Baby Lily was only alive for two short days, but her family will hold tight to the memories they made with her during that time.
"It was so beautiful and precious. I would do it again, and again, and again," Julie told Ela Wunderli of Itsy Photography.
Wunderli photographed Lily's birth.
At 36th weeks pregnant, Julie and her family moved to California from Arizona.
Already having given birth six times before, Julie wasn't expecting anything but a normal pregnancy. She went into a regular OB/Gyn appointment during a week of unpacking and settling into her new home.
"At the appointment they wanted to do an ultrasound where they discovered many concerns," she said. "By the next day the doctors told us that our daughter most likely had Trisomy 13 or 18, but they couldn't be sure until after she was born and tested."
The news was shocking. Trisomy is the presence of three chromosomes instead of one.
Down syndrome, or Trisomy 21, is the most commonly known trisomy.
Trisomy 13 (Patau syndrome) and Trisomy 18 (Edwards syndrome) are genetic disorders that include health problems that affect almost every organ of the body. Both are fatal diagnoses.
Over half of babies with Trisomy 13 and Trisomy 18 perish before they make it through their first week of life. It is unusual to make it past their first birthday.
During the 20 hours of labor, the room was thick with anticipation. "Everyone held their breath to see if she would survive the delivery," Ela shared. "She held her breath too! But when the doctors tried to intubate her, she let out a tiny cry and started to breathe on her own. It was a miracle!"
When she arrived, Baby Lily was put on a CPAP (a breathing assistance machine) and immediately rushed to the NICU to be monitored.
Her siblings got to visit her later that morning.
Each child got to touch Lily and share a special moment with her before spending time with Julie.
Later, Julie spent some time with Lily in the NICU.
Ela captured their beautiful, moving moments together. "I couldn't have been happier to have caught her tiny eyes opening — even if it was only for a split second," Ela shared. "She cried a tiny little cry — and I must say it was like music to hear."
Lily lived for two and a half days.
During those two days, she was shown an incredible amount of love by her family, who threw her first and second birthday parties.
She passed away free of tubes and wires, peacefully comforted in her mother's arms.
From her obituary:0comments
". . . She spent two-and-a-half celestial days with us. We celebrated her first birthday with lilies, handwritten birthday cards from her brothers and sisters, and a big shiny balloon in the shape of a number one. On her second birthday, we gathered round her. We held her. We hugged her and kissed her again and again. We told her how much we loved her, and how we were going to miss her so very much. And we said good-bye. For now."
Ela says of the beautiful two and a half days she shared capturing Lily's time with her family, "I've never seen a mother so radiant and glowing. The faith of this family was beyond measure."