NG Tube / Premature Burn Out

Jill had an NG Tube put in today. Pretty standard for kids on chemo...eventually, they just stop eating. Not sure how long it will be there....depends on if we can get her to eat food while it's in (they adjust the amount they give her with the amount she's eating on her own). Just one more tube attaching her to a pole (and it's a short one, too), making it VERY difficult for her to toddle around. This is something I can see us asking for help about.....walking her up & down the halls, playing with her on the floor...there is a lot of maneuvering & adjusting that needs to happen so she can be mobile. Probably will need someone to come every night so that Matt or I can get home to Anna.....but this one is a FUN job (ask Carla & Jessica). When Jill has energy & isn't in pain, she's a riot. Today, she was very fiesty. I would say, "You're silly." Jill: "I not silly....Anna silly". Mom: "No, you're silly, Jilly." Jill: "I not Jilly....I Azha (friend from daycare)". Mom: "You're Azha? Who am I?" Jill: "You Mommy. You Michelle." Mom: "Who's that (pointing to Matt)?" Jill: "Wha Daddy name? Oh, Matt!"

I thought I was getting sick yesterday, so Matt pulled a 48 hour shift. That was really hard on both of us. Matt freaked out a little bit there (understandably) about people coming to visit, but I think the doctors/nurses/and my pleas for him to lighten up talked him down. We are very worried (Matt especially) about Jill catching a cold or something but have been assured that we can chill out as long as sick people don't come & everyone washes hands! And even though it will be difficult, people probably should not be hugging/kissing the baby. (Good luck with that...she's irresistible!). We cannot get through this without your visits. I, especially, would go insane. So we will try & keep it to a minimum at one time & play it by ear. However, as of this minute, the strike has been called off. You can visit (and I hope you will). Regarding visits, they are not strict about hours, really. Though it's officially "over" at 9pm...if you are already in the room, they are not going to kick you out (unless we are sharing a room) & if someone gets here after 9pm & we really need a helper or a friend, just have the visitors desk downstairs call the Ped/Onc Nurses' Desk & they will let you up (call us first, though).