In a matter of hours, our world turned upside down. Kate was rushed to Indianapolis, and less than 24 hours after giving birth, we were on our way to Indianapolis. Doctors discovered Kate had a severe congenital heart defect. She would need surgery, but they reassured us she would survive — she just might never be a marathon runner. At the time, we clung tightly to those words.

Kate spent 15 days in the NICU and underwent a procedure to help create a pathway for oxygen while doctors hoped she would grow strong enough for future surgeries. Eventually, we brought her home, believing we understood the road ahead. But soon we learned there was far more to Kate’s story. She was diagnosed with DiGeorge syndrome, also known as VCFS or 22q, a serious genetic disorder that impacted nearly every part of her fragile little body.

At just three months old, we returned to Indianapolis for her first open-heart surgery. The recovery was long and difficult. Nearly a month passed before we were finally able to bring her home again.

Then, around nine months old, something beautiful happened, Kate began to thrive. Feedings became easier. She gained weight. Through daily therapy, she learned to sit up, roll over, and use both hands. We spent hours outside together walking, swinging, swimming, and soaking in every precious moment. She even took her first family vacation to Lake Michigan. For a little while, life felt lighter. Hope felt possible.

Just after her first birthday, we returned to Indianapolis for her second open-heart surgery. This one was planned. We knew it was coming, and we believed it would be her final repair. But recovery was difficult again. Doctors discovered a residual hole in her heart, meaning Kate would need a third open-heart surgery. After two long months in the hospital, we finally brought her home,  but deep down, we knew she was struggling. A visit to our local emergency room quickly became a LifeLine flight back to Indianapolis. Kate’s heart had failed. For twenty terrifying minutes, doctors fought to bring our little girl back to us.

She spent another month in the hospital, dependent on oxygen, unable to heal, unable to get stronger. Eventually, doctors referred us to the University of Michigan. They agreed to take her, and once again, we held onto hope. Kate received a feeding tube, but she was so weak and so very sick. We traveled early so the team at U of M could prepare her for another surgery. After weeks of waiting, she was finally considered “strong enough.”

Her fourth surgery took place in December. It didn’t work.

Her pressures remained dangerously high. Her pulmonary arteries were too small. She was in congestive heart failure. Nearly every day, chest tubes were placed to relieve the pressure building inside her tiny body. Our sweet girl was failing, and her little heart simply wasn’t strong enough anymore.

We placed her gently into God’s hands, and He called her home on a snowy Tuesday morning, January 15, 2008.    Surrounded by love, we said goodbye to our beautiful daughter — for now.