I love that we use these beads to teach her all about her journey and what she overcame. To show her how much courage she has, how strong she is, and remind her that she can do hard things no matter what she is faced with in life.

I was so worried that I was ruining my kids’ lives by moving them so far from everything they knew, and it turns out I had nothing to worry about. My children were positively spoiled by the love and attention from everyone out there, they made lifelong friends, and got amazing experiences they would not have been able to experience otherwise.

Once you are given a CDH diagnosis, several things generally come to mind, one of which may be, “How Will I afford a CDH baby?” The idea of medical bills, time off work, and expenses related to relocating may make everything seem impossible. However, there are several things you can do to begin saving and help offset the cost.

Flying with your medical complex CDH baby, all of their equipment and the fear of germs can be very overwhelming! We have put together a list of our best tips and tricks to make this experience as stress-free and easy as possible.

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!

I’m always tempted to make big promises when we’re getting ready for a medical procedure. I want to tell my kiddo that we’ll go on a big trip or have a special adventure as soon as we’re done. But I know that recovery can be unpredictable, and I never want to make a promise I can’t keep. Instead, try to find something you can deliver on, even if things don’t go as planned.

“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.

I would never wish a CDH journey on anyone, but I'm so grateful for who our family has become because of it.

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.