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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, September 16, 2010

Feeding tubes feel soooooo annoying!

Weight check = something in kilograms which I don't know in pounds! However Lilly's weight was down - again - this morning. :(

So the hospital Dr. decided to try a feeding tube after all. So at "high noon" Lilly got a "NG" tube inserted into her nose. It goes all the way down into her stomach.

To say that she doesn't care for it is an understatement as seen in this picture. I'm sure it does feel awful though it sounds like she should get used to it. She cries every time it is moved or bumped. What makes it really frustrating for her is that it limits her favorite sleeping position.

To keep up Lilly's "sucking skills" she gets her bottle for 15 minutes to eat. Then, in order to have her conserve energy and to be sure she finishes the bottle, the rest of the milk is put into a big syringe which is inserted into the end of the feeding tube. The syringe is then either slowly pushed to give her the milk through the tube, or hooked up to a pump which does the work. After all the milk is given, some sterile water is pushed through the tube to clean it out. We then have to be sure to keep her head elevated for 30 minutes to avoid reflux. Thankfully she has been keeping the milk down. (Spit up from these tubes is very common.)

This other pictures shows Lilly in her hospital bed. Seeing her laying in it is actually a rare thing. My husband or I are almost always holding her.

Lilly had a chest x-ray this morning before I got back to the hospital. My husband said it looked awful how they had to do it and he was glad I didn't have to see. We're paying that it didn't turn up anything else wrong with Lilly.

We also worked some with Lilly and a speech therapist today. No Lilly isn't working on speaking proper English yet! But it seems that a "speech therapist" here also works with eating issues. Working with her was just like working with a lactation nurse back home. She watched how we bottle fed Lilly and made a few suggestions. One was to slightly tweak the main feeding position we use. Another was to switch to a "slow flow" bottle nipple. I had been using "medium flow" because I thought that if Lilly didn't have to work so hard to drink, then that would save calories. But after seeing Lilly drink from both, the speech therapist felt that the slow flow nipple was better for her because of how she drank and her current condition.

Lilly was put on some antibiotic eye drops today too. She has almost constant discharge from her eyes. It's been going on long enough that it doesn't seem likely it's just blocked tear ducts anymore. (I had been dripping some breastmilk from the bottles into Lilly's eyes as that (amazingly!) can clear up eye infections. But either I just didn't do it long enough or her case was too bad, because it never completely knocked it out.)

Today again seemed to be constant activity with doctors and nurses and volunteers and other workers coming in and out of Lilly's room. Not sure how she is supposed to really rest with all that activity!

My husband and I have both brought a bunch of books to read. I figured we'd mainly be sitting in the room, holding Lilly, and reading to pass the time. Goodness - it's usually too busy for that! Or sometimes when it is quite, our minds are racing too much with everything going on to really settle down. I did, however, manage to read the book of Habakkuk today. Habakkuk 1:5b is such an awesome and encouraging verse (it is God speaking to Habakkuk): "For I am going to do something in your days that you would not believe, even if you were told." I started thinking about all the amazing surprises God has blessed me with already in my life. I can't wait to see what all He's doing in Lilly's life!

As I left the hospital tonight, I really felt sympathy for other families in situations like ours. It's so hard to have one child in the hospital and my others elsewhere. I'm very thankful they are at my aunt's house of course - and they're both having fun - but it's so hard not to have all my kids together with me. When I'm at the hospital I miss the ones at home. When I'm home I miss Lilly. This is all teaching me to appreciate our days together at our home all the more!

And finally, this is just a bit of humor for those of you that know what our family vehicle is. Now usually I really enjoy driving our "tank." But I have discovered I do NOT like driving it in parking garages! It's really rather scary. I had to drive up 5 levels this morning and the ceiling was sooooo low that I found myself literally ducking and cringing in a number of places. (Yeah I know - like that will do any good!) The top of the vehicle (luggage rack bolts) actually scraped in a couple places. I found myself driving painstakingly slow around every turn. They obviously didn't build those garages for tanks like ours!


  1. Oh what torture it looks like. I pray this works and she quickly adapts. I am sure it is such a relief to actually talk to people who know something about her type of problems (therapists, doctors, nurses).
    Thanks so much for the updates. I know its hard. You have to be so tired. But we do so appreciate it.

  2. your cousin "R" felt the same way with feeding tubes!!!!

  3. at last something is being done in an effort to help her. We find it hard to watch but yet we are glad...very mixed emotions ..'sigh'..and praise God