"They" say time in the NICU will be one step forward two steps back. "They" don't tell you that the steps back will actually feel like you are hurtling off of a cliff at 100mph blindfolded.
We are back in the corner. We are back on CPAP exclusively. We almost went back on the ventilator. We are withholding feedings through the tube so we are back on IV nutrition. It has been a long hard couple of days.
Withholding the feedings even though they are through a tube and she never actually was sucking for nutrition has left her hungry and wanting to suck on positively everything in site. Give her a pacifier or your finger and she will go to town, she is very hungry! She gets so wrapped up in the sucking that she forgets that whole breathing thing and she stops, then her heart slows down to almost stopping. We have spent two days in the balance between "Don't over-stimulate her" and "Jiggle her and pinch her toe to get her breathing again". Terrifying.
She has been working so hard at breathing and digesting her feedings that she is just plain tuckered out. We are too.
However, we seem to have turned a corner. The X-ray tonight looked good. The echocardiogram this afternoon let us know that it is not congestive heart failure, yet. We are heading back towards the good side of life. It is very encouraging.
Slowly but surely...