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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

Thursday, January 20, 2011

Always watching ...

Weight check = 8 lbs. 5 oz.

As you can see in today's picture, Lilly is sleeping with her eyes cracked open. (There's no sneaking up on her!) She does this a lot. I have a problem with dry eyes so I often think it can't be good for her to have her eyes open a long time without blinking.

You can also see a stripe of redness on her cheek. That was from where the tube was a day or two before. (I'm finding that pure cocoa butter is clearing that up pretty well.)
I took Lilly to the medical supply store to see if they had any recommendations regarding how the tape has been irritating her skin lately. It was funny - when I walked in with Lilly the lady working there said she thought at first I was carrying a baby doll. She was afraid to say anything since Lilly is so young, without her pediatrician's approval. So now Lilly's pediatrician and nurse are looking into it. Not sure I want to try some of the random ideas I've heard about online, especially after seeing some of the products in person.

If you have had a child on an NG tube - what did you use for securing the tube to their face and would you recommend it? I am currently using Tegaderm tape for Lilly. It peels off wonderfully - she doesn't seem to have any discomfort at all.

All this (plus a number of other things) has made me want very badly for Lilly to learn to either bottlefeed or breastfeed well enough so we can just be done with the tube/pump. So lately she has been having daily homeschool lessons in those things. If you would say a prayer that she would learn to eat normally (without burning too many calories!) we would be grateful!

"You will keep in perfect peace all who trust in you, whose thoughts are fixed on you! Trust in the Lord always, for the Lord God is the eternal rock." Isaiah 26:3-4


  1. Oh Lilly!

    You do look sort of like a doll!

  2. Gage has a g-tube so no advice on the securing the NG tube but as far as the irritation I would suggest aquaphor. The pediatrician recommended it to us, especially for areas they could rub and get in their mouth, aquaphor is safe. We use it for any skin irritation dryness and diaper rash. Good luck!

  3. Hi Sweet Lilly! I miss you already.

  4. I have prayed for you today dear Lilly, all the way over here in New Zealand. Kisses from Carol

  5. I had a friend once that slept with her eyes open..she lived to 87 years so guess it is not to bad to do
    hugges and kisses my Lilly and her mom, dad, brother and precious sister...

  6. Lisa, we got your Christmas card and have been following Lilly's blog. My 12-year old daughter Madeleine has read the entire blog and sent it to several of her friends asking them to add your family to their prayers. She always lets me know if you've updated your blog and loves the photos. Having a younger brother born with Down Syndrome and multiple health complications, your story brings me back to the many challenges my parents faced. Just know that you are in our prayers lifting you up during this journey.

  7. We have a 2 year old girl, Faith, with Trisomy 18. We have been through many things you are probably facing. We would love to offer any helpful advice. We had the same problem with Faith keeping her eyes open while sleeping which she is no longer doing. Feel free to contact us at make sure to put Trisomy 18 Lilly in the subject so we don't miss it as junk mail. May the0 Lord bless little Lilly.

  8. Oh...Make sure you are on a high calorie diet with her. Should be 30 calories per oz, but need to add a supplement called polycose which helps cut down on the protein level so as to protect the kidneys from damage. High calorie diets have shown to help the heart close holes in some studies. If you want to know any recipes, let us know.