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.

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

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 www.mealtimenotions.com )

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

Day 14 - Remembering Lilly - August 2011

This is my 14th 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.

August 4, 2011 - September 3, 2011

My favorite Lilly accomplishment from her 13th month was that she learned to laugh.  We so enjoyed getting her to giggle or do a good belly laugh.  Sadly, after she had her second heart surgery two months later (Nov.) she never laughed again.  I feel confident though, if she did, that she would have learned to again.  (Something I noticed with Lilly, that other parents of T-18 children have told me happens with their kids too, is that after a major sickness, surgery, or hospitalization, their child seems to "forget" how to do some things for awhile.  But eventually the skill comes back.)

Lilly started occupational therapy.  It was once a week, at our home.  She continued her physical therapy.  She loved them both and worked hard.  The first thing the occupational therapist did was to order little hand splints for Lilly.  Lilly wore them at night to train her hands to stay open more.  I called them her "boxing gloves."

 One tip I have for other parents of medically challenged children is to keep a 3-ring binder of their medical records and your notes.  Lilly's was a 3-inch binder that weighed over 7 pounds!  It was such a help.  I took it with us to appointments and to the emergency room - so helpful for everyone involved in her care.  Even the nurses could look things up for themselves in it.

Lilly took her first boat ride when we joined one of Frank's friends on his boat.  Here she is using her Jedi mind powers to drive the boat:

I was able to purchase a refurbished Vitamix blender through a special discount program the company has for people who receive food through their g-tube.  I was excited to start blenderizing food for her, to feed her through her g-tube.

Finally, we also added a nebulizer to Lilly's collection of medical equipment.  She had a cold this month, and the nebulizer treatments really helped her through it.  I thought the turtle mask was cute, but Lilly was not impressed.

Just a few more pictures to wrap up Lilly's 13th month:

"A cheerful heart is good medicine . . ." - Proverbs 17:22

Day 13 - Remembering Lilly - July 2011

This is my 13th 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.

July 4, 2011 - August 3, 2011

In yesterday's post, I neglected to write about Lilly's eye exam which she had.  Her eyes were very healthy.  Though they did not "bounce" as much, both eyes didn't always work together.  She did not track things well at all.  She only tracked lit up objects.  The doctor thought that was just a developmental delay.

Little Firecracker

The biggest news this month was Lilly turned 1 year old!!  In the Trisomy 18 world that is a HUGE milestone!  Of the low number of these babies that survive birth, only 10% make it to one year old.  God was so good to let us have Lilly that long!

Lilly had several celebrations.  One was with family.  We even had out-of-town relatives come for it. 

The other party was with people we go to church with.  When I was pregnant with Lilly, I declined a baby shower since I had no idea if she would even be born alive.  When she hit one, everyone wanted to celebrate with us.

So party, party, party (which meant lots of cake!) in the days leading to her birthday!

On Lilly's actual birthday, we went to visit my father-in-law in the hospital.  Sadly it was the last time the kids and I ever saw him again alive.  When we walked in with Lilly, he gave her the biggest smile, even though he couldn't talk.  Lilly did something new - she opened her first finger and held it straight for the first time.  Something which she did a lot from this day forward.

Also during Lilly's 12th month - she had chocolate for the first time!  Frank gave her a taste of warm melted chocolate chips when we were at our friends house.  She liked it so much, I later tracked down some super healthy dark chocolate for her.  We now call that special chocolate "Lilly chocolate."  Maybe the chocolate helped her finally hit the 12 pound mark!

Lilly enjoyed the slip 'n slide and her little green inflatable pool which we called "the lily pad."

 

Lilly liked being in her swing.

 

One challenge with Lilly being on continuous feeds was that that made her a very heavy wetter.  I used cloth diapers during the day and changed her frequently.  But at night, I put a disposable diaper on her because it held more.  But she still leaked a lot.  Finally I found a solution:  add a wool diaper cover over the disposable diaper.  After that it was rare that she leaked.

Disana wool diaper cover

Another fashionable accessory I added to Lilly were "button buddies."  They were great to use with her g-tube button.

 

Finally, here is a little tip I learned this month of Lilly's life, if you have a child with low muscle tone that is often constipated.  (Very common with Trisomy 18 children.)  Give them a dose of Karo syrup or molasses!  It usually helped Lilly.

 

"However, as it is written:

'What no eye has seen, what no ear has heard, and what no human mind has conceived”—
    the things God has prepared for those who love him—'" - 1 Corinthians 2:9