#chdsucks

MOST RECENT

Escaping the hospital room for a bit with Mommy and Daddy. Isn't God Amazing! We can do all things through God and right here this is his proof that the power in prayer works and everything is in his time and not ours.
Thank you God for another day with our #bravelittlewarrior.
#pulmonaryveinstenosis #VSD #chd #Chdawareness #pulmonaryveins #rare #prayer #love #life #photooftheday #instababy #Bravelittewarrior #happiness #strong #strength #mamaslittlebulldog #CHOAEgleston #mariclesdohappen #cure #courageous #beattheodds #chdsucks #mightywarrior #pvssucks #heartsuperhero #heartstrong #heart #Georgia
https://www.facebook.com/PrayersforKaspian/

God is Amazing!
God is listening to all our prayers. Look who's off their Oxygen, laughing and smiling.
Our Amazing BraveLittleWarrior Kaspian.
Thank you everyone for their thoughts, prayers and shares. An thank you God for another day with our sweet boy Kas.
#pulmonaryveinstenosis #VSD #chd #Chdawareness #pulmonaryveins #rare #prayer #love #life #photooftheday #instababy #Bravelittewarrior #happiness #strong #strength #mamaslittlebulldog #laughter #powerinprayer #CHOAEgleston #mariclesdohappen #cure #courageous #beattheodds #chdsucks #mightywarrior #pvssucks #heartsuperhero #heartstrong #heart #Georgia
https://www.facebook.com/PrayersforKaspian

Breathing tube came out today! Margaret hasn’t been awake much today and the team is working to find a balance between sedation and pain meds. It’s hard. They are cautious because they know margarets history but she’s too sedated at this point.
Unfortunately after being extubated she has now developed some gunk in her lung so she got put in cpap and and will get some nebs through that as well. She has been retracting and looking like breathing was a lot of work so hopefully this adjustment will help her!
#babysteps #mightymargaret #heartwarrior #hearthero #chdsucks #chd #chdawareness #openheartsurgery #ohs #heartsurgery #zipperclub #tetralogyoffallot #tof #pulmonaryatresia #vsd #mapcas #recovery #chdwarrior

‘Show me your special heart, Bubbie’ 😍
I will always let him know how beautiful & amazing his scars are. Scars tell a specific story you’ve been through, but someone else hasn’t. Scars are unique.
#kingstonjudedorn #theheartofkings #chdsucks #hisscarsarebeautiful

Tomorrow will be 9 weeks since our precious little angel left us, but it’s also our first opportunity to help a cause that’s near and dear to us. We will be at @burrisvalley_ranch #tackettcreekchallenge selling #daxtynstrong stickers to raise money for #downsyndrome and #chd !!! We’re very thankful to be able to do this and we hope everyone comes out and we can sell all the stickers we have! #daxtynkai #trisomy21 #chdsucks #chdwarrior #angelbaby #heartwarrior #hearthero #bornforgreatness #stillmakinganimpact #legacy #homiewithanextrachromie

Everything has been hitting me like a ton of bricks today and I’d do absolutely anything to have my baby boy back. 💔😕😭 this isn’t fair.. none of it. #daxtynkai #imissyou #mybabyboy #chdsucks

PSA! We are featuring a few weekly warriors closer together in next or so, due to surgeries coming up! …............................................................................ Meet Charlotte, our #chdweeklywarrior. She was born 3/15/18 and was diagnosed with Tetralogy of Fallot with Absent Pulmonary Valve. She has suffered so many complications already, her family asks that you remember her in your prayers as she gets another surgery Tuesday, May 29th. .
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🛎 THIS WAS A FACEBOOK UPDATE FROM LAST NIGHT!🛎
“Charlotte was anemic this morning. There was some rusty discharge in her diaper. They tested it and it did have blood in it. She had a blood transfusion this morning. Her feeds have been stopped. She is on antibiotics again for 7 days. If in fact her bowels are not getting enough oxygen, causing the bleeding, the only thing to fix this is repairing her heart. Her xrays look good, so surgery will come by every morning and check on her. As far as her heart surgery goes, we are still scheduled for May 29th as long as she is stable and has no further issues.
Please pray for banana. We need this heart surgery. We need her to heal, and want her to come home.
I love this litte girl. shes my entire world.”
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These #CHD babies have to endure so much and they need our help! You can follow along with Charlotte’s story on Facebook. She has a group called ‘Prayers For Baby Charlotte’ that pops right up when you search for it. ⠀⠀

3 6 5 three hundred and sixty five days = one YEAR ! We are gonna CELEBRATE the victory you better believe we are!

Not all warriors wear their scares on the outside.
Some wear their scares on the inside.
One year ago today, May 24th 2017 I will never forget, my anxiety was at an all time high.
I felt like I was gonna loose my insides, from being so worked up.
It was the second time in less then six months that I was placing you in surgeons hands. The first time I hadn’t had a chance to even digest that your heart was sick and this would be a life long journey I had no clue about. I had held you maybe 20 minutes before they took you away, and the next time I would hold you would be after your 1st heart surgery. But this time reality had set in we had our “normal” maybe not what others would call “normal” but we had created our new norm. They had warned me you’d need more done, but I don’t think any warning is enough to prepare you mentally when you have a child with congenital heart disease. Today we celebrate life, we celebrate that there’s interventions that save lives we celebrate one year post op ! I realize there are heart family’s out there fighting way bigger battles but today we are celebrating our battle. There may not be a scare to show for it on the outside but if you pulled Rios heart out too look at it, you would see the battle being fought in the form of a 2 leaflet valve working over time. A valve that’s thick, rubbery and has minimal leakage that’s been ballooned by 4 different balloons in a cath lab. You would see a right ventricle that is smaller then a healthy right ventricle that’s more muscular then should be you’d find a hole up by the right atrium.. that’s Rios scar. Invisible to the outside eye yet worthy enough to be called warrior.
Happy heart anniversary my sweet warrior
With love your momma. ♥️💙 . #cathlabs #balloonvalvuplasty #ballooning #CHDsucks #heartanniversary #valveproblems #criticalpulmonaryvalvestenosis #Heartwarrior
#Riostrong #wefight4Rio

As long as I'm alive you'll never have to fight alone 💪👊💘 #yourfightismyfight #chdsucks #amotherslove #mywarrior #mymiraclebaby #myhearthero #hisheartrhythm #sentimentaltattoo

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