Preparing for Christmas

Today was my favorite annual tradition of the Christmas season. The day we all went to the Christmas Tree Farm and found and cut a tree. It was so wonderful having Lilly with us! I remember shortly after she was born daring to hope that just maybe, the Lord would spare her and she would still be with us at Christmas time. (That is significant to me because so many trisomy 18 babies never even make it 6 months old. She'll be 6 months Jan. 4.)

Today was cold and raining off and on. So I bundled Lilly in several layers. Thankfully the rain stopped long enough for us to find our tree and take some pictures.

In today's second picture Lilly is being a "tree topper angel." As you can see - she slept the whole time!

When we got home we put up our tree lights and I gave the children each their annual Christmas ornament. (I give them each a new one every year so that they'll have their own collection of special ornaments when they move out one day.) I decided Lilly's first ornament would be an angel since she's my earth angel.

Again, I'm just so thankful and thrilled that Lilly is here at this time with us!

"It is good to give thanks to the LORD, And to sing praises to Your name, O Most High; To declare Your lovingkindness in the morning, And Your faithfulness every night, . . . ." - Psalm 92:1-2

Don't do it sneaky Lilly!

Check out Lilly's mischievous face in this first picture and what her hand is touching. The second picture shows her firmly grasping the NG tube. She has been working really hard lately to pull it out. I often have to move her hand away from her face as she rubs on the tube and tape, and hooks the tube if she can.

Lilly has pulled out her tube a several times now. She does not like that tube! (I don't blame her.) It's quite traumatic for her to pull it out and then have me put one right back in. (And the last time I did it, she was fighting it and the whole thing was traumatic on her daddy who was watching.)

We had something weird happen last week. The pump didn't seem to be pushing the milk through the milk tube correctly (there were lots of gaps). In the NG tube (hooked to the milk tube) it looked like stomach acid was backing up into it. The pump would try to forward the milk but it would stop and the yellow stuff from in Lilly would come back up reversing things. Yuck. I changed the milk bag and NG tube and then everything worked properly.

"Tube Changing Day" is currently Mondays and I don't appreciate Lilly "helping" by pulling it out earlier. I'm really hoping that I'll get to do the rest of the tube changes when she's napping since I've found that it's incredibly easy to do when she's relaxed. Because if she's awake and feisty then I really need supernatural help!

"God is our refuge and strength, A very present help in trouble. Therefore we will not fear, Even though the earth be removed, And though the mountains be carried into the midst of the sea;" [and NG tubes need changing!] - Psalm 46:1-2

She's growing!

My oldest daughter got to dress Lilly today. She loves to put bows in Lilly's hair. It's so cute but doesn't stay in too long. Sadly Lilly's hair isn't as thick as it once was. We can actually see where she's rubbed hair off. (Hair on the changing table and on her bouncy seat.)

Lilly had a checkup with her pediatrician today. The nurse and the doctor are quite proud of how Lilly is growing. Her height is 20.5 inches, weight 7 lbs., and head circumference 36.5 cm. (Yay - that means her brain is growing!) The doctor said she had talked to Lilly's cardiologist this week and they are both excited to see what going to happen with Lilly.

We've had a couple people ask about Lilly's hospital bills. So far Samaritan Ministries, our health insurance alternative, is covering all the bills. We seem to be getting reimbursement checks from Samaritan members in the mail almost daily. Almost every check has a card, prayer, and/or scripture with it. I really like this quote from Charles Spurgeon on a card today:

"Our Lord, who walked among the sick, still dispenses His healing touch. The earth is full of souls healed by our beloved Physician."

7 lbs.!! 7 lbs.!! 7 lbs.!!

Weight check = 7 lbs. 0.5 oz. !!!!!!

"Give thanks to the Lord, for He is so good. His faithful love endures forever." 2 Chronicles 5:13

I really feel like Lilly has reached a huge milestone by finally hitting 7 lbs.! I admit I've been getting frustrated because her weight gain seems to have really slowed down. (I suppose that's a reason why doctors say trisomy 18 children "fail to thrive.") But the other day I was reminded by Ann Barnes, the author of a care book for families of trisomy 18 children (Care of the Infant and Child with Trisomy 18 or Trisomy 13 - available from http://www.trisomy.org/ ) that it's normal for these babies to gain weight slowly. In fact, her precious T-18 daughter, weighed about 5 lbs. at birth and it took her a year to gain 10 lbs. (Megan lived almost 20 years! How incredibly encouraging is that?!)

Though Lilly still holds her hands constantly clenched, other than sticking up her ring fingers at times, she is slowly loosening them some. For the past few days she has been sticking up the last 3 fingers on her left hand at times. I still like to put her "diplomas" (rolled up washcloth bits) in her hands to stretch her fingers and give her palms a break, but she drops them a lot now. A good sign!

I've made a discovery about inserting Lilly's NG tube. If she's sound asleep I can easily slip the old one out and the new one in without her ever waking. However if she's awake and fussing - then it is really hard to do. So from now one, when I have the option, I will change it during one of her naps.


In today's pictures, Lilly is wearing the apple hat hand and Mary Jane's knitted by K, available for purchase from: http://www.etsy.com/shop/craftingadoptions

The Christmas Holly Hobbie

Many people thought Lilly looked like a baby doll today. (Or as Lilly's sister said - she looked like "Holly Hobbie.") The camera/lighting does not do justice to how cute this red checked Christmas dress looks on her.

One of my new friends - A., that I met through this blog, loaned Lilly two of her daughter's Christmas dresses. This is one. It's a preemie size and thankfully it is really about too small!

I think the reason Lilly didn't gain weight this week is that she had a growth spurt. This morning I packed up all her sleepers that were "newborn" size. She's now officially in size 0-3 months. We increased the amount of milk she is getting yesterday and thankfully she's handling it well this time.

Lilly's red knitted Mary Jane's were hand knitted by my friend K. She sells them on her Etsy website: http://www.etsy.com/shop/craftingadoptions

Happy 5 month birthday, Lilly!

Lilly is 5 months old today! I feel so much joy and relief that I feel like bursting into tears.

To make today extra special for her, God sent snow! Great big wonderful snowflakes. When it started, I grabbed Lilly, wrapped her in her quilt, and put a hat on her and dashed out the door. I've learned that where we live it can start snowing and then stop by the time you get your jacket and gloves on. Unfortunately you can't see the snow in this picture, but it was snowing. It finally started sticking after awhile but there was no accumulation.

Lilly doesn't seem to have gained any weight this week, so this morning my husband programmed the feed rate on her pump to 19 milliliters an hour. That's only an increase of one milliliter, but even tiny amounts can really upset Lilly's tummy. Lord willing, she will be able to handle this amount now. Gotta get more weight on her!

Bundling up and banquets

Here are several pictures from yesterday.

We went for our after lunch walk and it was in the upper 40s. I have trouble figuring out how much to bundle little Lilly up when it's cold out and how many blankets to tuck around her in the stroller. So whenever we get home I like to take her inside and check how her skin feels. Too warm or too cold - then I can adjust for next time.

Lilly loves her stroller rides which is great because we all need the fresh air and I need the exercise. We live in a great neighborhood for walking, which is a blessing. I'm not the type that would regularly drive somewhere else to walk.




In the last two pictures, Lilly and big sister are dressed up for sister's annual Keepers At Home banquet. They even have on matching socks, courtesy of a co-worker of my husband. (Keepers At Home is like a club. We meet with our group of homeschooling moms and daughters once a month a learn a new skill.)



Lilly is also wearing the cutest little knitted Mary Janes. :) They were knitted by my friend K. (who made my "Lilly Bag"). K. sells black and also red knitted Mary Janes at her Etsy shop, where all profits go to help orphans. http://www.etsy.com/shop/craftingadoptions