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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

Monday, December 10, 2012

Day 12: Medical equipment

This is is my twelfth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

I grew up in a healthy family and the most "advanced medical equipment" that I had any experience with was allergy shots when I was younger.  So when Lilly came along, with all her special needs, I had a crash course on learning about an array of medical equipment and how to use it for Lilly.  I still am amazed at how many medical things that Frank, Tabby, and I learned during her life.  Even Hunter knew the procedure for cleaning Lilly's feeding pump and how to turn on and off her equipment.  Though much of this equipment was rather foreign to us at first, we learned that it is all very common in the lives of those with Trisomy 18.

When Lilly was 2 months old, she was losing weight because she did not have the strength to eat enough, due to her heart.  So a nasogastric tube (NG tube) was inserted into her nose and down into her stomach.  It was hooked to a Kangaroo Joey feeding pump and that was how she got her milk.  I had to insert a new NG tube each week into Lilly.  I'm not sure which if us hated that procedure more!

This is Lilly's feeding pump with bag of milk.  Tubing ran from it and attached to the outside end of her NG tube.  The pump was hooked to a pole on wheels.  We had a little backpack to put the pump and milk in when we went out.  Lilly was on "continuous feed" for a long time.  That meant milk went slowly into her little tummy all day and night long.


When Lilly was 10 months old, she had had enough of the NG tube.  (She would pull it out at times.)  We had been holding off on gastronomy tube (g-tube) surgery hoping that she would learn to eat by mouth.  But she had forgotten her suck instinct, and only liked coconut oil in her mouth.  I finally gave up pushing for that at that time.  So she had surgery to insert a g-tube into her stomach.  She liked that sooooo much more.  No itching tape on her face or annoying tube down her nose and throat.

Hunter was so fascinated with the Kangaroo Joey feeding pump, he made a toy one for his stuffed dog:

Most babies with Trisomy 18 clench their hands into fists.  Little hand splints that help train them to hold their hands open more are not uncommon.  Here is Lilly modeling hers, which she wore only at night:

For part of her life, Lilly was on oxygen at night, or when she was very sick.  So we learned about cannulas (the part that hooks under her nose) and oxygen condensers (the big hot, noisy machine that pushes the oxygen through tubing and in and out of the cannula into the nose).  After much searching, I finally found a tape that didn't tear her skin, to hold it onto her face.

Whenever Lilly began to struggle with any type of respiratory illness, I started her on nebulizer treatments.  Many people with asthmatic children are familiar with these machines, but I had no experience with one.  Lilly was not impressed with them, but they definitely helped!  (They blow a mist of medicine and the person with the mask on breathes it in to open the breathing passages and lungs.)

One more "essential" piece of equipment was a pulse oximeter (pulse ox).  When Lilly was hooked up to it (by her toe) we could see what her oxygen saturation level was and also her heart rate.  We used it when she was sick as a monitor because if the levels got too bad - we had to take her to the emergency room.  This machine was an extremely helpful yet also very nerve wracking as it could give false readings if Lilly kicked her foot too much or moved a lot.  We rented one but then finally ended up buying one.

That was another piece of equipment that Hunter liked so much that he made one for his dog Sam:

So the above was our "home medical equipment."  Of course hospitals have a ton more - Lilly was hospitalized several times - nearly dying each time.  I was always amazed at the number of machines they would check her with or hook her up to there.

Lilly found hospitals and equipment rather annoying, even though they helped her so much.  But most of the time she really was a happy and content little girl:

"And I will pray the Father, and He will give you another Helper [Holy Spirit], that He may abide with you forever,. . ." - John 14:16


  1. Medical equipment are very helpful to help in monitoring one’s health. Also, it is specially designed to aid in the diagnosis. Anyway, reading about Lily's story brings tears to my eyes. I'll be praying for her.

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