When the doctor finished up that prenatal ultrasound, he said the words that would change our lives forever. “I don’t quite know how to tell you this… there is something very wrong with your daughter’s heart”. At that moment, mommy’s own heart broke. Over the next few days, the doctors told us just how sick you were. They said life would be very hard and it may just be best to give up.

We said “No.” We were going to fight with everything in us.

When the doctor pulled you out of my tummy, we did not even get to see you. They took you away so they could save you. And you started fighting. You fought through breathing tubes, feeding tubes, open heart surgery, blood draws and medications. You made family, friends, nurses, doctors, and eventually thousands of people on social media, fall in love with you. There was something different about you. People described your eyes as “piercing” and that it appeared as though you could see into souls. At about 12 weeks old, you started smiling. Even when you were uncomfortable, you smiled and your whole face lit up. In your four months and nine days, you showed more determination then many experience in their entire lifetime.

At some point, your heart got sicker and sicker, and the doctors decided you needed a new heart. You were listed as a status 1A, the highest priority for a heart transplant. We felt so much hope. Even as you got sicker, we were determined that a new heart would come in time. The medical team focused on preparing our family for what life would look like once you got your new heart and we focused on cherishing each moment with you at the hospital, just waiting for that life saving organ. But one day, your heart was just too tired and it gave out. A new heart did not come in time. As daddy and I held you and kissed you goodbye, I felt like a piece of me died with you. Your fight, our fight, was over. You entered Heaven and were given a whole heart.

I miss you every minute of every day. I take comfort knowing that your little life touched so many but I mourn the loss of time with you. It hurts me to know I will never take you to your first day of kindergarten, to get your first pedicure or watch you get married. I wonder what you would have looked like as a toddler, child and teenager. I think these thoughts will always haunt me.

 I want to say thank you. Thank you for the four months of snuggles, smiles and coo’s. Thank you for fighting so that we could get to know your sweet and determined personality. Thank you for showing me how to be strong, so that I can make it through this life without you. Thank you for teaching us that though parenting isn’t always easy, it’s always worth it. You were always worth it. I would fight for you over and over again. I love you forever and always. Mommy

*My baby girl was diagnosed with a congenital heart defect called Hypoplastic Left Heart Syndrome when I was 24 weeks pregnant. This meant that her left ventricle was missing and she had half a heart. Jaylee Hope was born on June 13, 2016. We hope that by sharing her story, we can raise awareness about congenital heart defects as well as the importance of organ donation. Jaylee needed a new heart, but she did not receive it in time. We do not want other families to face what we faced. You can help by becoming an organ donor which can be done at www.organdonor.gov/register.html. You can read more about Jaylee’s life and our family’s story on the facebook page “Jaylee’s Journey of Hope”.

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