Theo was born at home on February 15, 2019 seven minutes past midnight with bright blonde hair. His light shone so brightly in his eyes as he smiled in his first few days of life. He was at home for 3 blissful and relaxing weeks until we realized something was amiss.
At his Pediatric appointment the doctor heard a very faint heart murmur and we got an appointment with the ER and took Theo in. As we entered they were ready for us with 15 health care professionals and equipment. His diagnosis was Pulmonary Atresia, VSD with Tetralogy of Fallot and MAPCA’s. Basically, many heart defects that are extremely rare when put together.
We spent 2 weeks at Primary Children’s and then through many miracles we transferred to Lucille Packard in California to await his heart surgery. On April 9 Theo had his life saving operation, it was a great success.
The doctors were positive and said he should live a long life with a few more heart surgeries as he grew. We spent 3 more weeks in the hospital with just a few setbacks. Theo came home on May 6 with only a feeding tube and a smile that lit up his bright blue eyes and penetrated the soul.
After 3 weeks of feeding through a tube he was able to go right back to breastfeeding, we were all amazed at his miraculous recovery! We spent 3 and 1/2 lovely months with him going to weekly doctors appointments, spending time at our cabin, getting comfortable with home life, loving his big brother Porter, playing, going on a few small family vacations, and hitting all of his development milestones.
On August 16 late in the evening Theo started throwing up all of his breastmilk and couldn’t keep it down. At 3 in the morning on August 17 we rushed him to the hospital. Through many failed protocols and life saving attempts, he spent his last couple of days on this earth on ECMO. We had so much hope that he would be able to stay with us, but he had other plans.
He died at Primary Children’s Hospital on August 21st 2019 in his mama’s and papa’s arms surrounded by our wonderful family and friends. We love you baby Theo. We love finding your beautiful sunshine smile in nature as you send blue skies, hearts and yellow flowers, especially sunflowers to us in many ways. You truly are our “gift from God” as the meaning of your name suggests. You are greatly missed by so many who adore you and can’t wait to see you again some day.
Bedtime stories are a favorite in our family. We read many stories to Theo and his big brother Porter while at home and in the hospital. Theo is our sunshine boy, we look to the stars at night with faith that the sun will rise again. Goodnight sweet babe, until the morning comes.
Love, Mama, Papa and Porter
