caption - title

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

Monday, August 29, 2011

What a difference a year makes!

J.G. recently told me that in getting onto Lilly's current blog post she ended up in a blog post from LAST August. She said her heart sank as she looked at Lilly's picture thinking she must have lost a lot of weight from her cold. But then she realized what the problem was and was so relieved to get to this year's August posts and see that Lilly still had all her chub.

I thought it would be interesting to post a couple "before and after" photos showing Lilly last August, and this August. For those that were not blog readers from the start - I first began posting in August 2010. On August 28 last year Lilly had dropped to 5.0 lbs. (She was 5 lbs. 4 ozs. when born July 4, 2010.) She continued dropping weight until she hit 4.8 lbs. By then we were in a hospital and she was put on a feeding tube. That saved her life. She is now 12 lbs. something.

THEN - Poor super skinny Lilly on the changing table August 2010 - she had zero fat rolls then and her bones stuck out. She actually had skin hanging in some places:
















NOW - Lilly on the changing table just a week or so ago - sporting her hard earned chubbiness:
















THEN - Lilly wearing a white dress for church and looking so fragile:





















NOW - Lilly wearing a similar white dress for church earlier this month - check out those round cheeks and arm rolls!:















God has been so generous to us with Lilly! She is still tiny for a baby of almost 14 months. But for Lilly, she looks fantastic. Thinking back on her life, she still amazes me what a fighter she is. A "little firecracker" for sure!

Some sad news this weekend. There is a family that lives less than an hour from us that had a little girl named Lakia last December. She had full Trisomy 18. They brought her home from the hospital at 2 lbs. - something. She was a little fighter too. Ate well and gained weight pretty well. A big personality. Her mamma came to see us during Lilly's hospitalization this past May and I talked regularly on the phone with her. Anyway, Lakia died Friday night. She was 8 months old. All that is known right now is that she was having a BM and her heart rate dropped. Paramedics came and tried to save her but couldn't. (They are having an autopsy done.)

It reminded me again that life is so very fragile and we really don't know what to expect from day to day, though we certainly tend to coast along not thinking about death. Not that that is wrong - I certainly don't believe God wants us to worry or live in fear. But we do need to really appreciate each day of life and thank Him for it. Every morning when I open my eyes, I look at Lilly in the co-sleeper next to me and after I've made sure she's still breathing I pray "Thank you Lord for another day with Lilly!" I don't always, but then thank Him for another day with the rest of my family members.

Before Lilly was born, when we had no idea if she would survive her birth, I designed her gravestone. Just in case. Besides her name, birth and death dates, I sketched an Easter lily flower in one corner, and wrote "2 Sam. 12:23" in another corner. I thought of this verse after I heard of Lakia's passing away. Here is part of that verse (spoken by King David after his infant son died):

"I will go to him, but he will not return to me." - 2 Samuel 12:23

Isn't that incredibly comforting? To know that when one of your loved ones has died, if you are and they were believers in Jesus Christ, then you will be together again for eternity? How hard it would be to except a loved one's death if you knew that was it forever.

OK - I didn't mean to end this post with gloom. And really it's not gloom - it's HOPE! Hope is what I live off of from day to day!

On a completely different topic - we came through the hurricane easily. It was pretty windy Friday and Saturday and we had rain off and on. But that was it.

And Lilly is pretty much over her cold. Just some thick snot still coming out at times. But she is feeling good!

2 comments:

  1. I asked H. who the little skinny girl was. "I don't know," he said. I asked him then who the chubby little girl was. "LILLY!!!" he said. I showed H. the other ones. Same answers. I hardly remember that Lilly either. :)

    ReplyDelete
  2. Love, love those cheeks and arm rolls! Your names are continually before the Throne.

    ReplyDelete