Live Like Lou
Grant and Lacey Friesen were blessed to hear on December 9th, 2019 they were expecting a baby boy. Their first born.
After the excitement of knowing it was a boy, the doctor explained there were some questionable markers on the ultrasound. Markers that typically indicate a Trisomy diagnosis - specifically Trisomy 13 or 18 - both fatal diagnoses. Their son was not likely to survive. Grant and Lacey decided together that regardless of their son’s future, the most important thing was that he was loved - both by his family and by God. Five days after hearing their son probably wouldn’t survive, Lacey had another ultrasound that showed problems specifically with their son’s brain, heart, feet, hands, and bowels. Lacey had an amniocentesis done on the 20th of December and on the 3rd of January the microarray came back normal. Four days later they received news that he had a pelvic kidney.
On February 17th, news came from the doctor that their son might actually survive. Their life again, was completely flipped upside down. On March 16th Lacey was admitted to Methodist Women’s in Omaha due to low amniotic fluid. She was released 3 days later and sent back home.
Louis Allen Friesen made his debut into the world on April 2nd, 2020 at 3:17pm. Weighing 5lbs 7oz, little Lou was fighting his way out. He was moved to Children’s Hospital in Omaha, about 15 minutes west of Methodist where he was born, where he would spend several months fighting for his life.
He had his first surgery at just 8 days old - open heart surgery to repair his aortic arch. He also had surgery on May 6th to repair a diaphragmatic hernia and place a g-tube. On May 21st, Lou had a near code event which landed him in the PICU at Children’s. As Lou grew, it was discussed time and time again to extubate. Each time it was unsuccessful, and they would have to leave the breathing tube in. After 4 failed attempts, it was decided to place a tracheostomy tube. This was done on June 11th.
June 11th was a big day in Lou’s life. Not only did he get rid of the tube in his mouth, but his parents received an official diagnosis. Louis has what’s called Coffin-Siris Syndrome. It is an extremely rare genetic condition of which only about 300 cases are known in medical literature, and additional unreported cases worldwide.
As of today, September 10th, Lacey stays at the Rainbow House in Omaha and Grant is at home working on his family farm. It is incredibly difficult as new parents to stay afloat with all the expenses of driving back and forth to the hospital, food cost, and every day living.
Please consider a donation or to simply share this page as Lacey, Grant and Lou would appreciate it so much. Unfortunately, they don’t have a timeline on a coming home date for Lou, so it is very difficult to know how much help they are going to need. God bless you and thank you so much for your help.
Live Like Lou