I remember thinking, “Oh, just a hernia? A hernia’s not that bad.” But of course later that night, after a good bit of googling, we discovered that CDH is not just a hernia.

We truly believe Lucy Jane is our little miracle, and we know that God has used her and her story to share His love to a lot of people.

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.

Jim Beau was on the ventilator for 13 days and on oxygen for about 30 days. Thankfully, Jim Beau was a model CDH patient. The nurses called him “the CDH baby who doesn’t know he is a CDH baby.”

At that moment, I did not care if my child was a boy or a girl; I didn’t care about my classroom; and I didn’t care how I was going to fit a baby into the mix. I was sad; I hurt, but I was going to fight. Julie did share with us we were having a boy, and Jon was so excited. His words were, “Yes! A football player.” My words, “I just want him to live.”

After 81 long days in the hospital, Noah was finally able to go home. He was on oxygen for 11 months, had surgery to correct relux at 9 months, heart surgery to repair an open PDA at 10 months, and lots of oral meds for the first year.

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.

Jude has continued to thrive through the years, doing great at school and even trying out soccer and swimming (the things we never imagined possible!) He is turning 12 next month and starting middle school this upcoming school year. We are so proud of him!

In eleven years, some of the memories from the NICU have faded. We have a reminder of Tug’s beginning of life through a scar that remains on his chest. However, the gift we have been given through Dr. Kays’ care is a son who is not afraid to be his own unique self.

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

As her strength and endurance built, she increased her feeding to the point that she no longer needed the feeding tube (which ran from her nose to her intestines). Her mommy and daddy are so proud of what a fighter she is and how determined she is to live!

We were very excited but also nervous about the health of our baby. It wasn’t our focus, but strangely enough, it was always in the back of our mind.

He’s 6 years old, has a blue belt in taekwondo, and enjoys swimming, singing and reading. We’ve lost count of the number of people that say there’s something special about him… but we know there is. He’s a CDH survivor.

She is now a healthy, happy, perfect 7-year-old. She's smart, kind, observant, and has a gentle soul. She is our miracle and our joy!

He also endured many complications during his 92-day NICU stay. At 7 days old, he had an intestinal perforation; at 3 weeks old, he suffered a pulmonary hemorrhage; and at 2 months old, he had a horrible infection. We know that it is because of God and the skills he has given Dr. Kays that we are able to enjoy our son and watch him grow, despite all the challenges he faced early on.

When we had Logan, our family became much larger than just the three of us. Going through this journey, the CDH community has been so supportive. They've become family.

Hazel had her repair surgery at 9 days old. Dr. Kays said her hole was huge. She had a full right lung and a nub for a left lung. He told us how Hazel really was a unique one. She ended up being bi-lateral, which is obviously the worst case, but had the best type of hernia to have a Morgagni hernia (an opening through the front instead of the back).

The CDH rollercoaster is rough, but you just have to keep your eyes on the prize: taking your baby home. After 134 days and having the Nissen procedure and a G-tube placed, she left the hospital on oxygen. One of the best parts? Her exit MRI showed no brain damage!

There is no protocol, and there are no timelines during this whole process. It’s a lot of sitting, waiting and monitoring. As a mom who has her life "planned to a T," this was very hard from me to understand.