohan was supposed to be starved for four hours before hand... I did wonder whether it would be like it is with a GA and really I should’ve probably done some research into how sedation happens and prepared ourselves a little better. So because he’d eaten about an hour before, they couldn’t do the sedation. I felt a bit silly, but at the same time is wasn’t really our fault that we didn’t get all the information! But thankfully his cardiac consultant decided to try and do the echo anyway whilst he was awake and we were armed with lots of distractions. I also managed to ask a few more questions afterwards and get things explained a little more, so now I feel clearer on it all, because last time it didn’t really go in. Rob also joined me after sports day so it was good to be able to have someone else there to listen and help too. So we’re home, Rohan is fine and didn’t have anything other than the echo, got a bit grumpy about not being able to eat whilst we waited on a decision but he got over it. His consultant managed to get enough images that she was happy with so we (hopefully!) don’t need to go back for a rescheduled sedation. I’ll talk a little separately about the results and moving forward soon! Thanks as always for all the well wishes, it’s so appreciated!

9

aheartsomejourney

Not the greatest picture ever but I'm excited that Braveheart finally fits 0-6 month shoes... At almost 1 year old lol. He's just suddenly growing like crazy. It's so strange and yet exciting to watch after he's been below the the growth curve for so long. These @elkkids shoes were gifted to him by his grandma before he was even born. So cute and they seem super comfy. . . . . #aheartsomejourney #babyboyfashion #babyshoes #givemeallthebabyshoes #elkkids #mblogger #mumblog #mommyblogger #littleandbrave #littlemiracle #chdbaby #chdwarrior #growingbaby

4

dark_angel_anarchist

I'll tell you a little secret, but don't tell your daddy....I took my time naming you cos I wanted to see my family name on your ankle band for as long as possible... ♡ I love you, sweet baby boy. Always and forever ♡ #FifteenWeeksSinceYouLeftUs #LookAtThoseFeet #FridaysAreHard #chdawareness #chdaware #chdwarrior #chd #congenitalheartdefect #pulmonaryatresia #atrialseptaldefect #hrhs #hypoplasticrightheartsyndrome #hypoplasticrightheartsyndromeawareness #heartmom #heartache #heartbroken #heartwarrior #heartangel #angel #baby #newborn #grief #love #mabonengheartandlungs #linkinbio I shared the story link in my bio.

3

nurse_cricket_crafts

1

nurse_cricket_crafts

0

nurse_cricket_crafts

0

nurse_cricket_crafts

1

jaxtonheartninja

Hopefully heading to Cincy Monday! My future is so bright I have to wear shades. #heartwarrior #jaxtonheartninja #chdwarrior #chdawareness #heartwarrior #hearthero

3

theohhf

No matter how small the heart warrior, their strength is unbelievable. Even the smallest foot can change the lives of everyone around. ❤️thank you @meeteverlyjo for being so open with your daughters story! You’re strength is amazing 💪🏼the heart community loves you and you’re not alone❤️👼🏼 . . #spreadawareness #spreadlove #keepgoing #chd #chdwarrior #chdangel #chdawareness #love #lovealwayswins #heart

0

hannahsudlow_

Happy Friday, friends! Hope your weekend is as relaxing as Evelyn’s ride 😆

2

theohhf

These surgeries and other preventions are expensive and hard on families. By funding new research we can help find new and better surgeries and preventions that can save lives. Click the 🔗in our bio to help us continue funding research and sending hospital bags to families that need some Ollie love ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️ . . #spreadlove #spreadawareness #chd #chdawareness #chd #chdwarrior #heart #heartwarriors #love #ohhf

0

mimisopenheart

I see some new faces and figured a #fridayintroductions would be fun to kick off the weekend! I’m Mary Beth, but my nieces and nephew renamed me to Mimi and that will forever be imprinted on my heart😭😍. Sharing 5 things you may not know about me:) 1. I have a twin brother. And no, we are not identical:) I really do get asked that and try not to do this🤦🏼‍♀️ 2. I lived in a 14th century monastery in Gaming, Austria for 4 months when studying abroad during my junior year in college. 3. I can easily watch and keep safe 15 toddlers in a room by myself, but public speaking scares the crap out of me. 4. I’m ALMOST done with my Master’s in Education! I’ll be finished August 15th and cannot wait to close that chapter in life. 5. When I really like a song or an album, it’s on repeat for months🤷🏼‍♀️ Do we have anything in common? . . . . #mimisopenheart #fridayintroductions #friday #openheartsurgerysurvivor #chronicillness #chdpatient #chdwarrior #auntie #invisibleillness #chdawareness #lifestyleblogger #gradstudent #zipperclub #blogger #auntielife #auntiehood #1in100 #gradschool #thankful #heartdisease #heartwarrior

15

extra_exton

I think it’s safe to say someone lovessss his new book ! @cedarsstory thank you so much for creating a book that is not only super cute and fun to read , but that also includes our kids with that little something extra !!! He pointed to all the children’s eyes on every page , it melted my heart ! #downonthefarmbook #extraexton #downsyndrome #downrightperfect #homiewithanextrachromie #t21 #homeventilatorclub #trachandvent #tubie #chdwarrior #mendedheart #myhero #myfavginger #specialneedsparents #theluckyfew #readingtime📖

3

thelifeofchaceelijah

0

savetheheartbeat

Our Heart Warrior of the Week is Alexandra Rolland, an adult CHDer with a very unique story – she wasn’t diagnosed with her defect until she was 19 years old. We talked with Alexandra about CHD, healthcare, and advocating for adults living with congenital heart disease. Check out the link in our bio to see what she had to say! . #CHD #CHDawareness #BAV #HeartWarrioroftheWeek #CHDWarrior #HeartWarrior #ACHA

14

1inamillieann

Two years ago today I was snuggling a sweet sleeping baby in the Neonatal ICU. Today I'm snuggling a sweet toddler (don't let Porter here you call her a baby, she's a toddler!) in the Pediatric ICU. She's doing good without her breathing tube and they have started to lower the amount of air flow they're giving her. She was back up to full feeds, but she was refluxing them up and out the leak in her esophagus repair so we have stopped them and are going that will allow the leak to heal more quickly. That means she will be back to getting all her nutrition through an IV. Hopefully one step back will lead to two steps forward... #1inamillieann #greatesophagusrepair2018 #esophagealatresia #eatef #dsawareness #theluckyfew #nothingdownaboutit #chdwarrior

0

blairmiller11

Your smile melts my heart ❤️ #brysonlee #chdwarrior #momofboys

0

janinehoped

Finally....after waiting 6 months after her fitting (it was all worth it)...here’s her NEW Ki Mobility Flip XP Tilt Wheelchair!! 😁 ✨✨✨✨✨✨ As you could probably tell (if you look closer), she grew in the last 6 months....so we are getting a bigger seat & back cushion. . . . . #trachkids #pulmonaryhypertension #heartbaby #chdwarrior #gtube #specialneeds #developmentaldelay #hipdisplasia #scolosis #armybaby #armystrong #militaryfamilies #kimobility #kimobilityflip #adaptivewheelchair #adaptivedevice #adaptivemobility

2

emilysheart1

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jsinclairandtskye

5

emlfoundation

Hey there! What's that one thing that keeps coming back to you, that you can't take your mind off, that you just have to give a go? Start today, commit to doing ONE thing that gets you closer to that dream. Just GO FOR IT! 🙌🏽

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albieslittlebrokenheart

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fourheartsshop

We only have 3 LEFT of our super comfy, worn-in pull over sweaters. Size XS - perfect for our little tweensters. 🤗 Shop easily by tapping the link in bio. * * * * * #heartstrong #inspiration #chdaware #charity #giveback #nonprofit #chdwarrior #congenitalheartdisease #congenitalheartdefect #heartwarrior #1in100 #fashiongram #OOTD #whatiwore #apparel #heartonmysleeve #dogood #foracause #giftsthatgive #shopforacause

6

jodielhenderson

Not quite sure how this is comfortable to be honest?! #catnaps #dangernap #love #baby #heartbaby #chdwarrior #myheartwarrior

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littleflowerprojects

We are so happy to see Ying putting on some weight! This little chd warrior princess has had a sluggish road to recovery since her open heart surgery, but she is making progress, and growing bigger and stronger! - #chinalittleflower #chinaadoption #chinaorphans #orphancare #adoption #chdwarrior #chdawareness #zipperclub #growbabygrow #lookwhatlovecando

1

lennonslovingheart

Lennon was in great spirits this morning ! We got all of our lovins in. & Michael and I got to walk her back to the OR. Please continue to pray through out the day... she’ll probably be back there about 5-7 hours. #lennonslovingheart #openheartsurgeryround2 #lennonjames #chdwarrior #cvicu #openheartsurgery #houston #texaschildrensheartcenter

17

ellemullikin

Just a boy and his dog 💙🐶 . . Out of the 3 puppers, Gordon is the one that takes most to Jackson. He was the one we were most worried about, not only because he’s a big behemoth of a dog, he takes giving love and affection a tad too far. He surprised us the most with his patience and just needing to be around his furless baby brother. Now that Jackson is so active and sometimes not that aware of his surroundings, Gordon just lays there and allows him to do as he pleases. He’s a good pupper 💙

2

reneerotondella

My special little boy ~ I feel a lot like sharing about my little boy and what I we went through and how it made us stronger as a family ~ finding out we were having a little boy we where over the moon our family was finally completed ~ but hearing those words that day will always daunt me THEiR IS SOMETHING WRONG WITH YOUR BABIES HEART we suspect it's TGA Transposition of the great arteries is a congenital (present at birth) heart defect. ... In transposition of the great arteries, the aorta is connected to the right ventricle, and the pulmonary artery is connected to the left ventricle — the opposite of a normal heart's anatomy ~ which means that he would need open heart surgery as soon as he was born ~ well did the world come crashing down that day ... many tears where shed for the next 2 weeks waiting for a appointment at king Edward hospital with the cardiologist ~ 2 weeks later we had our appointment only to confirm that our little boy had cctga Congenitally corrected transposition of the great arteries (CCTGA) is a rare heart defect in which the heart's lower half is reversed. It is also called L-TGA.~ which was the best news we could have received as this meant our little boy didn't need open heart surgery we would be on a wait and see plan ~ so we were ready to start out journey with our little heart warrior with regular checkups throughout my pregnancy , scans and things going to plan our little boy was born on the 14-05-2018 ~ he is doing so well had his 6 week checkup and is doing amazing ~ no heart surgery ~ living a normal life ~ not been seen for another 6 months the drs are very pleased with his progress his putting on weight like a trouper with mummies milk we are very blessed ... with our beautiful heart warrior ❤️❤️✨✨ #heartwarrior #cctga #congenitalheartdefect #strongboy #chdwarrior #chdmum #chdawareness #chd

5

mightymicahsheart

He just headed into the OR for his bronchoscopy. He’s so tough. Also, I hate sending him in there. Never gets easier. #mightymicah #tracheobronchomalacia #99respiratoryproblems #chdwarrior

6

leiaamiller

Big day! Leo is having his second open heart surgery today. ❤️🦁💪🏼

5

ahakansas

Kendra Plumley didn’t spend her childhood running around with other kids. Instead, she spent most of her time indoors to protect her new heart. Today, the 29-year-old is making up for lost time by embracing all that life has to offer. “I know that I’m a miracle." Read her story at http://spr.ly/6171Dgabh. . . . #survivor #survivors #newlife #CHD #CHDWarrior #newme #family #love #inspire #inspiration #healthy #health #healthylifestyle #healthychoices #healthychoice #heart #dailymotivation #inspireothers #empower #mindset #love #positivemindset

1

abbykmend

A very happy Mother’s Day eve for me! In a whirlwind of a week we found out Lawson had congenital heart defects and on Wednesday he underwent open heart surgery. Today he was extubated. He still has more recovery ahead but we are just so happy to be able to hold him again. To fill my heart more, I am spending the night with Logan tonight for the first time in over a week. #themendenhallboys #chdwarrior #coarctationoftheaorta #vsd #zipperclub

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