Despite everything, Elliot is now an active, thriving little boy who will be 3 years old soon. This year, he even performed in his first dance concert, where he was so in his element and had no struggles keeping up with his peers.

The nurses and doctors were all shocked by Lincoln’s progress and called him an enigma because of how well he was doing. He learned to eat super well and was discharged a day after 32 days in the NICU. He is a happy but ornery 1-year-old and is the light in our lives!

Dierks has a large family who adores him as well: grandmas, aunts, and even his very special great-grandma, who prayed for him every day during his journey. We are incredibly thankful for the Children’s Hospital of Milwaukee team, Prevea OT, and all the love from his friends and family! 

At 5 months on the dot (153 days approximately), Teddy came home with an NJ tube and no oxygen. Tiny Hero was a lifeline for me during our NICU stay, and I’m so happy to share our story to encourage other CDH families!

Santiago is almost 6 months old. He is tachypneic at times, which was expected, with one lung being smaller than the other. I’m sure we have a long road ahead of us, especially with the cold season coming up, but we are so grateful to have our baby here with us. We are also grateful to everyone at the Children’s Hospital of Orange County NICU!

While this journey has looked so different than how we had originally pictured it, our journey with Owen has been a transformative blessing in disguise. We're now a resilient family, stronger than we ever thought possible. Our mission is to empower Owen to thrive and spread hope to families affected by CDH, proving that it's not a death sentence and that there is hope for these tiny warriors. 

When she was nearly two years old, she was thriving and had multiple follow-ups, all of which showed everything to be normal. Unfortunately, another X-ray and CT scan revealed another recurrence. Since her fourth repair, she has not experienced any issues and has recovered exceptionally well. We are incredibly proud of her. She has gone through so much and showed how strong she really is!

I didn’t have time to research or prepare myself for David’s diagnosis. I left the NICU under the impression that he would be a “normal” baby. When I finally felt ready to learn more about what CDH truly is, I discovered Tiny Hero. While hearing others’ stories has been emotional, it has also provided me with comfort, knowing that I am not alone.

Since being home, Grayson has thrived tremendously. He is completely off oxygen and has recently started eating 100% orally. Though he is smaller (1-2 percentile), he has met every milestone so far. Despite being given every reason to feel upset, he is one of the happiest babies you'll ever meet. He loves going on walks, cuddling, talking to people, and watching Mickey Mouse Clubhouse!

Going into my 20-week scan, I was completely unaware of what to expect. I even had additional follow-up scans because they couldn’t locate the liver. All the doctors cleared me and said everything looked good, but now I realize I was naïve and should have asked more questions. In hindsight, I would advise others to be curious—no question should feel too out of the ordinary.

Do not give up and never lose your faith. We are warriors of CDH. Thank you, Tiny Hero, for your grain of sand, you will help me to be closer to my family on my island of enchantment, Puerto Rico!

Kash acts like a baby who was never hospitalized for 2.5 months and was never on ECMO/intubated. We have a wonderful team and physician to thank as well as an amazing God who guided us throughout our entire journey. Kash has the devoted backing of family and friends “Kash’s Krew” who gave us unconditional love and support while being so far away from home!

Our family is so grateful for the Tiny Hero organization. We never would have learned that we could save our daughter if it weren't for the Facebook group with so many people recommending specialty hospitals.  Our daughter would not have made it if we had stayed in the state for her care!

I dove into hours of research on CDH and joined every support group, forum, and community I could find. The CDH support network from Tiny Hero became our beacon of hope, providing us with the knowledge we desperately needed!

I found Tiny Hero’s community on Facebook. I wrote my story and asked for stories of hope in return, and the members did not disappoint. I got overwhelmed by the response and copied all the stories and images into a document that I printed and carried with me everywhere. I read it so many times the pages got worn thin. It was a physical hope to hold on to.

Grayson has definitely pushed through many obstacles thrown his way, but he comes out even stronger each time! He will turn three this year, and every time I look at him, I can’t even believe what he’s been through and how far he has come! This journey has not been easy, but it has helped to know that there is a community of families out there to which you can relate!

Today, Zy is a happy, mostly healthy baby. He loves to play with his siblings, clap his hands, and climb on everything. He has mastered eating by mouth, crawling, pulling himself up to stand, and walking while holding onto something. For everything he has been through, he is the happiest baby we know, and we couldn’t be more blessed and in love!

Ellie loves spending time outside, swinging, reading, kicking everything in sight, and singing in the car. We wanted to write this story to give other families hope, especially those facing multiple diagnoses. CHD and genetic conditions on top of CDH can be complicated, but these babies are so strong. We are here to support everyone facing this scary diagnosis!

Amelia has not had it easy. But what I have found out through this journey is that she is not alone in her struggles. She is here with us. I can hold her, kiss her, rock her to sleep, and love her unconditionally every day. Being her mom is an honor, and I don’t take it lightly!

Nash is the toughest guy I know. He is so resilient and has shown everyone to not always look at statistics and blow them out of the water!