Keep your head up. Take this on as something that is making you and your baby stronger in the end. Right now, your babies are caterpillars, but they will get their wings and become butterflies. When Quinn has her butterfly moment, and we go home, it’s going to be amazing! I’m looking forward to that.

Alexa is a “spicy,” sweet, fun, determined, and loving little girl. It is so fun to see this personality blossom, knowing that it had a big part of her drive/success in her NICU days. She currently goes to preschool and loves it!

Looking forward to the future, Elijah has a long road ahead of him for healing and growing. He's already made it through his diaphragm repair stage, so his next step is just to see how he does as he heals.

2020 has been a year like no other. Having a CDH baby in the middle of a global pandemic sounds like a riveting fiction novel. God works in mysterious ways, and this journey of a lifetime has challenged our whole family to reimagine what’s possible in life.

My son was born with Congenital Diaphragmatic Hernia on the Right side. We had no idea of his condition until he was born.

But in this first year of life, if there is anything Jax has proven, it’s that he is a damn survivor. He has and continues to beat the odds and he proves everyone wrong ALL THE TIME. Watching him succeed has been so humbling, so inspiring, and has encouraged me to have faith in a tiny little human.

Briella was an undiagnosed right sided Congenital Diaphragmatic Hernia (CDH) baby. I had her at 37 weeks and I had her in a small hospital and she was airlifted to Levine’s Children’s Hospital.

It has been a roller coaster ride for us but never will i regret going on this journey with my warrior. This whole CDH journey has showed me a different perspective of parenting.

The doctors told us if they had to remove Rakari from the machine before he was ready to get off, it would be a chance of him passing. But he didn’t. He’s a fighter, and he got off ECMO December 21, 2018.

I was given the option of sending him with a 5% chance of survival and risk him dying alone or I could hold him while he passed. I had to send him, it was never an option for him to die.

My life hasn't been easy as a CDH survivor, but I am a professional photographer, vocalist, dancer, and petite model, and I feel incredibly fortunate to be on this earth and to be able to share my gifts with the world!

Friday morning I got the call from Joy! “We’re coming to get Jackson.” Dr. Kays decided to make the trip to Baltimore at the tail end of a nor’easter to transport my critical baby on ECMO back to JHACH.

A parent’s worst nightmare is hearing something is wrong with their child. Our sweet unborn baby had been diagnosed with a Congenital Diaphragmatic Hernia (CDH). Casey and I had never heard of this before.

Jameson only needed a feeding tube for a week at home and has since continued to blow many doctors away with his amazing progress! He will soon be celebrating his 2nd birthday. Jameson has been and continues to be the light of our lives.

I don’t remember much about our conversation except for that she asked me what Charly’s name was. She asked if we had other kids, how old, what her name was. She asked how long we’d been married. We were people to her. Not another opportunity to experiment. We scheduled a call with Dr. Kays within a few days and spoke with him for over an hour.

What was supposed to take 3-4 hours turned into about a 10-hour surgery. Dr. Kays had said in his years of experience, he had never had to put a baby on ECMO in the middle of surgery, and he had never encountered anything like her diaphragm and her other anatomical abnormalities that she had.

She has given us new experiences, precious friendships, and a new perspective on how precious life is. And Eleanor’s unwavering smile and strength throughout her fight has been nothing short of inspiring. She truly is my tiny hero.

Emma is now 15 years old and a Sophomore in High School. She is doing extremely well all around! She plays on her high school’s JV tennis team in the fall and plays indoor tennis in the winter.

You are never prepared for the "I'm sorry your baby has something wrong with her," especially after having a normal, healthy 14-month-old baby boy. But we couldn't be more proud of our baby girl. She is still making strides and already laughing and rolling over.

I set off on a journey with my mother to find someone willing to help my daughter.