Fever gone (stay away!)

Lilly's fever was gone by this morning, thank God. Please pray that it stays normal. Because if all is good today, they will take the breathing tube out of her early tomorrow. (They'll stop her feeds at midnight so that her tummy will empty first.) She's developing bacteria in the breathing tube, which is normal, but still not good and it means it needs to come out soon. They're tweaking her antibiotics to deal with it.


The doctor feels that because Lilly is so medically fragile that she only has a bit over 50% chance of handling it OK when she comes off the ventillator. He apologized that he gave such a low pecentage. However, I know that Lilly is one tough cookie - and she seems to keep an angel with her - so I probably have a lot more confidence than the doctor that it will be OK.


Lilly's chest x-ray this morning looked good. They also did an echo on her - I haven't heard back on that one yet. She was very annoyed after the echo and got to coughing so much she spit up a lot of milk, poor baby. It is strange to watch her cough because it is completely silent, due to the intubation. They gave her a little extra sedation and cleaned her up and now she is peacefully zoning out. (I'm hoping she won't have a lot of drug withdrawals from all the stuff she's on.)

I often feel so bad for Lilly and all she goes through and find myself telling her when she's upset, "It's so hard to be Lilly." I was thinking about that yesterday again in a different way. I love to read but rarely have time to lately. (Wonder why??!!) But one benefit to these long days here is that I can do a lot of reading. Yesterday I read a book called Pieces of the Pearl: Memoirs of a Foster Child's Triumphant Transformation by Teresa Ann Winton. (I used to know Teresa in the late 1990's when I lived in Virginia.) By clinging to God, Teresa overcame an incredibly horrible childhood. As I read about the intense emotional pain she so often went through I thought "It's so hard to be Teresa." Then the more I thought about it I thought about how probably most of us have had to live through some really terrible things, hurting emotionally, physically, and/or spiritually. I know I've had to deal with extremely difficult and stressful emotional times in the past - and now with Lilly. And my husband has had physical pain in childhood, emotional pain from losing a sister, and now Lilly. That made me think that as physically difficult life is for Lilly, she does not have an emotional rollercoaster to ride on. When she is feeling OK physically - she is a happy little baby. So for her there are days were it is NOT "hard to be Lilly." We each have our own mixed bag to deal with.

I thought about how the apostle Paul was tormented by a "thorn in his flesh." He begged God three times to remove it. God did not and answered "My grace is sufficient for you, for my power is made perfect in weakness." - 2 Corinthians 12:8

God doesn't promise to take away our "thorns" (and some people sure seem to have bigger ones than others!) but He will never leave us. He is the one constant we can count on in this messy life.

OK - so now you see that not only do I have a lot of time on my hands to read -but also to think! Not something I have much time for at home either. :)