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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, September 20, 2010

Mama I still don't like it!

Weight check = the same as yesterday

The feeding tube occupied our day today. I had to learn to insert the tube into Lilly's nose and down into her stomach. I did NOT like doing that. The nurse found a smaller tube for Lilly which does look much better on her and is hopefully more comfortable. But Lilly still does NOT like it. (Who could blame her?)

The Dr. decided that getting Lilly to conserve calories is much more important than having Lilly bottle feed 15 minutes before the tube to practice her sucking skills. The Dr. said Lilly's two main ways of burning calories right now are: digesting and eating. (These lead to fussiness, spitups, and gas and that burns even more calories.)

So in hopes of eliminating some of those problems, the decision was made to only feed Lilly by tube right now, and to up the amount of formula added into the breastmilk. Plus it would be a "continuous feeding." This is considered to be the gentlest way to feed Lilly. It means she's now hooked up to feed 20 hours a day. (Milk slowly drips from a bag into the feeding tube.) They started it today and Lilly didn't respond too badly overall.

A medical supply company brought us pump that Lilly's milk bag and tube would be hooked up to when we leave the hospital and taught us how to use it. It's not that hard, but all this stuff is so foreign to me, I just hope I get it right when/if Lilly comes home on it.

The occupational therapist came and saw Lilly today and did some stretching of her arms and legs. She still wants to get some splints made for Lilly's hands.

In addition to the two medications Lilly is taking for heart failure and for blood pressure, she is on antibiotic drops to clear up all the goop in her eyes, a gas pain alleviation medicine, and another drug to help keep the spit up (stomach acid) from burning her throat. Plus a multivitamin with iron to try and up her red blood cell count. Goodness! I'm not much of a fan of medication anyway, so this is just mind boggling that my wee little girl is on all this stuff.

As I was flipping through a homeschool magazine this afternoon, one article had several scriptures that really spoke to me with what I needed to hear today. Two of the verses:
Psalm 27:14: Wait on the Lord: be of good courage, and He shall strengthen thine heart: wait, I say, on the Lord.
Isaiah 40:31: But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

I know I'm being pretty detailed and wordy in some of these posts. But a huge reason why is because this blog has become a Lilly journal for me to remember all this stuff. I had been keeping a notebook and just writing out important things by hand. But this has taken over much of that because my time is so limited. Plus I like having the pictures with my posts. I found out that I can have my posts printed into a bound book. I plan on doing that at some point. It will be a wonderful Lilly keepsake!


  1. Oh wow. I am impressed! I am not nurse material and inserting the tube into her nose would be nearly impossible for me, although, you do what you have to do. And those of us that are far away, like the details and the wordiness of your posts. :)
    Hang in there Lilly!!! I love you.

  2. Lisa, I'm so glad you're writing all of these details. It's all so interesting and helpful when praying for your family. And you're right, it will be great to have as a journal/keepsake.

  3. Lisa,
    We're also glad for all the words and details! We feel so in touch this way and know better how to pray specifically. You have been such an inspiration to us! Miss you and wish I could e-mail a huge hug!

  4. I love your details and description. Helps us feel close even though we're far away!!!! Hope the continuous feeds is a great success!!!!

  5. L, I saw an eagle today. We were working at the river and a bald eagle lit on the bare branch, paused briefly and the flew...and to have that comparison to be read by you is so touching...Isaiah's description of how we will 'fly' is so meaningful isn't it. So on Lilly's next river visit, maybe that eagle will come back for her to see. I love you

  6. Lisa, you don't know me but I have a T18 baby, too. There was a link on the facebook T18 mommies page. Prayers are with you. I know tubes aren't much fun. My little one, Aaron, has been on one from the beginning. He was the same size as Lilly is now. What size tube are they using? My little one uses either a french 5 or 6.5. They are really tiny, and other than putting it down, it doesn't bother him at all. But after a PICU stay and being taken off feeds, they tried a larger one. He fought and cried and desated over and over until I convinced them to find a smaller one. Lilly's looks like the size they were trying to use. Maybe she would be able to put more energy into growing if it didn't iritate her so much. Let me know if you want more info. Again, prayers are with you and your baby and your family. God Bless, Rebekah