Hi all! Hope you had a nice 4th of July! Steve and I spend it at home with my in-laws as well as my mom. It's a bear traveling with Alex right now...Takes us 4 stressful hours to get everything together and by then we just want to stay home...Plus we have to be home between 6 and 7 pm in order to get Alex ready for bed, put her NG tube in, hook her up the feeding machine and convince her to fall asleep. We weaned the night feedings down to 10 hours a night by increasing the ml per hour and Alex is tolerating that change. We had our CHOP Home Care visit from an RN to check up on how Alex is doing and how we are handing everything. Alex gained 1.7 lbs as of July 4th which is very good! We are also now feeding the feeding tube on the inside of the baby's p.j.'s from her neck, down her back and all the way out by her foot. - this way she can sleep in her crib without wrapping herself up in the tube. Alex does have to sleep with a no-no on one arm and double mittens on the opposite hand which means that she can not bend one arm and has no access to her thumb. She has resolved to take a pacifier (which she refused time and time before) but wakes up throughout the night because she can not move easily and the pacifier falls out and she is unable to pick it up and put it back in her mouth. This means the parents are up throughout the night too...Alex manages somehow to take the feeding tube out herself in the morning (once the feed is done) if I don't get to her quick enough. If she takes it out herself she rips off the tape and all! Alex has refused to eat during the day over the past 3 days and needless to say I am conserned...Please pray that Alex would eat her normal means during the day while receiving night time feeds throught the NG tube. And please pray for the night time sleep situation. Also for wisdom, strength and energy. Thank you!!!