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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

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.

21 comments:

  1. Hi my name is Lily Hollowell I'm 13 and was looking my name up, I saw this she's so beautiful❤️

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    1. Awww .. thank you Lily Hollowell! :)

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    2. What a sweet thing to do Lily Hollowell. I know comments are so welcome to our Lilly's mom. Thank you from Lilly's aunt Nikki.

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  2. This is so beautiful :) She is a beautiful little girl and always will be. But always remember, don't be sad because its over - be happy because it happened :) Lily seems like an amazing girl!! I love her already and her smile is so contagious

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    1. Thank you so much! I love that "be happy because it happened."

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  3. Awwww, That is heartbreaking. I am sorry for your loss. She was so beautiful. I know it is heaven's gain, but still...

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    1. Thank you Evangeline, for your kinds words!

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  4. Thank you for sharing your story and your love of the Lord. I lost my son unexpectedly 2 years ago and he was much older - I'm so sorry for your loss. May God guide you, lead you and protect you always.

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    1. Thank you for leaving your comment. I am sorry about your loss to. May God comfort you and bless you!

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  5. Hello Dear,
    I am touched by this story, because it was just like mine. My angel Saralia lived for 4.5 months. We all fought but God in his great mercy took her to Heaven. thanks for this beautiful blog. Regards, Clara

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    1. Saralia is a beautiful name! I know she was a beautiful girl and you have beautiful memories of her. Thank you for sharing!

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  6. Surfing the net when I saw the most beautiful baby ..her face ..what presence.. I had to click and stop by... just cryed reading about your gorgeous baby Lilly. prayers and thoughts with you ♥

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    1. Oh thank you so much for caring and for leaving your comment. It means so much! I love hearing how Lilly has touched the lives of others.

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  7. Hi my name is Erin,
    Just two days ago, after several nearly perfect ultrasounds except that she was small, the tech discovered possibly 3 soft markers in our little girl. Its devastating. Thank you for your story, its an inspiration that maybe we may have some luck to enjoy her for a little bit. I have an amnio tomorrow and many appointment until two days before Christmas. Praying for miracles. Lilly is gorgeous. Thanks for your inspiration.

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  8. Hi Erin - My heart goes out to you! I know how shocking and scary and disappointing news like that is. I guess one of the biggest things I've learned from my own experience - and many others that I've gotten to know who have had T-18 babies - is to have HOPE. You just don't know what God's plan is for your baby. And - in your case - I can not tell you how many people I now know who were told their baby had T-18 but the baby DID NOT. Not knowing is so hard though, at least you will get your answer quickly through the amnio. I am praying for you and your baby and am here if you want to leave another comment or email me (LittleFirecrackerLilly ( at ) gmail. com) You can also get tons of support in the Facebook group "Trisomy 18 Mommies." Hang in there. No matter what happens - it is worth it. I am thankful for every single day we had with Lilly and every memory. I am still amazed at how many other lives she impacted - and continues to - all through her own short little life.

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  9. Thank you for posting this. My daughter Lily was just diagnosed with trisomy 18 at 7 days old. We are still coping with the diagnosis.

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    1. Jamie - I'm so glad you found this post. I pray it gives you HOPE. I'm sure your Lily is just beautiful! The diagnosis can be a lot to handle. Thankfully there is a lot of support via the web. If you are not already on it, try the Facebook group Rare Trisomy Parents (used to be Trisomy 18 Mommies) - that group helped me so much during Lilly's life.

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  10. Hi. I came across this beautiful child doing some research for my BSN. Now I know what I want to do with my life. Help children like this little Angel. Thank you for sharing her story. Prays and hugs. Stephanie

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    1. Wow - thank you so much for your wonderful comment Stephanie! It is incredibly encouraging to me to read you want to help these kids. Thank you and God bless you! - Lisa

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  11. Hi, I was looking up Trisomy 18 after reading about little baby Jonah Puruleski. Your Lily is a beautiful girl, and I am so sorry for your loss. I will be praying for you today. All my Love, Tori

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