Penelope (Penny) is our #chdweeklywarrior this week. Penny’s story is a little different in the sense that she wasn’t diagnosed with CHD until recently. Her heart has been working on overtime for 16 months to sustain her life until she started getting sick. While she was in the hospital getting treated for RSV, they diagnosed her with 2 ASDs, 1 large VSD, PDA, and Pulmonary Hypertension. .
She will be getting open heart surgery this Tuesday to repair the 3 holes in her heart, hoping that will make up for the other diagnosis. Please remember Penny and her family in your prayers! .
#findacure #heartbaby #chd #chdawareness #awareness #1in100 #toomany #openheartsurgery #heartwarrior #zipperclub #primarychildrenshospital

Weekends with Ro 🧡🍑👶🏼🍑🧡 she’s starting to fit her 9-12m clothes and it’s making me giddy! Grow baby, grow! #openheartsurgery #AuroraRoslyn

We made it to the hotel! Penelope’s eczema flared up really bad. But she’s happy to be out of the car! ♥️♥️ #penelopeann #openheartsurgery #chdfamily #heartrepair #sweetprincess #saltlakecity #primarychildrenshospital

Daddy’s boy

Heaven gained the most beautiful angel today. I had Kamila’s sister give her a kiss from me before she passed through the veil. So much love for this sweet family. Please remember them in your prayers. .

What a difference a year makes! 5/19/18 marked 365 days since #marvelousmarcie had her life saving, huge, amazing, terrifying, and miraculous surgery. Dave and I have been remembering how it felt to send our sweet baby girl for open heart surgery all day today. We told her how proud of her we are, how much we love her, and how thankful we are that she survived. Not only did she survive, she thrived! She continues to thrive every minute of every day! How does so much happiness fit into one heart? She's our joy, our light, our smiles, our everything. Truly. We love you Marcella Ruth, more than we could possibly explain. We are thankful for your life, your strength, and your courage. We are so thankful that you are here. The memories of your surgery and especially the recovery seem like a terrible, horrible dream. There are moments, both good and bad, we will never forget. More importantly though, you are our daughter forever and ever........and there ain't nothing you can do about it! 😂 we love you Marcie Pants! #hearttoddler #heartwarrior #mendiversary #heartiversary #openheartsurgery #chdawareness @savetheheartbeat @vumcchildren

Being at #stayathomemom is something I knew that I always wanted to be able to do for my kids. It is one of the reasons that I started my own business at age 26. A business that I am able to do from home, or anywhere in the world, with an internet connection.
I knew that 4 years ago, at 26, that kids were not in the immediate future, because Brian and I had only been dating for 3 months when I approached my coach and asked her about this coaching thing I saw her doing and having such success with. I distinctively remember telling her that I loved everything about what she told me and what coaches stood for, but I'll come back to her in a few years when I was ready to quit my full time job at a Cat Scan technologist to stay home with my future kids. And she said "don't wait, start now!"...and then it all clicked and it made total sense
Now I have a thriving business. I get to work with my best friends. I've made new life-long friends. I've gotten to travel the US and to the United Kingdom...and I know that when the time does come for having kids...that I will be there for all the firsts. I will not be having to miss a thing. I will not be stressing about the costs of day care but rather I will be able to stay home and raise my babies myself just like my mom was able to do for me and still be able to run my business on my terms. And I will still be able to contribute to our family so that not all of that stress is on Brian.
And until that time comes...I get to be a #StayAtHomeFurMom to these two!

Because having an open heart is about more than just cardiac health. There was a time not so long ago that I thought I would never be able to bend this deeply ever again. Keeping an open mind and heart has never been easy and giving up expectations has been one of the hardest things I’ve ever had to do. It’s the practice of yoga on and off the mat ❤️💔❤️
#openheart #backbend #progress #urdvadhanurasana #openheartsurgery #cardiachealth #heartdisease #chdawareness #yoga #yogaeverydamnday #yogaoffthemat

January 7th we celebrate the day Shiloh was brought into the world. May 21st we celebrate the second chance Shiloh was given. Celebrated a day early with balloons, cake, and tacos. Happy third heart day my dear. ❤️❤️❤️ #openheartsurgery #heartwarrior #downsyndrome #nothingdownaboutit #toddlersofinstagram #happyheartday

I am officially twelve weeks post op! It's crazy to look at this picture, and compare it to my first post op ones. Recovery went so well! I had very minimal pain, got my strength back pretty quick. Thursday I have my final surgeons meeting, and then I'm free! Thank you all so much for your continued love and support! It means the world to me!

#chronicillness #heartsurgery #raredisease #rarediseaseawarness #medicallyinteresting  #bodytrophies #defytheodds #fightforacure #fightforthecause  #kdheartwarrior  #openheartsurgery #sternotomyscar #undiagnosable #warrior #openheartsurgerysurvivor #survivor #pacemaker

Dear Ethan- Your joy was contagious. This is how I remember you best. Not the illness, not the heart disease. But this. Pure joy in living life fully. And going fast on boats:-) Happy 13th Birthday to my my firstborn. You continue to give me great gifts. I miss you so. This morning I woke up wondering how we’d celebrate today, what friends you’d want to hang out with and what technology you’d be into now. I’m so proud to be your mom. You make me brave. Everyday. Thank you for coming to earth and for turning life upside down. You’ve made us better people with bigger hearts. I’m deeply thankful and I miss you. I love you with all I am. Keep showing me the way. ❤️

It’s been 1 month and 10 days of being hospitalized... I can’t catch a break and I’m going stir crazy in here by myself it’s been 1 month since my heart surgery and I sit here trying to convince myself that it was all worth it. Elephant charm bracelet not doing its job and can’t seem to eat a whole meal without feeling nauseous during or after.Don’t know how strong I can get in here not doing much of anything. Puzzles , reading , sketching, sleeping....
#openheartsurgery #openchestsurgery #stircrazy #bored #hungry #sunday #elephants #luckycharms #puzzles #sleeping #mountsinai #miamibeach #girlswithtattoos #girlswithpiercings #lupuswarrior #lupusnephritis #sle #rheumatoidarthritis #renalfailure #dialysispatient

Today our family is celebrating our little heart warrior on his 10 year anniversary from open heart surgery. This day 10 years ago our world stood still as we handed him over to a team of doctors to repair his tiny heart. We will always remember the courage he had on this day and the love and support of all our friends and family.
We are so very proud of the young man he has become and the incredible strength, perseverance and kindness that he always exhibits!
#heartwarrior #survivor #chd #leakyvalves #subaorticstenosis #holeinheart #arrythmia #openheartsurgery #faith #determination #survivor #nevertakeadayforgranted❤️

I’m not one for a soppy post but I feel In this case there can be an exception! So it’s done! Day 4 after surgery and starting to feel a lot better. Hoping to be discharged in next few days 🤞 It has certainly been a challenge and am sure the road ahead to recovery is long but I couldn’t have done it without my husband, family and friends 💕 #openheartsurgery #heartsurgerysurvivor #mitralvalveprolapse #mitralvalverepair

Tomorrow I’ll be wearing red for Emily. ❤️ #Repost @emilysheart1
In 23 hours, her heart will stop beating. It will stop beating long enough to allow her surgeons to perform their magic. A man made machine will act as her heart for 5 hours.
I can only imagine it will feel as if my heart is not beating either. God please keep me strong for her. 🙏🏼💔 #GoRedForEmily #chdmom #chd #chdsucks #chdwarrior #chdawareness #downsyndromelove #downsyndrome #theluckyfew #downsyndromeawareness #downsyndromebaby #openheart #openheartsurgery #t21 #avcanal #mitralvalve @savetheheartbeat @lovewhatmatters @scarymommy @special_needs_siblings

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