right now there are small white flakes falling outside the window. they sparkle against the sunshine, and make it feel like the world is a beautiful place. but the constant beeping brings me back to reality. the balance of finding the good things in each day to mingle with the reality of my three month old sedated and hooked to twenty different wires.
overall we seem to be headed in the right direction. the worst is passed. the lung x-rays are showing improvement. she is finally flushing out all of the extra water she was retaining, and having bowel movements again. she is tolerating feeds, and even being able to have them increased and her tpn (nutrition given through your veins) decreased.
but that vent. that damn vent. everyday they say, 'let's try to wean. be as aggressive as she will handle.' and the next day her settings are back to where they were the day before if not a little higher. i cried when the little boy next door, who had been here, and intubated, for just under 48 hours, was extuabted. i can hear him crying next door, and my heart aches a jealous ache. i want my baby to make that sort of turn around.
jason and abigail came to spend the weekend with us. we have a room at the ronald mcdonald house until we are discharged. it was nice to get to be together. we even took abigial to the children's museum for a few hours so that she was able to do something enjoyable. they were only here for the weekend though, and when they left i cried. and abigail cried. and jason just told her it was okay to cry. he didn't try to quiet her. he didn't apologize to people staring. he told her that crying was acceptable because this is hard, and we all miss each other, and we are all sad. i am thankful for a husband who doesn't want abigail, or me to pretend away our feelings, nor does he hide his own.
so we are here. indefinitely for now. trying to make certain to find things to laugh and smile about. trying not to become jaded when people complain about things that feel very trivial for us right now. and doing our best to walk this out with the help of friends, and stranger, who have stepped up in every area we could imagine to love on us.