caption - title

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

Monday, December 9, 2013

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

No comments:

Post a Comment