our home away from home

Well we are back at our 2nd home for a bit. Xander has come down with RSV. For those of you that know of RSV you know how dangerous it can be but it can and is deadly to heart babies. With all of the precautions we have taken this still ended up happening, we were told by the doctors and nurses up her that he more than likely contracted it from coming to doctors offices for appointments up here at the PCMC. This morning we were moved from the 3rd floor down to the CICU/PICU on the 2nd floor. Xander has been fighting for air all day and as the hours have gone on it has gotten worse for him. We hit 90% oxygen help at 8:30 pm which at that time we all decided that it was in Xanders best interest to be incubated so that we did not ware out his heart. At this time his heart is doing great but his lungs are failing. His right lung has collapsed from the middle on up leaving just the bottom lobe open.  Unfortunately  as of right now  the ventilator is not working as well as we had hoped so now it is back to the drawing board to see what else we could do to help his lungs. Needless to say it is going to be a very long and emotional night. Also Xander is now back at birth weight 6 pounds 15 oz.  they tested my milk to see if maybe there was not enough calories and fat in it but it came back at 23 calories which is actually 3 calories over what breastmilk actually has in it, so they have now taken his hourly 27 fortified calorie  diet to 30 calories every hour. Xander definitely has the doctors and respitory therapists scratching their heads on what do right now.