We knew we would be looking at an extended NICU stay with our CDH baby. What we didn’t know is that we would spend 323 days in a hospital 623 miles away from our home. While this time was unexpected and quite possibly the hardest thing we’ve been through, we found ways each day to make the best of a tough situation.

We were at a dead standstill with a baby who was miserable while attempting oral feeds and missing out on developmental opportunities because he was confined to a hospital room. It was time to have a care conference and discuss moving forward with a G-Tube.

My advice to families facing the decision about whether or not to grow their family is this - stay positive and don’t let the fear of CDH keep you from pursuing your dreams and growing your family. There is a 2% chance it may happen, and if it does, there are doctors with over 90% survival. There is hope!

“Being an advocate” was something I had heard of, but it really didn’t mean much to me until I received our CDH diagnosis. I had mostly just heard of that phrase as it pertains to “patient advocacy” when I was going to nursing school many years earlier. I never guess that being an advocate would be a role I would take on in a new way, and become one of the many hats I now wear as a parent.

We are honored to have you be a part of this journey to infuse the CDH world with the optimism, understanding, and support that this community needs. We invite you to come along with us because together we are stronger!

Our hearts go out to all CDH families everywhere- we are all victims and survivors in one way or another, and the heavens are filled with too many CDH babies who left this life too quickly. We know God’s hand is in the details of our lives, and praise Him for guiding our every step in this journey.