When we finally decided to share the news of the diagnosis, there were a few things we did that helped tremendously. First, we created a Facebook page dedicated to our CDH journey. We realized we would need all of the support and love we could get to make it through, no matter the outcome. We added everyone we could and asked them to share the page with their friends, church family and anyone else who would lift our family up. Second, we decided on and announced her name. It doesn’t seem like a huge thing but it was for us. We wanted her to have a strong name so we named her after her great grandmother who was one of the strongest and most stubborn people we have ever known. Third, we asked for and accepted as much advice from friends and friends of friends who were going through a similar journey. We were amazed by the outpouring of love and support we received. Fourth, we designed and sold t-shirts that said “Team Lily” through Custom Ink and donated the proceeds to Cherubs. I’ve found that the best way to get out of your own head is to try to bless others. We wanted to give money to a worthwhile foundation that dedicated their resources to helping families just like us. Lastly, we never stopped believing our girl would be okay. That last one was the hardest to do, especially when we received the middle of the night phone call saying we needed to give permission for ECMO over the phone because our daughter was dying. We made it to the hospital to see her for just a few minutes before they took her back to surgery. The doctors were hesitant to put her on ECMO because in an earlier ultrasound they had seen what looked like fluid on her brain. This of course could have been blood and given that she would have to be on blood thinners for ECMO it could potentially be fatal. Given that both outcomes could lead to her death but only one could potentially save her life, we went with ECMO. I’ve never cried so hard in my life. This is where her page became such a blessing. When we could do little more than fall to our knees, we texted everyone we could think of asking for prayer. I’ve seen my daughter lying paralyzed on a tiny bed, covered with more tubes than I can count, being kept alive by more machines than I have ever seen in one room. I have seen her cries made silent because of a breathing tube. I waited 23 days to hold my baby girl for the first time. And finally after 108 days in the NICU our girl came home just in time for Christmas. While I wouldn’t wish this journey on anyone, I am grateful for it because I know for a fact I will never take for granted one single moment I am given with Lily. She is my hero and I am so proud to be her mommy. It is my life’s goal to make sure that she knows how fully loved, truly perfect and wholly prayed for she is. I pray that our story can be an inspiration to others who are going through something similar. I believe that life is best when we share our hope with others so if our story can be even the smallest inspiration to one family, we have succeeded.”
