A Life Measured in Love, Not Time
Written by Stephanie
On November 6, 2024, Grant was born with TAPVR that was unknown to us until birth. He was rushed to Children’s Hospital with his dad, leaving his mom and twin, Micah, behind in the Women’s Hospital NICU. On November 7, Grant had a six-hour open-heart surgery with a 50% chance of survival. Miraculously, he survived, but he had an uphill battle in recovery. The doctors were incredibly kind and knowledgeable, teaching us a crash course on his condition during his initial three-month stay.
After three months, Grant was finally stable enough to come home, and we were able to enjoy his happiness and contagious smile there. He loved spending time with his siblings: rolling around with his twin brother, Micah; wrestling with Joe; and reading with Emily. He loved watching Wheel of Fortune after family dinners and sitting on the swing on the front porch.
On June 19, Grant had another corrective heart surgery, from which he quickly recovered and thrived. Grant had his most joyous time at home from July to August, but he was admitted due to oxygen needs and fluid accumulation in his lungs. Over the course of the next couple of months, Grant was diagnosed with pulmonary hypertension and developed many complications of the disease. Despite the incredibly heroic efforts of the CCU staff, Grant’s condition worsened, and he had to be placed on ECMO on October 15. He passed away peacefully in his father’s arms on October 18.
Grant’s battle with congenital heart disease was a part of his story, but did not define him. In the face of many surgeries and procedures, Grant’s joyous spirit permeated all the trials and tribulations. Grant had such great love for his family, and for his family at the CCU. The doctors and nurses at Children’s Nebraska were his heroes, and they fought tirelessly to care for him and fight for him every moment of every day.
While we wish the outcome was different, and we were still in and out of Children’s Hospital with Grant, we are honored to have been taken care of by the angels on the purple floor (second floor) of Children’s. Every person left an impression and we felt the love. Because that’s one thing we have learned from the last two years: that we must lead with love to make the world a brighter place.
“It’s so easy to notice all the bad. Scary easy. But I challenge you to notice those moments when someone comes to mind out of nowhere, and you feel the urge to reach out or pay for their coffee. That’s a God nudge. It’s so easy to get distracted and ignore that little voice, but I promise you the person on the other end is having a hard day, praying for comfort, or wanting to know that someone cares. God sends us to do things for Him all the time. I witnessed it time and time again, and I am still witnessing it today.”
— Angels on the Purple Floor, by Stephanie Stanley
