Weight gain

Weight check = 7 lbs. 10 oz.

Seems like a big weight gain from Christmas Eve, which was 7 lbs. 4 oz. Maybe the new scale is still getting adjusted. But we sure like thinking 7 lbs. 10 oz. is correct! And it really makes more sense.


Today Lilly is wearing a purple hat that her big sister wore the day after she was born.

Lilly was really fussy last night - crying about every hour. She'd stop whenever I changed her diaper. That was a lot of diaper changes! I hope that doesn't become a nighttime habit. I already change her diaper 1-2 times a night because if I don't, she'll leak right through her disposable diaper and diaper cover. She's on continuous feed so that mean lots of wet diapers.

Lilly is, as my husband puts it, "a little lady." She does not like having on a wet or dirty diaper and will often cry if we don't change her quickly enough. My sister-in-law and I both used infant potty training with our children that are now toddlers. (It saves a lot of diapers!) One thing none of our children were very good at was developing a signal to tell us when they needed to go. (Though the book we consulted said they would.) I joked the other day that it would be funny if Lilly were the one to give me a signal when it was time.

We were reflecting today, once again, how merciful God has been to us with Lilly. She will be 6 months old in one week!

As King David prayed to the Lord, I think this is very fitting for Lilly too for God's continued protection of her:

"Keep me as the apple of your eye; hide me in the shadow of your wings." Psalm 17:8

The Snow Princess

We had snow yesterday! It was absolutely beautiful as the snow fell from the sky and covered the trees, ground, and everything else!

"The heavens declare the glory of God; the skies proclaim the work of his hands." - Psalm 19:1

Today was sunny and warmer so I bundled up Lilly and took her out in the snow. In spite of what her pictures look like - she was actually awake. It was just too bright for her.

We increased her milk intake on the pump to 20 mLs an hour on Christmas Eve. She seems to be handling it pretty well. Hopefully that will get some more weight on her.

Merry Christmas from Lilly!

Merry Christmas!

My very best Christmas present today was having Lilly with us! The Lord has been so good and merciful to us. :)

We had a nice quiet Christmas at home today. (First picture) Lilly was sleeping so soundly when we were ready to open presents that we just let her sleep.

Lilly's presents from us were a smocked dress (Petit Ami dresses on Ebay are the best!) and a silver teething ring, shaped like a duck.

I recently read that silver has anti-bacterial properties and figure Lilly needs all the help she can get, since she does not have a good immune system. Here is a brief description: http://hubpages.com/hub/Feed-your-Baby-with-a-Silver-Spoon )

Every year I buy each of my children their own Christmas tree ornament so that one day they'll have a special collection when they start their own family. I couldn't leave Lilly out of course and I got her an ornament of an angel holding a baby.

I carried the angel theme over to her Christmas stocking, pictured here. I call Lilly my "earth angel."

The last two pictures today show Lilly with her new silver teether. She still clenches her hands tight enough that it's easy to get her to hold things like the teether. Plus I held it to her mouth several times today and she really enjoyed sucking on the duck's tail.

"Now there were in the same country shepherds living out in the fields, keeping watch over their flock by night. And behold, an angel of the Lord stood before them, and the glory of the Lord shone around them, and they were greatly afraid. Then the angel said to them, “Do not be afraid, for behold, I bring you good tidings of great joy which will be to all people.
For there is born to you this day in the city of David a Savior, who is Christ the Lord. And this will be the sign to you: You will find a Babe wrapped in swaddling cloths, lying in a manger.” And suddenly there was with the angel a multitude of the heavenly host praising God and saying: “ Glory to God in the highest, And on earth peace, goodwill toward men!” - Luke 2:8-14

Sneaky Lilly's newest tactic

Weight check - 7 lbs. 4 oz. (same weight as last week but we have a new scale now so I don't know if it's calibrated the same or if she really just didn't gain).

In today's two pictures, Lilly is wearing a really cute Snoopy Christmas dress my aunt made her. What's extra cute about this dress is that my aunt also made one for Lilly's big sister and her Kewpie doll, and Lilly's two girl cousins. We lined up all 4 girls tonight (we forgot Kewpie!) and got some pictures. But wow - it is hard to get a good picture when there's lots of little kids in the group! Someone is always squirming, making a face, etc.

Thursday is the current "tube changing day." I pulled Lilly's NG tube out this morning, gave her a bath, then laid her down so she could take a nap. My current new tube insertion strategy is to put a new tube in her while she's sleeping because it is so easy then. (She really fights tube insertion if she's awake and has figured out how to push it out when I'm trying to push it down in her.) I'm afraid Lilly must have figured out my plan because she stayed awake for 7 hours! (A first I think.) She only dozed off once and the awoke full force once the tube touched her. I threw my plan out the window and tried a few times throughout the morning/afternoon but it just didn't work until she finally was so exhausted she was falling asleep.


It was pretty frustrating especially knowing she wasn't being fed normally during that time. I was imagining the weight falling off her. She did seem to get hungry after awhile. She ended up taking a tiny amount through a bottle and even a tiny amount nursing (for the first time ever). That reminded me that I do need to work with her on those two methods as we really pray she'll feed normally after her surgery. I admit I haven't been very dedicated to it though because she either doesn't seem interested or else spits up after.

I certainly won't ever take a baby feeding normally for granted ever again!

We prayed about all this several times today - together and individually. I admit - I was getting very frustrated with God not doing something to help me the way I wanted very quickly. But perhaps, He was trying to show me the importance of practicing with Lilly to teach her to eat normally.

"Wait on the LORD; Be of good courage, And He shall strengthen your heart; Wait, I say, on the LORD!" - Psalm 27:14

Gingham girls

A co-worker of my husband noticed Lilly wearing the gingham Christmas dress in an earlier post. She sweetly passed on her own daughter's gingham dress to my daughter T., so that T. would have a dress to match Lilly. (T. is obsessed with matching Lilly so she loved this!) Check out Lilly's double chin in the picture! How can a baby this small have a double chin??!!

In my last post I mentioned Lilly's "bouncing eyes" (where she has trouble focusing at times). A mama of a Trisomy 18 daughter (19 months old) e-mailed me to say her daughter used to have that problem but that she didn't anymore. That was good to hear!

The Christmas season always seems to be the busiest time of the year. I had Lilly to help me this year. She patiently sat for several hours with me as I worked on Christmas cards. (Lilly now fits nicely in the moby wrap which is much more comfy for me than the ring sling.)

My daughter T. and I like to follow the blogs of several little T-18 girls. T. commented this evening that there seem to be more girl T-18 babies that survive than boys. She is absolutely right. I'm not sure why that is, but it is a fact.

Focus ... steady ... bullseye ...

Weight check = not sure. We're "between scales" right now. Should be able to start checking again early next week.

My sister-in-law was over briefly this afternoon and commented on Lilly's eyes and how they shook. (I don't remember if I ever mentioned this on the blog before, so I thought I would explain it.) I call them "bouncing eyes." Sometimes she focuses well and holds her eyes steady. Other times her eyes "bounce" up and down rapidly as she looks at something. (Very small up and down movements.)

I'm trying to help her practice focusing her eyes more by giving her things to look at. For example, I recently printed off several shooting targets for her. It's amazing how much she enjoys studying the targets. She will look intently at them for 30 minutes at a time. This picture shows her looking at her favorite target.

Because of the Trisomy 18, Lilly is developmentally delayed in most things. But Lord willing, she'll get that eye thing worked out before too much longer.


Today I found the most beautiful little red velvety dress for Lilly at the thrift shop. (Laura Ashley brand.) It was only 50 cents! I couldn't believe it as it would easily cost $30 in a regular store. It's too big for her now but it will hopefully fit her next winter. I was just so excited about my bargain and felt elated as I left the thrift shop. I realized later that part of my joy in my purchase is that I bought something for Lilly to use in the future. Ever since I found out she had Trisomy 18, I have been very hesitant to buy anything that she can't use right NOW. But today I realized that I no longer have that constant fear that she's getting ready to die. It is true I have no idea how long she will be with us. But that dark shadow just isn't so oppressing anymore. (Thank you Lord!)

"The Lord God is our light and protector. He gives us grace and glory. No good thing will He withhold from those who do what is right. O Lord Almighty, happy are those who trust in you!" - Psalm 84:11-12

The happy seat

Weight check = 7 lbs. 4.5 ozs.

A couple things make Lilly consistently smile. The first is her daddy. The second is being in her bouncy seat. Hanging over her seat on an arch is a stuffed snail, turtle, and musical frog. Whenever we put her in this seat she just starts smiling.

This is so exciting to me because I can see the recognition in her eyes when she sees the hanging animals. And since we don't know exactly what's going on in her brain, it's a great sign.

When Lilly was in the hospital in Florida, I spoke by phone to a local woman that was pregnant with a trisomy 18 baby. Today I learned that she lost the baby in utero. News like that is so sobering. There is always the sorrow when a baby dies. But how do you process it when it's a baby that the medical profession has said is "incompatible with life?" Is it a bit of relief mingled with sorrow? Or does it make it all the more sad? Life can be so confusing.

It made me so grateful once again that Lilly is alive and doing so well.

“For My thoughts are not your thoughts, Nor are your ways My ways,” says the LORD. “For as the heavens are higher than the earth, So are My ways higher than your ways, And My thoughts than your thoughts. " Isaiah 55:8-9