Lillian Eva Hollowell, Trisomy 18, 7/4/10 – 12/15/11, Moncure, NC
Lillian Eva Hollowell, was born on July 4, 2010. “Lilly” lived a very full life for 17 months before passing away gently on December 15, 2011. Her entire life was – and continues to be – a glory to God.
We first learned that Lilly might have Trisomy 18 during a routine ultrasound. Soft markers were identified: she was a very small size and low weight, she had clenched hands, a heart defect, a spot on the brain, there was lots of amniotic fluid, and the umbilical cord had only two arteries instead of three. After a couple more ultrasounds, I agreed to have an amnio. We wanted to confirm one way or the other, so we could better work out a plan with doctors for delivery. (I had a midwife but doctors got involved with us once Lilly’s problems were identified.) Once the amnio confirmed Lilly had Trisomy 18, the doctors took a hands off approach. Lilly was in Frank breech position and the doctors amazingly even gave permission for her to be born naturally.
My labor and delivery with Lilly was quick – only 1.5 hours total. She was born breech. She was barely breathing and motionless for about an hour and then really came to life. She was able to drink well from a bottle. Doctors let us leave the hospital within six hours (unheard of!) so we could take Lilly home to meet her siblings, Tabitha and Hunter. But not without first nicknaming her “Little Firecracker.”
Lilly had two heart repair surgeries during her life. The first was to place a pulmonary artery band. (She was too small and weak for the needed VSD surgery.) Thirteen months later she had the regular VSD surgery to patch the two holes in her heart. Both surgeries were done at Wolfson Children’s Hospital in Jacksonville, Florida. (We live in North Carolina but could not get a doctor to operate on her here.) Lilly also eventually had a g-tube placed. She ate a blenderized, real food diet. She had two viruses during her life, both of which almost killed her. She had both physical and occupational therapy each week and loved the sessions and worked hard.
Even though she had to fight hard for her life a number of times, she was well more often than sick, and a very happy little girl. She loved her family and her daily routine. She was quick to smile, very content, and loved life. Lilly blessed countless lives and touched many hearts. We are all better people because of Lilly. We rejoice that she is now perfect and whole and in the arms of Jesus and that we will see our little girl again one day. Lilly now has a little brother, our “rainbow baby”, named Solomon. We love to tell him about his big sister.
I began a blog for Lilly shortly after she was born. It has readers from all over the world: www.pray4lilly.blogspot.com I’d love to get a comment from you or hear from you at LittleFirecrackerLilly@gmail.com