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

Day 12 - Remembering Lilly - June 2011

This is my 12th 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.

 June 4, 2011 - July 3, 2011

Thankfully Lilly's 11th month was pretty easy.  11 months old and she hit 11 pounds!  Lilly continued in physical therapy and we began the process to start her in occupational therapy.

I love these pictures of Lilly wearing an old vintage white dress that I wore as a baby.

Sneaky Lilly!

Lilly began to suck her thumb some, which was an accomplishment because she would straighten her thumb in order to get it into her mouth.

 

Lilly liked to talk to herself in her little mirror.

 

Lilly had her first swimming adventure at Jordan Lake:

Lilly ready to go in her sporty bathing suit

Protective hat and sunglasses - in mama's swim wrap "Let's swim!"

Tabby dressed Lilly up one day and made a big sign that said "Renewed by God."  She explained that God kept renewing Lilly like we renewed library books.  (Tabby was 10 at this time.)

 

 Because Lilly's immune system was so fragile, we gave her baths AFTER church, instead of before.  (We always bathed her asap after being out in public anywhere.)

Ready for church!

Squeaky clean (and germ free!) from the bath!

Just a couple other of my favorite pictures from the month:

 

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." - John 14:27

Day 11 - Remembering Lilly - May 2011

This is my 11th 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.

May 4, 2011 - June 3, 2011

 Lilly officially started physical therapy and LOVED it.  She had it once a week, at our home.  We had the sweetest therapist that was so good with her.  We still miss her!

"Look Mama!  No NG tube!"

 Lilly had g-tube surgery and had her very first feeding through her new MIC-KEY  g-tube on the day she turned 10 months old. 

Lilly also had a broncoscopy, a procedure to check and see if there was anything, besides her tongue, that caused her obstructive apnea.  The results were so good that the pulmonologist was amazed.  (Many T-18 children have "floppy passages" in their airway.)  Lilly only had a tiny bit down in an area that didn't interfere with anything.  Her adenoids looked good and she had very little sign of reflux.

Lilly also had a hearing test.  From that we learned Lilly's hearing was impaired.  (Also common with T-18 children.)  Her ear canals were so tiny they couldn't even see her eardrums.  So the audiologist bypassed the ear canal and middle ear and went to the cochlea.  That response was much better.  That meant sound got lost on the way to Lilly's ear.  It also meant that as Lilly grew bigger, and her ear canals grew, she could hear much better.  (She did hear us when we talked to her though - she would turn her head in response to our voices.)

Lilly did NOT enjoy hospitals and was pretty grumpy by the time she was released.  Sadly for Lilly though, we were in the emergency room with her two days later.  Her heart was racing really high and her breathing not right.  Poor baby was very sick, with some sort of virus.  I figured she had picked it up in the hospital during her g-tube stay.

intubated and hooked up to so many machines I lost count

The next day, Mother's Day, Lilly almost died.  I hate thinking about that day because I start feeling guilty because I didn't insist they use a C-PAP to give Lilly oxygen instead of a high powered cannula.  I knew her breathing still seemed a bit off, but figured they knew what was going on.  (Parents of T-18 children - always trust your instinct! The doctors just don't have experience with our special kids!)  Lilly's heart suddenly dropped and almost stopped. A wonderful team of nurses and doctors almost immediately crashed into the room in response to Lilly's code blue and saved her life.  They didn't have much hope though, that the same thing would not happen again.

But "Lil Fighter" (as she was soon dubbed) proved them wrong.

It was a happy day when we left the hospital.  Here's Lilly ready to go.  We called the 2nd picture "the end."

Lilly was so happy to be home again!

Soon learned a new trick.  While sitting in her bouncey seat, she began to reach for and pull the handle on the frog toy, making its music play.  We all cheered for her every time she did that. 

" See that you do not despise one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven." - Matthew 18:10

Day 10 - Remembering Lilly - April 2011

This is my 10th 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.

April 4, 2011 - May 3, 2011

Lilly's chubby little legs were standing strong as she welcomed in her 9 month birthday.  She could fully support her weight on her legs, but I still had to hold her upper half straight.  That was pretty good for a T-18 baby!

We got Lilly's last sleep study results back and they were drastically better.  She only had two slight "respiratory events" the whole night.  Because of that, her pulmonologist said Lilly should use 1/2 litre of oxygen at night while she slept.  So the oxygen supplies, along with a pulse ox, were soon delivered.

Lilly was NOT impressed with having an oxygen cannula taped to her face at night.  And it was rather tricky to keep it in place, and keep her sleeping on her side.

One of my favorite pictures of Lilly from that month:

I got a special chair off Ebay for Lilly.  It held her up well into a sitting position.  She loved seeing everything from a different view:

 

Lilly had a developmental evaluation for physical therapy.  Physically she was only at the level of a one month old.  But that was ok.  Lilly knew she was loved anyway!

It was a blessing to have our Easter Lilly with us for one Easter:

 "Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die. Do you believe this?” - John 11:25-26