March 7, 2001

So, throughout Evan's entire NICU stay, all we wanted was for him to be discharged so we could start out our life together as a family.  So, when I entered the NICU on Wednesday March 7th, 2001, I thought we'd have a couple more weeks there based on what we were told by the medical team 1-2 days prior to that.  When I left the NICU that night, I left with the news that our baby would be coming home less than 48 hours later.  Was I happy?  No.  I was leaving the pumping room and was met by two staff members.  Keep in mind this was about 4:30 p.m. They greeted me with the words that Evan was going home on Friday! I guess I was supposed to be excited but trust me, I was not.  We had just had our trach training the night before, we had NO medical equipment nor training on it and mentally, I just wasn't ready.  I was just starting to wrap my brain around the trach which had just been placed 10 days prior. We had been told we could stay overnight prior to his discharge and we weren't even going to have time to that.  The nursery wasn't totally ready for this baby who needed equipment that would turn his room into a hospital room.  I remember going out to the lobby and calling Mike, crying hysterically over this news. I was supposed to feel excited and ready for his homecoming, not sick to my stomach and unprepared. So, on Thursday, we waited for the durable medical equipment company to come bring us all of our supplies and equipment and receive what I felt like was the Cliff Notes version of how to use the feeding pump, air compressor, suction machine, oxygen and apnea monitor.  Thank God Mike was a little more calm than I was because when that guy left our house, I had no idea of what I was suppose to do with everything and more importantly, where were all the supplies even suppose to go??  Friday morning was spent at the phone store buying a cellphone for use in the car when he was with us, learning how to administer all his meds and getting instructions on his feeds.  Did we have any training on the g-tube and how to change it?  Uh, no, we did not.  We were sent home with the kit and that was it.  By 12:30 he was in the car, going home with us-his scared, somewhat sad and unprepared parents. What kind of homecoming was that??