#HeartWarrior

Our girl is nearly 5 months old and continues to be asymptomatic! 🥹🙌🏻🫀 Her oxygen levels remain strong and as you can see by her adorable rolls 🥐 she hasn’t been struggling to eat. We won’t have to see the cardiologist for another 6 months unless symptoms start to arise. We are very aware that our biggest hurdle will come in the next month or so when she starts to eat solids. We’re praying she won’t struggle to swallow, but remaining faithful that God will be with us no matter the outcome. She lights up our world! I’ll never get over the gift that she is to all of us! ✨ #chd #heartwarrior #doubleaorticarch

Who caught the smile at the end? Told ya’ll she brings joy wherever she goes ✨ #cdls #cdlsawareness #CorneliadeLange #corneliadelangesyndrome #cdlsstrong #feedingtubeawareness #gtubebaby #gtube #tubie #tubiebaby #miraclebaby #chd #specialneeds #specialneedsmom #medicalmama #disabilityawareness #chdawareness #chdwarrior #heartmama #heartwarrior #reelsofinstagram #congenialheartdefect #disability #cleftpalate #girlmom #momlife #motherhoodreels #nicubaby #trachbaby

We just want to take our girl home❤️‍🩹 To be a family. To live in one place. To feel safe and complete and “normal”. Together. Every day is hard but it feels extra tender now. Coming up on our second Christmas in the hospital. Grateful that this one is “different” & not in the ICU but sad that we’re still here. Waiting for our call. Heartbroken for what that means. Already endless grateful for a “yes” that will change everything❤️‍🩹 #warriorgirlsloane #hearttransplant #heartwarrior #berlinheart #sickkids #organdonation #heartfailure #firsttimeparents #dilatedcardiomyopathy #sickkidsvs

5 things I’ve learnt this year living with congenital heart disease… Part 2 Looking fit doesn’t always mean being medically “well”. I think this is something people can find difficult to understand when they see me training, running, lifting weights or preparing for HYROX. I can be physically strong and still live with complex congenital heart disease. I can look healthy and still have hospital appointments, tests, worries and things happening behind the scenes that people don’t see. The two can exist at the same time. I’m incredibly proud of what my body is capable of — but I also have to respect everything it has been through and continues to deal with. Being physically strong and medically vulnerable can exist at the same time. ❤️ And I think that’s something I’m only really learning to understand myself. Part 3 coming soon 🫀 #CongenitalHeartDisease #CHD #CHDAwareness #HeartWarrior #Pacemaker MechanicalValve WomenWithoutLimits HYROXJourney

I don’t want heart failure to define me. But sometimes I forget that it does affect me. 🤍 I can be incredibly hard on myself for not training as much as I want to, for needing more recovery, or for comparing myself to people whose bodies simply aren’t fighting the same battle as mine, especially at the moment with people doing more and more on social media. And then I have to remind myself: I’m literally doing all of this with heart failure. I still ride my bike. I still run. I still train. I still work. I still set big goals and want to get stronger and fitter. I don’t want to stop challenging myself or use my health as a reason not to try. But there’s a difference between challenging my body and fighting against it. I literally find myself apologising on rides because I can’t produce huge power, sprint or push crazy watts. I feel guilty when I can’t spend as much time on the front as everyone else. But… at what cost? At what point does trying to prove I can keep up stop being brave and start being unfair to a body that is already working incredibly hard? I’m racing next weekend and, truthfully, I’m terrified. To everyone else on that start line it might simply be a race. For me, just getting to the finish line will be a huge feat. Because doing this with my condition isn’t ordinary. I need to remember that sometimes. Some days the win is a great session. Other days it’s recognising that my body is asking for rest and actually listening to it. My condition makes me an outlier in plenty of ways I never asked for. But maybe I’m an outlier for some pretty great reasons too. I’m still here. Still moving. Still showing up. Still choosing to see what my body can do rather than only what it can’t, and hopefully I’m promoting that to others too. I can be ambitious AND compassionate with myself. I can want more AND be incredibly proud of what I’m already doing. And whatever the numbers say and wherever I finish, getting myself out there is enough. Because being strong isn’t always about how hard you can push. Sometimes it’s knowing & appreciating when not to. 🤍 #HeartFailure #ChronicIllness #InvisibleIllnes

3 days to go until our half a heart warrior turns 16 💜✨ Our daughter was born with half a heart (HLHS), missing her left ventricle, so birthdays and milestones will always mean that little bit more to us. That’s why we’re making this countdown as magical as we can. What’s the best birthday surprise you’ve ever had? 🎁 Www.Youtube.Com/c/archeradventures #HalfAHeart #HLHS #birthdayadvent #birthdaycountdown #CHD

I’m proud of me and how far this heart of mine has gotten me through despite its trials and tribulations. God is good and so is my heart team. One day at a time! 🥹🤍 #heartfailure #heartdisease #aorticstenosis #ppcm #afib #cardiomyopathy #pacemaker #hearttransplant #tavr #ablation #bloodclot #watchman #mentalhealth #anxiety #fighter #Vanderbilt #MomTiktok #Anesthesia #HeartWarrior #lasix #tee #comeeatlunchwithme #hospitallife #propofol #heparin

I have 15 minutes to change the batteries on my heart ❤️. #BatteryPoweredHeart #LVADLife #HeartWarrior #15MinuteChallenge #ChargedUp #MechanicalHeart #LifeOnBatteries #HeartStrong #SurvivorStory #InvisibleIllness #HeartHealthJourney #PumpingLife #ModernMedicine #KeepGoing #GratefulHeart #StrongerEveryDay #BeatGoesOn #MotivationFromWithin #ResilientAF #JustADudeOnBatteries

I have had people reach out to me asking questions about Amelia’s Heart Surgery process, the whys, updates, etc… So I’ll be uploading some clips through this process; hopefully it helps people who may be in the same journey! The ‘WHY’ is a big one! ‘Just stay local’ Absolutely not! The local doctors who do not specialize in her heart defect were adamant that she would not survive. They took the easy answer instead of giving us statistics of all the amazing people in the world that are currently living with Ebstein’s Anomaly. #rareheartdefect #mayoclinic #openheartsurgery #downsyndrome #chd

Forever trusting you Lord! #heartfailure #heartdisease #aorticstenosis #ppcm #afib #cardiomyopathy #pacemaker #hearttransplant #tavr #ablation #bloodclot #watchman #mentalhealth #anxiety #fighter #mayohospital #Vanderbilt #DukeHospital #MomTiktok #KeepFighting #DontGiveUp #Anesthesia #HeartWarrior #trustinthelord

4 YEAR HEARTIVERSARY YALL!! 20 heart attacks 23 defibrillations 2 pace maker/defibrillators 1 stroke (lost half my vision) And One Beautiful Healthy Selflessly Donated Heart later! I’m on Bonus Day 1,461! #helphopelive #giftoflifealliance #baylorscottandwhitedallas #veteran #donatelifeamerica

Also, let me tell you about my God! Our heart warrior is 3 months old and I still battle wrapping my mind around what he went through in his first few weeks. He made nothing short of a miraculous recovery after his Artery Switch surgery. These heart babies are strong. The Lord is so close to children in need. The angels in the OR, the ushering of Gods power into his hospital room. My God showed up big and I’ll forever be in awe of that chapter of our lives. It’s reminded us how precious every day is. The treasure of life. How fragile it can be. But how close God is. #VSD #taussigbing #TGA #heartbaby #heartsurgery #heartsurgerysurvivor #CHD #chdawareness #chdwarrior #supernatural #angels #dorv