Fussy days

Weight check = 6 lbs. 9.5 oz.

We tried turning up the amount of milk Lilly was getting through her tube this week. However, she has been really fussy the past couple evenings and nights and since she's not usually like that unless she's hurting, we're guessing that that extra little amount of milk is just too much and her tummy hurts. (I pray that is all.)

(Top picture) Lilly looked so peaceful sleeping that it almost gave me the creeps. I had to make sure she was still breathing OK!

Big brother loves to gently pat Lilly. He's fascinated by her milk pump and whenever we thank God for Lilly he always chimes in with "and the pump!"

Miss Tiny Hiney

Weight check = 6 lbs. 8.5 ozs.

Today I was struck by how Lilly's thin arms are getting a little meat on them. (Second picture. First picture is posted just because it cracks me up. What do you think Lilly is saying to me in it?!)

In the past two weeks we've really noticed that Lilly is putting on weight. It is incredible what a pound will do. She no longer looks like a skeleton with skin that hangs and bones that stick out. She still is thin compared to normal babies, but she's really rounding out. The skin on her thighs, hips, and tooshie are filling out nicely. I noticed Sunday that though her tiny hiney still fit in my hand, it was finally widening and her hip bones don't jut out. (A couple nurses at the hospital in Fla. said that Lilly had the "tiniest hiney" they'd ever seen. We agreed!)


Lilly has a long way to go to being chubby, but by God's grace she's on her way. :)


"I will praise You, O LORD, with my whole heart; I will tell of all Your marvelous works. I will be glad and rejoice in You; I will sing praise to Your name, O Most High." Psalm 9:1-2

Smooth as butter!

I forgot to note on last night's blog that I had absolutely no trouble inserting the new NG tube into Lilly yesterday. It went in incredibly smoothly, on the first try, and Lilly didn't even make a peep! Not even the usual cough/choke as it passed down her throat. It really was from God! People at my church have been praying specially for this and so I want them to know - God has answered that prayer!

Singing the scriptures

Here are two pictures of Lilly from today. The one of her in her chair makes me laugh - she's all kicked back with her cute pink socks sticking out. In the other she's looking up at big sister while I'm reading aloud for homeschool.

Today's post is for those that have little ones at home or in their life and
want a suggestion to help those children hide the word of the Lord in their hearts. In the past few weeks we've gotten some children's music of scripture set to song. It has amazed me as to how fast my 2 year old son has been memorizing it. He can sing along with a lot of the songs and will walk around singing parts on his own too. (It helps that his vocabulary has just exploded in the past week.)

I play this (non-obnoxious) music several times a day for the children and have found that it even sticks in my brain. (Yay! It's usually hard for me to memorize anything anymore.) I have no idea what Lilly will be capable of mentally, but I do know that God's word will not return empty:

"So shall My word be that goes forth from My mouth; It shall not return to Me void, But it shall accomplish what I please, And it shall prosper in the thing for which I sent it." Isaiah 55:11

If you're interested, here is where we got the music:

From No Greater Joy: ABC Bible Verses Song CD - http://shop.nogreaterjoy.org/product_info.php/products_id/95

From Scripture Memory Fellowship: we have several of the available titles - my son's favorite is "I Am" -
http://scripturememoryfellowship.org/store?page=shop.browse&category_id=33

If you know of any other good one's (for children and/or adults) please let me know in the comments section!

The Pink Jedi Knight

Weight check = 6 lbs. 7.5 ozs.

I bundled Lilly up in her pink fleece jacket this afternoon for our walk. She made me think of a jedi knight (Star Wars) with her hood up. I imagined her having special powers and being able to lift objects with just her powerful eyesight. :)


"For the eyes of the LORD run to and fro throughout the whole earth, to show Himself strong on behalf of those whose heart is loyal to Him." - 2 Chronicles 16:9


Yesterday Lilly discovered her tongue. She's had a great time sticking it out really far and moving it all around.

A smile worth a million bucks ...

It has been hard to catch Lilly smiling and be able to take a picture! Today's picture is the best I've been able to do. She's not smiling a lot but it's enough to bring absolute joy to us. :)

Recently a couple brought a meal to us. Tucked in the bag with the food was this comforting message:

You are not alone - For God is with you.

You are not defenseless - For God is your protector.

You are not inadequate - For God is your sufficiency.

You are not useless -For God has a purpose for your life.

You are not worthless - For God sent His Son to die for you.

You are not without hope - For God has a place prepared for you.

You are not unloved - For God loves you with an everlasting love.

You are not rejected, or abandoned - For God calls you His own.

Happy 4 months birthday, Lilly!

Weight check = 6 lbs. 6 ozs.

Today Lilly turned 4 months old! God is so good and merciful to us to let us keep her longer. Praise Him!

My other two children wrote Lilly birthday wishes on our schoolroom whiteboard this morning. One thing my daughter wrote to Lilly was "you deserve wings." I agreed but said "not yet please!" God is obviously not done with Lilly yet. She's done so much to show His glory and has more to do.

"And now the LORD says, Who formed Me from the womb to be His Servant, To bring Jacob back to Him, So that Israel is gathered to Him (For I shall be glorious in the eyes of the LORD, And My God shall be My strength), ...." Isaiah 49:5

I love thinking that God formed Lilly to be His Servant. :)

I was so happy to learn today that [T-18] baby G. who had open heart surgery not too long ago, is doing very well and feeding from the bottle. Yay baby G.! I love cheering these children on. And praying for them too!

I've been in touch with a couple moms recently of trisomy 18 children. I mentioned to my husband that there is such instant bonding between us. He said that tragic events really do bond people together. He said that happens for him when he meets others who have had a close family member die in a car wreck.

Lilly is lying across me as I type and putting her knuckle into her mouth. She's started doing that a lot lately. She's still not opening her hands (other than sticking out her ring fingers at times) so the whole knuckle just goes into her mouth.