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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

Tuesday, December 28, 2010

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

Monday, December 27, 2010

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.

Saturday, December 25, 2010

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: )

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

Thursday, December 23, 2010

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

Tuesday, December 21, 2010

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.

Saturday, December 18, 2010

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

Monday, December 13, 2010

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

My 3 Christmas Gifts

My oldest daughter begged for me to post this picture.
As I titled this post I thought about there being parents out there that don't even want their own kids. And there are so many that would give anything for a child, yet can not have one. What a messed up world we live in.
"Come, Lord Jesus ..." Revelation 22:20

Saturday, December 11, 2010

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

Thursday, December 9, 2010

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."

Tuesday, December 7, 2010

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 ) 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:

Sunday, December 5, 2010

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:

Saturday, December 4, 2010

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!

Friday, December 3, 2010

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.