Sleeping beauty continues to recover

Lilly had a good night and is actually still asleep now. (It is 10:45 a.m.) The doctor asked me if that was good or bad. I said "good" because Lilly was awake almost the whole day yesterday and sometimes she does that and then will make up for all those lost naps the next day.


Lilly is back up to her normal feeds (breastmilk) rate. She had a chest x-ray this morning and it didn't really show much. They keep telling me how well she's doing. (She is full of surprises.) She's been started on a drug that is supposed to help her blood pressure and make her stronger and ready to come off the ventilator. They are going to play it cautious though, and as long as she continues to do well, wait until Thursday to extubate her. (Pull the breathing tube out of her.) One part of me wants them to hurry and do it now, since they initially said they would today or tomorrow. But I have found I am learning A LOT of patience being in here and learning not to put my hopes on anything much. Everything takes longer than they initially say. And after what happened Sunday I'm not anxious to push Lilly in any way.


I read an article this morning that said that 84 - 91% of babies that are diagnosed with Down syndrome prenatally are aborted. First I was surprised that number was so high. Secondly I thought about a family at church that were told their oldest child was going to have Down syndrome was perfectally healthy when born. And third I wondered why. I guess it shows the state of a selfish society.


Finally I thought of a recent conversation with a neighbor. He was talking about a family that has two teenage sons with Downs and how bad he felt for the family because of the burden those two boys were. I'm not sure if he realized the "burden" Lilly is - since she is still a small baby. Notice I said "burden" in quotes. This is a topic I probably never really thought much at all about before because I come from a healthy family and was never really around special needs kids. But now I have a very needy child. Lilly will most likely never be able to do much of anything for herself. And yet would my family and I call her a "burden"? Absolutely not. We have found incredible joy in doing everything we can for Lilly. Even my two-year-old loves to just sit and hold her and sing to her. Yes sometimes I get a little frustrated with all her medical equipment but that has nothing to do with Lilly and is more that I'm sad for her having to have all this stuff that places some physical limitations on her/us. "Normal" babies have swings and exer-saucers and playmats around the house. Lilly has a pole with a milk bag and feeding pump and an oxygen condensor sitting around.

As I've continued off and on to think of my neighbor's comments I've thought about how as exciting as it is when my other kids do something new, that when Lilly does something new (like when she first started smiling) we were all just thrilled beyond measure. And in seeing Lilly and what she goes through, has taught us all to have deeper compassion for others. I really don't have the time to list the many many things that we have all learned from Lilly but needless to say that we are so grateful for having her in our lives. Special needs children are certainly not burdens!

By the way, an interested statistic I learned yesterday from Ann Barnes was that of the 10% of Trisomy 18 children that make it to their first birthday, 60% of those will make it to 5 years. Come on Lilly! You have a little less than 2 months to go! And if we can get her heart fixed, I think she'll make it.

Lilly's life glorifies God and I pray He will continue to allow her to do so.

"Clap your hands, all you nations; shout to God with cries of joy. How awesome is the LORD Most High, the great King over all the earth!" - Psalm 47:1-2 (Ha! We go to a church that sings a lot of psalms including this one and I was not able to write that scripture without singing it in my head. Some of you are probably singing it now too ...)