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.”
Featured cherub of the week is Lily Schroeder, daughter of Rebecca and Jeff Schroeder. The following is written by Lily’s mom, Rebecca: “My husband and I had been trying to get pregnant for a little over 2 years. After several tests and multiple procedures we were finally told by my doctors that we could not conceive on our own. Heartbroken yet determined we made the appointment to meet with a specialist to begin the process of IVF. Just before our scheduled appointment we discovered we were pregnant. We were over the moon! Finally our prayers had been answered. At our 20 week ultrasound we invited my mom, stepdad and sister to come visit so that they could be a part of this journey. We had no idea that we would be taking home so much more than precious ultrasound pictures… I knew something was wrong when the tech left the room pretty abruptly. About 5 minutes later my OB came in and asked to speak to my husband and I alone. My mother and sister, both of whom worked in the medical field left silently. My doctor placed her hands over mine and with tears in her own eyes told me that my perfect baby girl had something called a congenital diaphragmatic hernia. I know she said a lot more after that but I stopped breathing. Through the tears I managed to glean that we were being sent to a specialist that very afternoon to get more information. Thus began our CDH journey. We saw specialists for ultrasounds, MRI’s, an amniocentesis and much more. We were scheduled to come back every few weeks to have additional imaging and to meet with even more specialists. Eventually came the big meeting with our pediatric surgeon and the rest of the care team. We sat across from a team of doctors, our surgeon, a few neonatologists, a pulmonary hypertension specialist, a social worker and the office manager. I heard statistic after statistic. Apparently our daughter was given an 85% chance of survival because very little of her liver had migrated into the chest cavity. If I were a betting person I would take those odds. But I’m not and all I heard was that my girl had a 15% chance of dying. The next few months were a blur of appointments. I felt like I was drowning. If it weren’t for my faith, I know I would have. I truly believe that every step of our journey has been a huge part of God’s plan. We just happen to live in Chicago where there is a CDH specialist who just happened to be recruited from Cincinnati Children’s Hospital 2 years ago, which is right around the time we started trying to get pregnant. There are only 4 hospitals in the country that specialize in CDH and we happen to live 10 minutes from one of them. Not only that but Lurie is a level 1 pediatric surgery center, only 4 other hospitals in the country can say the same. All of these blessings were not initially apparent to me. It took a lot of prayer on my behalf from friends and family.