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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, November 30, 2010

My "Lilly Bag"

Shortly before Lilly's birth I bought a tote bag from my sweet friend K. I had actually bought one for my oldest daughter earlier as a gift. She loved the tote bag so much and we found it was very sturdy. So I decided I wanted one too. K. let me look through her stacks of material to decide what I liked best. For some reason I was pulled to a print with American flags and cowboys. I have no idea why other than I liked old stories about cowboys. But I took the bag home and decided I would pack some of my stuff for the hospital in it, in preparation for Lilly's birth.

Lilly was due June 17 but held off and made her entrance into the world on July 4. (She decided that would be her "Independence Day.") As my husband picked up my tote bag at the hospital for me, I suddenly smiled at the American flags all over the bag. It suddenly seemed so fitting when I thought of the bag with the date of Lilly's birth. I dubbed the bag my "Lilly Bag."

When Lilly spent her 23 days in the hospital in Fla., every day I went to the hospital and I had my "Lilly Bag" with me. It brought me comfort in a funny way. Each morning I packed that bag full of books and my giant 3-ring binder full of Lilly's medical notes. It held up great.

When we got home I told my friend K. that I'd like to buy some more from her. One for my son, one for Lilly, and one extra. Once again I sat down with K.'s big stack of material. So many wonderful choices! However Lilly's bag was the easiest to pick. The material has a pond scene with LILY pads, flowers, butterflies, etc. And the lining is purple with dragonflies.

Now one of the very best things about buying a tote bag from K. is that all profits go to benefit orphans and adoption. She sells the bags for a little business she has called "Crafting Adoptions." Every cent of the profits she makes goes to support several orphanages, including one for HIV+ children. Crafting Adoption's goal is to help finance as many adoptions as possible. K. has a special place in her heart for orphans as she and her husband adopted a precious special needs boy several years ago. They are planning to adopt more children in the future.

K. has an Etsy shop where she sells her tote bags. (She has a lot of material for tote bags not posted.) She also also knits and sells baby hats and shoes (watch my blog for pictures of Lilly modeling some of these items soon!) and warm and cold therapy bags. And if you live in this area, she bakes and sells the most delicious pies, cakes, and brownie and muffin mixes. Yum ... I'm thinking now of her cinnamon rolls! :P

Please check out K.'s Etsy shop at:

It's so satisfying to buy useful items and help support orphans and adoptions too! :)

"Pure and undefiled religion before God and the Father is this: to visit orphans and widows in their trouble, . . . ." James 1:27

Monday, November 29, 2010

Cardiologist visit

Weight check = 6 lbs. 14.6 ozs.
Lilly saw her cardiologist this afternoon. He was very pleased with her weight gain. It's slow but steady. He said the pulmonary artery band on her heart is still a good fit. (For some reason I had envisioned Lilly needing the open heart surgery around Christmas time. But it may very well be springtime at this rate.)

The scar on Lilly's chest (where she was cut open for the band) is healing nicely.

Lilly seems to have a lot of deep congestion in her head at times. The cardiologist said it could be caused by the NG tube, which can irritate the nose and throat.

Today's last picture shows Lilly with her knuckle in her mouth. She's getting pretty good at getting that knuckle into her mouth. She still doesn't open any fingers except to stick her ring fingers straight out at times. But the last three fingers are loosening up some.

Lilly has been quite chatty the past few days. What a blessing it is to hear her little voice as she coos and talks to us.

"For the LORD knows the way of the righteous," "He shall be like a tree, Planted by the rivers of water, That brings forth its fruit in its season, Whose leaf also shall not wither; And whatever he does shall prosper." Psalm 1:6, 3

Stay back or else!!

Lilly grabbed a hold of her NG tube in this picture. She looks like she's threatening me: "You do what I say or else I'll pull this tube out!!"

She actually did pull her tube out again about midnight this past Saturday night. I was so sleepy it took me a few minutes to figure out why she was crying so much. Then in the dim light I noticed something was wrong with her face. No tube! She was so upset it was quite a traumatic thing to get the tube back in. We were both in tears by the end.

Then horror of horrors - the tube got a clog in it the next day. We tried flushing it with water several times but to no avail. So I had to pull it out and insert another new tube. Thankfully that one went it pretty easily.

Challenges. They grow our character. Right?

Friday, November 26, 2010

Something to smile about

Weight check = 6 lbs. 13 oz.
(Lilly obviously didn't overeat on Thanksgiving!)
I love this picture of Lilly smiling today. She's happy because her daddy is feeling so much better.

Thursday, November 25, 2010

Happy Thanksgiving!

Today was Lilly's first Thanksgiving! And that is what I was most thankful for today. :)

I started a new tradition for my children this year. I had each draw a turkey using their hand. I thought I'd save them each year into a notebook and that it would be fun to watch the size of their hands grow as they got older.

I helped Lilly with her drawing. I managed to get three of her fingers unclenched and down onto the paper. But her forefinger and thumb were just so tightly clenched that I traced them that way. I then decided she wouldn't mind if I colored her turkey for her. That was a fun, quick project on a very busy day.

"Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the LORD is good and his love endures forever; his faithfulness continues through all generations." Psalm 100:4-5

Wednesday, November 24, 2010

Happy Thanksgiving Eve

Weight check = 6 lbs. 12.5 oz.

In today's pictures, Lilly is wearing a sweater knitted by a co-worker of my husband and her mother. Lilly gets to wear so many things that talented people make. I feel like I need to make her something too! But there's just that pesky lack of time thing right now.

Lilly was so happy her daddy came home from the hospital tonight. She was fussing when he came in but stopped as soon as she heard his voice. He had the kidney stone removed this afternoon. He had a little trouble breathing on his own afterwards. (Lilly knows about that!) Then he wasn't able to urinate so they finally discharged him tonight with a catheter. (ouch!) He's supposed to call the doctor tomorrow. We'll see what happens next.

This has been a strange year for us! We're the types that are rarely sick. But 3 of the 5 of us have been in the hospital this year.

Please pray for my husband

It's the middle of the night and my husband just went back to the hospital for the kidney stone. (Thankfully my stepdad came to get him so that we didn't need to wake the children.) I have never seen anyone in so much pain and have an all new sympathy for people that have kidney stones. The heavy painkiller that he is on just suddenly stopped working and it didn't help to take another dose. He said he won't leave the hospital until the stone passes.

UPDATE: He just called to say that the hospital is getting ready to release him so he can see the urologist again this morning. They were not helpful yesterday - only told him how to prevent kidney stones. Please pray that they will do something today to break up the stone so it can pass.

UPDATE AGAIN: The urologist told him the stone would not break up on its own so he's scheduled to have a procedure to "blast it" this afternoonat 3:15. He should be able to come home after that. Praise God that he finally got good help today and that it can be taken care of before the Thanksgiving holiday.

Monday, November 22, 2010

It's like giving birth ...

We've had a busy last two days. My husband has a kidney stone. I have never seen him in so much pain. It reminded me of a woman in labor. My mother-in-law, who has had kidney stones, said it really is about as painful as giving birth. Last night my husband couldn't take it any more so he went to the emergency room. My stepdad was our knight in shining armor and took him, so I could stay home with the children. As they were leaving, Lilly was crying and her pump beeping because it was malfunctioning. Then when they walked out the door, my son burst into tears. A few seconds later my oldest daughter was hysterical. It was quite a scene. Thankfully the doctors gave my husband some good drugs and he was able to come home, pain free, later that night. Tomorrow he goes to the urologist as the stone may be too large to pass.

I was reminded what Job said: "Shall we accept good from God, and not trouble?” Job 2:10

Lilly felt like she needed to go to the hospital with her daddy, since he had stayed with her 24/7 when she was in the hospital for 23 days. But we convinced her she needed to stay home and cheer up mama. And she did. Today's picture is from last night. While waiting for my husband to call us with an update, I played the "boo" game with Lilly and she rewarded me with many smiles. (When I say "boo!" and touch my nose to her's, it really makes her smile for some reason. Sometimes she'll make a responsive noise too.)

Speaking of hospitals, I've had a lot of people ask when Lilly will be going back to the hospital for her open heart surgery. It will most likely be when the pulmonary artery band on her heart begins to get too small. (Her cardiologist is monitoring it. She has an appointment with him next Monday.) Or, it could be when she reaches at least 10 pounds. However, as slow as she gains, this seems pretty unrealistic to me. The doctor said that when a baby is at least 10 pounds, they have a much better chance of survival. Plus some under 10 lb. babies end up needing a pacemaker.

Lilly has really been moving her arms a lot more and putting her fist into her mouth. I think that's great. Though this afternoon she managed to hook her NG tube and yank it right out. Ugh. I had a hard time last time I put a new tube in. But thank God, it wasn't bad today.

Here's a tip for treating dry skin: put coconut oil on it. I did this with some horribly dry skin Lilly had over her eyebrows. Soon after putting the coconut oil on, I was able to wipe it off along with most of the dry, scaly skin. One more application and it was all healed.

Saturday, November 20, 2010

Tubes 'n sauce

Let me first say that my toddler has never liked pasta. So tonight when I fixed venison spaghetti (thanks again B. & A.!) I simply gave my son a bowl of meat and sauce. When he noticed my plate, he pointed and said he wanted a "tube" to try. I took me a minute but then I realized he meant the spaghetti noodles! As I looked at them, I realized that a noodle does look a lot like Lilly's NG tube.

When Lilly was four days old, we had a photographer from Now I Lay Me Down To Sleep ( ) come out to the house and take photos of our family with Lilly. (This is a wonderful free service for babies that are not expected to live.) That same photographer came back today and took pictures of us again, including a bunch of Lilly wearing some little angel wings. She looked so beautiful! I can't wait to see the pictures because this photographer does amazing work. (And the prints are the most rich colors I've ever seen.) If you live in our area and need a photographer, I highly recommend him:

Thursday, November 18, 2010

Finally a little more weight gain ...

Weight check = 6 lbs. 11 oz.

Perhaps if Lilly continues gaining weight at the rate she's going, then she'll hit 7 lbs. by the end of the month.

Lilly has a new cousin - baby J. He was born Tuesday which was actually on his due date. He weighs 3.5 ozs. more than Lilly but she's a little longer. Wonder who would win in a wrestling match!

In today's first picture Lilly is wearing a knitted sweater and booties. A co-worker of my husband gave him a whole bag of knitted sweaters and booties. Apparently her grandmother had knitted them for her children but they were too small. So she had saved them until she found a small baby to donate them too. (The fit is pretty good except for arm length.)

The last picture shows my two girls snoozing. It made me laugh to see them this morning. But tonight it's just making me feel sleepy!

Tuesday, November 16, 2010

Jumpers and games

Weight check = 6 lbs. 9.5 oz. (no change)

My oldest daughter deemed today "jumper day." She wanted to wear the jumper that she had made herself and wanted Lilly to match her. She was thrilled that Lilly had been given a little jumper as a gift.

In one of the comments on my last post, a pastor mentioned a premature baby that was not supposed to live. The baby lived. The baby was supposed to be severally mentally disabled. The child is 14 years old and not mentally disabled at all. He noted: "Unfortunately, many doctors do not factor in the Lord's blessings in their diagnoses." I like that. :)

"In his [God's] hand is the life of every creature and the breath of all mankind." Job 12:10

Today Lilly's milk ran out right before we left for my older daughter's piano lesson. Since it was "NG tube changing day," I decided to just detach Lilly from the pump and pull out the old NG tube. It was so freeing to just walk out of the house without the pump and gear! And so wonderful to just sit and hold her at the lesson without worrying about being careful about the tube in her nose. I inserted a new tube when we got home and praise the Lord, it went well.

This evening my husband was holding Lilly and ended up getting a little game going with her. He kept saying the same thing over and over (I don't remember what but it ended with "boo!") and every time he said "boo!" Lilly would make a noise in response. She also smiled quite a few times too, after making her noise. It was so wonderful seeing her interacting like that!

Saturday, November 13, 2010

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!"

Wednesday, November 10, 2010

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!

Tuesday, November 9, 2010

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 -

From Scripture Memory Fellowship: we have several of the available titles - my son's favorite is "I Am" -

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

Monday, November 8, 2010

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.

Sunday, November 7, 2010

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.

Thursday, November 4, 2010

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.

Wednesday, November 3, 2010

Mummy tummy

Here's a picture of Lilly napping while she exercises with her stretch band. Don't you wish you could do that? :)

Today's post is for women that have had babies and still have a "mummy tummy." After I had my son (late summer 2009) I lost all my pregnancy weight. But I still had what looked like a beer gut. I knew my stomach muscles had stretched out, but didn't really think a lot about it. (As long as I didn't look in a mirror that is.) I wish I had worked harder at flattening them though, as it made my pregnancy with Lilly more difficult. (I carried her painfully low and she was breech.)

The weight is coming off much slower this time it seems, but circumstances have been different. One thing I am taking seriously though is getting those stomach muscles flattened back out. I've learned that I have diastasis. That means that my outermost abdominal muscles (rectus abdominis) has separated and the connecting muscle has stretched really thin. (The result is that my organs are protruding. Gross, huh?) I've been wearing a splint and doing exercises specifically designed to get those muscles back together. And it is working, though I've got a ways to go.

If you have this problem or want to learn more about diastasis then go to: I've got the book and DVD by the website's expert.

On the one hand I don't feel like I have time to exercise, but on the other - I don't have time not to! It's really a matter of health.

Tuesday, November 2, 2010

Little angels

Weight check = 6 lbs. 5 oz.

Today Lilly wore a cute dress that my multi-talented friend K. made. The dress has a matching clip but Lilly needs a little more hair for that to work. I love the bottom picture with Lilly's feet sticking out - I don't normally think much about feet but I just love Lilly's soft little feet. :)

I always appreciate everyone's comments. In particular there were two comments posted to my Sunday's entry that I was very interested to read. The first was from the mother of Brianna, a beautiful little girl that had trisomy 18 and lived 28 months.

The other comment was from Abbie, the older sister of a trisomy 18 little boy that lived for 61 days. You can read sweet Phillip Gregg's story here:

We first learned about Phillip through Samaritan Ministries, our health insurance alternative. (I described Samaritan in my Oct. 25, 2010 entry.)

Our hearts ache for both Brianna's and Phillip's families. And yet there's joy. First in knowing where the souls of these wonderful children are. Second in knowing their families will see their beloved children again one day. And thirdly, knowing that these children blessed the lives of so many on earth.

Reading about other trisomy 18 children always brings up such a mix of emotions in me. So I've really been trying to focus on this scripture, where Jesus says:

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34

I had some "excitement" last night. Lilly's NG tube decided to start leaking all over the place a little after midnight. Thankfully I was able to insert a new one after only a couple tries. Today Lilly yanked the tube partway out and put my oldest daughter into hysterics. Never a dull moment!

Monday, November 1, 2010

Say cheese!

Today is one of the happiest days of my life. Lilly smiled at me. (Happy tears!!)