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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

Friday, September 24, 2010

A plan ...

Weight check = a very slight drop

Lilly was given a bath by the nurse early this morning. That explains her fluffy mohawk in today's picture. Lilly had more bloodwork done. If they keep that up I don't think the bruises on the sides of her head will ever heal! They wanted to check her hemoglobin levels.

Last evening the doctors and surgeons met to discuss cases. A plan was put into place for Lilly. The biggest part of it is that she is scheduled for surgery next Thursday. They are going to do the less invasive surgery first - inserting a pulmonary artery band into her heart. They'll go in through her chest. (It's usually done through the side but they decided that the chest is better for Lilly because it will make breathing right after less painful. That is important because there is a lot of concern as to whether or not she will be able to come off the breathing machine on her own. Please keep praying that she will - I can't stand thinking that if she can't, she might have to be in a breathing machine for the rest of her life.) Recovery from the surgery is about 3 days. Then we should be able to go home to North Carolina and Lilly will be monitored by her pediatrician and cardiologist. Lord willing the band will help her heart function well enough so that she can grow bigger and stronger in preparation for the open heart surgery, which would probably be before the end of the year.

Lilly (and my husband) will remain in the hospital until the surgery. The doctors want to try and keep her as stable as possible, and continue observing her.

They also want to check Lilly's brain. They tried to do a C.T. scan on her this afternoon but she kept moving her head around too much. They said they'd try again tonight.

Something wonderful this afternoon - we got to have Lilly unhooked from everything enough that we could walk laps around the hospital floor she's on. I put her in my ring sling and we walked for about half an hour. It felt sooooo good to walk! Lilly snoozed through the first half and then had her eyes wide the second half. (A special "hi we miss you!" to our Friday walking buddies - we can't wait to be walking again with ya'll soon!)

Because of her full trisomy 18, Lilly is considered to be a "disabled citizen." We started the process today of seeing about her getting social security. I think she should qualify. The financial person surprised us today by saying that perhaps all of Lilly's medical bills could reach a million dollars. (The surgeon had told us it should be well under the $250K we are entitled to from our medical needs sharing program - Samaritan Ministries.) I cannot even fathom paying a million dollar bill.

I am completely exhausted tonight but wanted to share this from Ecclesiastes 7:14: "When times are good, be happy: but when times are bad, consider: God has made the one as well as the other. Therefore, a man cannot discover anything about his future." (The book of Ecclesiastes is great reading! King Solomon wrote much to ponder about.) I often think I'd like to know our future, but I think it's probably good I don't.


  1. that is a tough one...we will need to lay it aside and think about how blessed we are to have is not counted in 'worth' as many things are. In fact, money can not compare to life. So , we all will pay what we can and remember, You can't get blood out of a turnip...bit of humor but true
    xxxooo to all of you

  2. yay for a plan!!!! praying hard... Ecclesiastes is great reading!!!! love you all

  3. Even in the toughest of times... there are little bright spots of mercy and grace. Love to you all...and give Bubba a big hug from me.

  4. I love all the pictures Lisa, can't wait to hold Lilly again! love, prayers & hugs...