1-18

We've had a pretty uneventful couple of days, which is a huge blessing!  Lydia is essentially on a feed and grow plan. She's having some minor digestive slow downs but the nurse last night discovered that the feeding order was for 6ccs over 3 hours then off for one hour.  Lydia has been getting 6ccs EACH hour for 3 hours then off an hour.  No wonder she hasn't been digesting all of it!  Yesterday I did have the mother's joy of cleaning up spit up though...so that was fun.  We'll see what the doctor says this morning since she seems to be able to tolerate more than 2ccs an hour, but maybe not quite 6 an hour.

Penny is doing pretty well too. She's still on the oscillator but is steadily getting weaned down.  I'm hoping she can go to the vent today or tomorrow and then to the high flow canula (the little tube under her nose rather than big tube down her throat) soon.  I'm really looking forward to hearing her little voice again.   Because she gets really angry when she wakes up with the tube down her throat, she tends to grab at it and throw "silent fits".  When she can't calm herself or be calmed down with touch, she has to get some medicine to calm her down.  Even though I'm grateful that she's getting rest and that the medicine is available, it's hard for me to see my little girl in a drug induced sleep.  I want to see her little personality again...in more ways than just in her fits.  There is a lot of personality in there, I can tell.

Finally I'd like to ask for specific prayer for our friends the Doyle family.  We met them when we got to LeBonheur and they are just the sweetest people.  Their little girl Faith was born with some medically insurmountable challenges.  I don't quite understand all of them, but one is "Brittle Bone Disease" along with blindness, and a few others.  The doctors have told the Doyles that if she goes home it will be with hospice care.  They've prepared themselves for saying goodbye to their little girl and signed DNR papers to keep from prolonging a life for her that is far from comfortable, but that has to be the absolute hardest thing I can imagine. 

Today they are having a dedication service in their room with family, friends, and some of their new hospital friends.  It should be a really sweet time, and my prayer is that the people who don't know the Lord (or who don't know the strength, power, and love of the God we serve) would not be able to miss His presence there today.  I pray that it's not a sad time for the family, but a time of celebration of Faith's life.  And finally, as the parents have expressed to us, I pray that sweet little Faith would be taken to her eternal home before they take her to her earthly home. 

What a wonderful time without broken bones, tracheotomies and painful medical tests she's going to have when she gets to heaven.  The song by Todd Agnew called "Martyr's Song" keeps running through my mind.  What a precious picture of how God can't wait to show us all the wonderful things He has for us when we get there.  To this world, little Faith may seem like some kind of cruel joke.  To put a baby and a family through so much heartache and pain doesn't seem loving.  To me, her life represents a perfect picture of how we're all broken.  We are all brittle, blind, weak people who need the help of our loving father to feed us, clean us off, protect us from harm...just like Faith can't do anything on her own, neither can we.  And when this life is over, be it weeks, months, or years, those who have allowed Him to walk with them through life, will be taken to this place of freedom and peace and ultimate healing and perfect sight.  Phew!  I'm almost jealous of little Faith.

Ok, now I have to go wake Jonathan up so we can make it to this service on time!  We hope you all have a wonderful day and we appreciate you more than you'll ever know.  We don't feel alone on this journey and it's because God has given us you!