On day 323, we were discharged from the hospital...just a few days before Landon’s first Christmas! What a treat it was to spend Christmas together outside of the hospital. And on day 355, Landon finally made his way back home to South Carolina! Just one week shy of his first birthday! Our journey is a long way from over, but we’ve come so far than the 35% chance of survival that we were initially given!

She weighed in at a tiny 3 pounds 15 ounces. She cried twice before they could intubate her. The most wonderful sound I have ever heard.

She was placed on ECMO at less than an hour old and had her repair surgery was done at 6 hours old while on ECMO. She stayed on ECMO for 13 days. 95% of Kennedis’ left diaphragm was missing and Dr. Kays said her lungs where so small they were nonexistent.

Despite her setbacks and despite undergoing open-heart surgery, she is a healthy, happy baby. She shows no signs of pulmonary hypertension, is off oxygen support, and is off all medications related to CDH, despite having been born with only 20% of her left lung.

Even after all Aiden has been through he is still a bright, sweet, imaginative and inspirational little boy! We have talked to him numerous times regarding CDH and his surgery. He knows what his abdominal scar means and what Dr. Kays means to him. We are so blessed and thankful for every day with our Tiny Hero!

We went home with more questions than we had going to that appointment. In a short amount of time, we learned what we could about this life-threatening birth defect. We also learned that Pediatric Surgeon Dr. David Kays had one of the highest survival rates in the world for a congenital diaphragmatic hernia repair.

To most outsiders, CDH is ‘limiting’, but for me, it is the complete opposite. My CDH drives me to do well in school, and because I was lucky enough to have an amazing doctor like Dr. Kays, I am able to pursue all of the things that I love to do, things that most people would be surprised that I am able to do.

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.

On 1-18-18 Braxton arrived and wow did we fully understand the importance of being with Dr. Kays. Braxton crashed on day 2 and went on ECMO. He had his CDH repair on day 3 and after 7 days of Ecmo he was off.

We were so excited to be expecting our first baby. Everything had been so perfect until a 30 minute ultrasound turned into an hour and half. I knew something was wrong, but all they would tell me was they couldn’t get the pictures they needed. Once we met with the doctor we learned he had a Diaphragmatic Hernia.

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.

After coming home, Colt has thrived. He was cleared by cardio. He's gained weight like a normal baby would. He's on normal well baby visits without weight checks in between. At 5 months old, he's already sitting up on his own.

I just did not know what to do. Even though my doctors seemed confident that Lucas would survive, I knew I would never forgive myself if I didn't get him the best care possible and something happened.

At 7 years old, now Breanne has beaten all the odds. She makes me a better mom and person everyday and never gives up, no matter the obstacle.

Tuanny is now a year old, already had his annual check up with Dr. Kays, and has done extremely well at home. He battled through a few colds and had a bad bout of stomach flu and an ER visit but reached some great milestones: rolled over at four months, crawled around between six and seven months, and has been scaling the walls and walking with assistance since eight months.

So, there we were, over the moon watching every beautiful movement our little baby made on the screen. He said “Its’ a boy!’ as he continued to scan. I kept wondering what the black hole that he kept labeling “ST” was. It was near his heart, and I didn’t remember the heart being so narrow on baby scans. I

Dr. Kays spent 3 nights at her bedside doing everything possible to keep her off ECMO. He informed us that she was a lot sicker than we anticipated and was not improving much, so on day 4 he decided to do her repair surgery.

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.

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.