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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

Sunday, December 22, 2013

Random photos and thoughts

I have all sorts of ideas of things to share on this blog but am completely distracted with so many things to do right now.  And I've been busy making several of my "angel feather tins" to send to families who lost children this month.  (December is really a rough month - so many Trisomy children died in December.)

The day after Lilly died, my friend. P.D. and her husband came over and brought us dinner and hugs.  They also brought us a plant.  This is the first year it bloomed and it is beautiful!  I think it's a "Christmas cactus?"  Lots of "hellos from Lilly" on it:

We're on break from homeschool and using that time to try and clean up the house some.  While we were tidying up the other day, Solomon went "shopping" on our pantry shelves.  It cracked me up to see him pushing his "cart" by:

Our "Elf on the Shelf" has been busy this season, though I will be glad when I get to stop thinking of places to put him each morning.  I see so many clever things online that people do with their Elf, but it's all I can do to move him to a different place.  Our Elf was originally named "Clive" but this year it evolved into "Clive Staples Lewis" (C. S. Lewis) after the kids were totally immersed in the Chronicles of Narnia this year.  Here is Clive hanging out with LillyBear:

I'm not a big gardener but I do like the look of flowers adding color around the yard.  As I've thought about planting more in the spring, I've wondered how to protect it from the chickens.  That includes Lilly's garden, which is currently covered with plastic fencing to keep the hens from dust bathing in it.  So I was very excited to find a book at the library the other day called Free-Range Chicken Gardens: How to Create a Beautiful, Chicken-Friendly Yard by Jessi Bloom.  The pictures it are great and so is the information.  I'm learning so much that I've decided I need to buy my own copy of this book.  I was pleased to see two kinds of flowers which I planted last year, Echinecea (coneflower) and Black Eyed Susans, do well with chickens around.  Mine have and now I know why!

It made my mommy-heart feel so good yesterday to look out the window and see Hunter patiently pulling Solomon around the yard in a wagon:

It's not always easy for Hunter to be patient with his little brother.  Hunter likes to do a lot of building and electrical set ups and Solomon has a hard time resisting messing with Hunter's things.

Tabby had a funny blog post yesterday about the goat milk supply problem we're having with Christa.

Speaking of Christa, Solomon found a new "set of wheels" to ride:

Well that's it for now! 

"This is the day the Lord has made; We will rejoice and be glad in it." - Psalm 118:24

Thursday, December 19, 2013

Trisomy 18 article in Clinical Nutrition

I want to thank everyone that hung in with me for my 17 days of remembering Lilly.  My stats skyrocketed during those days, so I know people were reading.  I just don't know who most of you were!  I was very pleased to hear from several newer Trisomy 18 families who found my posts helpful.  I had hoped I could help someone by summarizing Lilly's life because I know I was not good at labeling my early posts.  Perhaps the summary is like an "index."

Recently my step-mom sent me a scholarly journal called Topics in Clinical Nutrition.  The current issue, (volume 28 number 4 October - December 2013) has an article entitled "Feeding Changes in Children with Trisomy 18: Longitudinal Data on Primary Feeding Method and Reflux Identification and Treatment" in it.  (You can read the abstract at this link:  .  (The article is currently available for purchase.  I'd be happy to send anyone a copy that is interested.)  The most exciting thing about this article is that the authors do not call children with Trisomy 18 "incompatible with life" but call for more research to be done to help these children!  With all the advances in medicine, there is no reason more can't be aggressively done to help these children.  They are so worth it!

I'll leave you with a funny picture of Solomon.  He loves to feel his hair blowing when Hunter vacuums.

Sunday, December 15, 2013

Day 17 - Remembering Lilly - December 2011

This is my last post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

December 4, 2011 - December 15, 2011

Though Lilly didn't make it to Christmas day, in her 17th and last month, she was with us during much of the season's preparations.

We got to take her to the Christmas Tree farm to cut a tree with us for the second year in a row.  She LOVED a decorated tree - I think she liked the lights best.

at Jordan Lake Christmas Tree Farm

Lilly was my most patient child with getting her pictures made.  Of course she had lots of practice!  Because I never knew when her last day would be, I took a picture of her almost every day of her life.

Lilly's new angel tree ornament
love those lights!
sweet girl
huggable little girl in red

Lilly continued to get physically stronger as the days past, recovering from her heart surgery the month before.  However, she began to get that pesky extra congestion again.  Out came her arch enemy - the nebulizer.  That turtle mask made her so mad at times!

that little hand is trying to push the mask off!
Then one day her breathing had that "weirdness" to it that scared me.  It wasn't awful but it wasn't right.  So I whisked her off to the emergency room and asked for a chest x-ray.  It revealed some "white fluffiness" in her chest.  The doctors were ready to do whatever I wanted.  They asked if I would like to check her into the hospital for observation.

Looking at her in the ER, she was smiling and acting happy.  I knew how much she HATED being in the hospital.  (Some people don't think T-18 children can communicate what they feel about things.  Oh my, are they wrong!)  I decided to take her back home and monitor her closely.  I also contacted her cardiologist.  We had an appointment with a pulmonologist the next day and the "fluffiness" had not grown.  Lilly was still acting well.  This doctor had grown to love Lilly and asked me to check her in since she knew that Lilly could take a dive so quickly.  I promised to if she seemed any worse.

She never did seem worse.  In fact she seemed to be getting better.  On her last day though, she did have a "barking" kind of cough that scared me - but ... she only coughed 2 or 3 times that day so I figured I shouldn't worry too much.  Pulse ox numbers were good.  Lilly had physical therapy and enjoyed it.  In fact, her therapist said that was the best Lilly had done since coming back from surgery!  Lilly happily played in her bouncy seat wacking at the animals hanging there.  She was chatting away at them.  I took a short video and posted it on this blog.  She gave me so many smiles that day - any time I was near her and talked to her or looked her way.

The day proceeded normally except that Frank came home earlier than usual that afternoon from work, because he had had a dentist appointment.  He played with her a little and then I had him lay her down for her afternoon nap on her play mat.  (She liked to have tummy time with her mirror and things and then would fall asleep after a bit.) 

I let Lilly nap a bit longer than usual that evening.  But when I went to wake her, she was dead.  The nightmare that I often had and replayed in my head had finally happened.  God had called her home.

"Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be." - Psalm 139:16

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *  * *

Today we went to Lilly's grave and took her her Lilly colored Christmas tree.  LillyBear came with us too.

I know this:

"He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end." - Ecclesiastes 3:11

I am glad today is about over though.  My heart just plain hurts.

Saturday, December 14, 2013

Day 16 - Remembering Lilly - October and November 2011

This is my 16th post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

Ooops!  I miscalculated how many days it would take to me to cover Lilly's 17 months.  I guess I forgot to count her first 4 weeks as a day.  So today's post covers two months.

October 4, 2011 - November 3, 2011

Sneaky Lilly in her knitted Mary Janes
At 15 months, Lilly weighed 13 lbs. and was 26.5 inches.  This put her in the 3rd percentile for her age.  She was accepted for heart surgery and scheduled for early November.  I continued to introduce new foods to her, feeding them to her through her g-tube.  She did great.

Frank has 2 weeks off work every October and we took advantage of that time, and the cooler temperatures to go on numerous outings.  I'm so glad we did - Lilly enjoyed them and I love that we created more memories with her and have fun photos.  Here are some pictures from those trips (all in N.C.):

inside the old schoolhouse in Fuquay-Varina
2nd year at the pumpkin patch!
Crowder Park
Asheboro Zoo
snoozin' in Bath

Just a few more fave photos from the month:

some T-18 kids have wacky cowlicks - Lilly included!

November 4 - December 3, 2011

Lilly celebrated turning 16 months by having open heart (VSD) surgery at Wolfson's Children's Hospital in Jacksonville, Florida.  She had a large hole in the lower chamber of her heart and another one in the upper chamber.  The holes were patched. She did great overall, and was only in the hospital 9 days.  All the doctors and nurses were so pleased with Lilly and enjoyed her.  We will always be so thankful to them!  Here are a few pictures from that hospital stay:

Lilly's incision was actually glued shut! It healed rapidly.
snoozin' with Hank the caterpillar
 Driving back home to North Carolina:

 I took this picture of Lilly and used it to make thank you cards to send to each of her many doctors:

We had Lilly with us for a second Thanksgiving:

One more to close out Lilly's 16th month:

". . . Do not grieve, for the joy of the Lord is your strength.” - Nehemiah 8:10

Friday, December 13, 2013

Day 15 - Remembering Lilly - September 2011

This is my 15th post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

September 4, 2011 - October, 3, 2011

  At 14th months old, Lilly had an ultrasound done of her kidneys.  (T-18 children often have kidney issues.)  Lilly's kidneys were just fine!

She also had a heart catherization done to check the pressures on her heart.  It went smoothly and she came out of the anethesia easily as usual.  (I've heard a lot of doctors think T-18 children can't tolerate anethesia and will die.  Lilly never had any problems nor have any other of the T-18 children I know of.)

While at the hospital, Lilly received a beautiful Lilly-colored quilt from the genetic counselor who we first learned about Trisomy 18 from.  This sweet woman kept up with Lilly through my blog.  Here's Lilly posing with the quilt behind her:

Lilly was finally big enough for size 9 month clothing.  She couldn't wear one piece outfits though - they had to be g-tube friendly.  I had started giving her bolus feeds during the day, and continuous feeds at night.  Because she was small and had a tiny stomach, I fed her small amounts (by bolus) about every hour to hour and a half during the day.  I had started the blenderized diet off with pureed avocado in chicken broth.  She did great!

(If you are interested in trying a blenderized diet for your g-tube fed child, I highly recommend the Homemade Blended Formula Handbook available from )

Lilly had a lot of fun playing with beans in occupational therapy.  We'd often find them still clutched in her hands after we thought we had gotten them all.

feet in the beans

This month Lilly began to lift her head a lot more.  She also had another cold, which we dealt with by using the nebulizer and saline spray and suction.

I'm going to get you you irritating can of saline spray!
I'm going to get you too Mr. Turtle mask!
A few more photos from the month:

Don't you wish you had hair that naturally stuck up?

sweet baby

"The Lord has done great things for us, and we are filled with joy." - Psalm 126:3