I was 22 when I found out that I had become pregnant. It was scary and so exciting. We get to about 18 weeks through and they had just finished the ultrasound when we were taken to a discussion room....that moment hearing that my precious baby girl has caudal regression syndrome. Something I've never heard of and what I later found out that many doctors never heard of. We were pushed to abort by so many friends and family. How could I do such a thing? We decide to keep going forward, a few weeks later something is wrong with her heart. All we wanted was her to be happy and healthy. So we started traveling to ohsu. We were being prepared for the worst outcome. Then on May 18, she decided to make her appearance. She was beautiful...and stablizing fairly well despite her health issues. She was flown up to ohsu the next day, I soon followed the next day. We spent 2 weeks in the nicu before we could go home. She was 6 weeks old and had a pa band surgery. In that stay she was also diagnosed with asplenia. Months went by and we had a beautiful happy baby girl named kailyn. Then recently she came up for her Glen surgery. Soon we found out her lungs weren't ready, this wasn't part of the plan. They decided to tighten the band to help prepare her for her next surgery. She was struggling to recover. 5 days later she was doing better but not great. They decided it would be best to go back and put a stent in her heart. She came back, hours after she was better than before.