Lilly's Story

"I will praise You, for I am fearfully and wonderfully made. . . ." - Psalm 139:14

We first found out that Lilly might be a special baby, when I had my first ultrasound with her.  The doctor found several "soft markers" of a genetic disorder called Trisomy 18.  We had never heard of Trisomy 18!  And it did not sound good.  The markers were present at subsequent ultrasounds.  Finally, about a month before Lilly's due date, I had an amnio done.  That confirmed that the active little girl I was carrying had full Trisomy 18. I did a little online research but it was so sad and frightening I quickly stopped.  Strangely, I did not find any of the positive stories about these children, until after I had Lilly.

Lilly waited 2.5 weeks after her due date to make her entrance into the world.  And she did it with a bang!  On Independence Day.  My entire labor and delivery was only 1 hour and 40 minutes.  I delivered Lilly breech, naturally.  She was 18 inches long and 5 lbs. 4 oz.  Our July 4th baby was very quiet at first and her breathing shallow.  But after about an hour, she seemed to really come to life.  The surprised doctors and nurses nicknamed her "Little Firecracker."  And about 4 hours later, we were allowed to leave the hospital with her to take her home to meet her eager siblings, Tabitha and Hunter.

Lilly was too tiny to nurse, so she drank breastmilk from a bottle.  Her feedings were not very long though because she tired quickly.  She had two holes in her heart and that made physical things much harder for her.  (Called VSD)

The afternoon of her first Saturday she began having what we guessed were seizures.  Her body would suddenly go rigid and her face would turn blue.  Then she would gasp and breathe again.  Several times my husband blew into her nose and mouth to re-start her breathing.  After a number of times, the "seizures" suddenly stopped, never to return.

We had heard that it can be very hard to find doctors willing to treat children with Trisomy 18.  That proved to be right.  In spite of living in an area of North Carolina that is surrounded by numerous top notch doctors and hospitals, no one would agree to do the heart surgery on Lilly that she desperately needed.  Finally, the cardiologist and surgeon team at Wolfson Children's Hospital in Jacksonville, Florida accepted Lilly's case.

(September 2010) We quickly packed and drove to Florida, and checked Lilly into the hospital.  The first thing the doctors had to do was to help Lilly to start gaining back the weight that she was losing.  (She had dropped down to 4 lbs. 8 oz.)  But even adding high calorie formula to the breastmilk was not enough. Lilly was just too weak to eat enough.  So doctors put an NG tube through her nose down into her stomach and pumped the milk/formula combination through.  Lilly hated that tube (who wouldn't!) but she did start gaining weight again.

Not long after that, the doctors made the decision to insert a pulmonary artery band into her heart.  They did not believe that she was strong enough to endure the complete heart surgery that she needed.  She did great during the surgery and recovery.  We were finally able to bring her home again twenty-some days later.

At that point our goal was to have Lilly continue to gain weight so that she could go back to Florida to get the VSD repair surgery.  The doctors wanted her to be 10-11 pounds.  Babies with Trisomy 18 gain weight incredibly slowly, so it was a bit over a year later when she returned to the hospital for that surgery. (November 2011)  She did well during the VSD surgery (doctors patched the two holes in her heart) and she recovered very quickly after.  Doctors were thrilled.

Sadly, the next month, on December 15, 2011, Lilly passed away.  Honestly it is still surprising to me at times.  She seemed to be doing well and on Dec. 15 had a really good day.  She was very active and had lots of smiles.  We put her down for her afternoon nap, and when I went to wake her that evening, found that God had taken her home.

So what was Lilly's life like overall?  It was the best we could give her.  We scrambled to learn how to best help her medicially so she felt as good as possible.  She had a host of doctors: pediatrician, cardiologist, pulmonologist, ENT, genetic pediatrician, ... I think I'm forgetting one or two ...  With the NG tube for feedings, Lilly lost her ability to suck.  So we finally had a g-tube put into her to feed her that way.  When she was old enough for food, I fed her a blenderized diet of healthy organic foods through her g-tube.  She had weekly physical and occupational therapy sessions at our home.

Lilly got sick easily so we worked hard to protect her from germs.  She was hospitalized twice for a virus, nearly dying both times.   (Jan/Feb 2011 and May 2011)

Aside from all that stuff though, most importantly:  we loved her.  We included her in everything we did.  We held her as much as possible, played with her, took her with us on walks, to church, to parks ....  We talked to her, snuggled her, kissed her, hugged her.  And she smiled and laughed in return.  She LOVED life.  She had a strong dislike for hospitals!  But she really enjoyed life and was very content.


We remain grateful to God for allowing us to have Lilly for 529 days.  She was - and continues to be - an incredible blessing to us.

NOTE:  I was not good at labeling my early posts.  If you would like to read a summary of each month Lilly was alive, see my posts labeled "17 day memorial 2013".  These ran from 11/29/13 - 12/15/13.