#chdawareness

MOST RECENT

The best smiles are captured when he’s at the park! 🌞
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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.
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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. 🤔
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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
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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! ⭐️
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Please check out my #etsy store heartmomming.etsy.com and follow @heart_momming_shop for store updates and product features. Stay tuned!
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#newmom #heartmom #babyboy #chd #tga #heartwarrior #momlife #creativeinspiration #illustrator #art #heartmomming #handmade

💔 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

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.
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#chdawareness #chdwarrior #medicalmama #heartbaby #honestlymothering
#simplymamahood
#momentsinmotherhood
#myhonestmotherhood
#parenthood_unveiled #findingthelightwitherinhensley
#ourwhimsicaldays
#littlefamiliesofig
#standstillmychild
#acupofmotherhood #littleandbrave #thingsiwanttoremember #littlefierceones #mytinymoments #honestmotherhood #thesincerestoryteller

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

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.

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 ❤
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#CHDLameeha #livingwithlameeha #livingwithCHD #CHDsurvivor #CHDwarriorprincess #1in100 #ZIPPERclubmember #scarsarebeautiful #heartwarrior
#gtubebaby #CHDawareness #withawarenessthereisgreaterresearch #withawarenesscomeschange #prayforLameeha

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

#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 .
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#scarsarebeautiful #scarsarebeautifulproject #openheartsurgery #chdawareness #chdwarrior #zipperclub #sweden #1in100 #invisibleillness #chronicillness #athlete ##rolemodel #invisibleillnessawareness

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!

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

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 ❤️

🎈6th Annual 5K Birthday Bash for Hayden's Heart Foundation 🎈
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Check out ALL the photos by going to photosesh.com under featured events.
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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. . .
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📸 (PhotoSesh credits go to Marc Gersh and Sean Jamar Rhinehart) 📸
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To contribute or participate in upcoming events, please visit haydensheart.org
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Photography Sponsored by BCB Community Bank.

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It’s about an INSIDE-out transformation. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
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#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

#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

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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