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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:
http://www.etsy.com/shop/craftingadoptions

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.