Full Trisomy 18
July 4, 2010 ~ December 15, 2011
Lillian Eva Hollowell, was born on
Sunday morning, July 4, 2010. “Lilly”
lived a very full life for 17 months before passing away gently on Thursday,
December 15, 2011. Her entire life was a glory to God.
Our “Lilly Sunshine” had an intense
will to live which she showed from the start.
She was motionless, breathing weakly, for the first hour after being
born, but then let out a big cry, and let us know she wanted to stay. It being Independence Day, she got the
nickname “Little Firecracker.”
Due to a genetic condition called
Trisomy 18, or Edwards Syndrome, she had heart damage and a very weak immune
system. She got very sick and had to
fight very hard for her life a number of times.
However, 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.
Lilly’s family misses her greatly
and looks forward to the day we will see her again.
Lilly’s proud parents: Frank and Lisa Hollowell, sister Tabitha (10
years), and brother Hunter (3 years).
The family lives in Fuquay-Varina, North Carolina.
Lilly’s blog has readers from all
over the world:
www.pray4lilly.blogspot.com
-
- - -
The above is a modified version of
Lilly’s obituary. I wanted to add some
details about Lilly’s life, which I thought would be of interest to other
Trisomy families.
We first learned that Lilly might
have Trisomy 18 during a
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 after only a few minutes of pushing. 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.
Six days later, Lilly had a number
of episodes on afternoon where she stopped breathing and turned blue. My husband had to blow in her mouth and nose
to bring her back. Then episodes stopped
and never returned. We briefly had
hospice service but then cancelled after a couple weeks.
Lilly’s heart had a large hole and
she just didn’t have the strength to drink breastmilk from the bottle like she
needed to. She started losing weight and
seemed to be in pain off an on. When she
was two months old, we traveled to Wolfson Children’s Hospital in Jacksonville,
Florida for help. (We live outside
Raleigh, North Carolina but could not find the help we needed here.) At Wolfson’s doctors put Lilly on an NG
feeding tube and pump and she began gaining weight again. Lilly needed VSD repair but she was just too
weak, so a pulmonary artery band was put on her heart. We brought Lilly back home and she really
began improving.
During Lilly’s life she had two
viruses, both of which nearly killed her.
But to the doctor’s surprise, both times, she fought her way back to
health.
Lilly had a g-tube placed and when
she was old enough, I put her on a diet of blenderized real foods. That helped her to thrive. She also had both occupational and physical
therapy each week and she loved that.
She was a hard worker. We had
hoped to start therapy to help her learn to eat by mouth. (She only liked eating coconut oil by mouth.)
In November 2011 we returned to
Wolfson Children’s Hospital and Lilly had surgery to repair her VSD. We found out at that time that her heart had
two holes instead of one. Lilly
recovered quickly and was out of the hospital in 9 days.
On December 5, Lilly’s breathing
was odd off and on during the morning. I
took her to the emergency room and asked for a chest x-ray. It revealed white spots in the chest. One doctor suggested heart failure but her
cardiologist said her heart was functioning normally. I took Lilly home and started nebulizer
treatments. Lilly saw her pulmonologist
two days later and the white spots had become a white mass behind her
heart. However she was acting just fine
so we went back home. She started an
antibiotic, continued nebulizer treatments, and I kept a pulse ox hooked to her
when she slept. She continued to act
like she was feeling fine.
On December 15, Lilly seemed to be
feeling extra good. She had physical
therapy and her therapist remarked that Lilly seemed to be the most energetic
she had been since coming home from heart surgery. I took a video late that morning of Lilly in
her bouncy seat playing with her animals hanging from the arch, and posted it
on her blog. Later that afternoon, my
husband came home early because he had had a dentist appointment. I had him put Lilly down for her nap for me.
She never woke up. When I went to get her up that evening, she
was dead. Paramedics came and tried to
revive her. But she was already in
heaven. We were honestly surprised she
passed away that night, but we continue to thank God that He took her so gently.
We had 529 glorious days with Lilly
in our arms. We are so grateful to God
for every second. What an amazing little
girl she was and what a blessing to us and so many others! Thank you God for creating Lilly to be our
daughter.
To follow Lilly's family and what they are doing now please visit her blog
www.pray4lilly.blogspot.com
We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin
your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children bring
joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~ Vanessa
No comments:
Post a Comment