yesterday around 11am we were moved out of the picu and on to a general admission floor. being moved brought back such similar feelings of leaving the safety of the nicu just two short months ago. in just one week you get to know your team of caregivers and doctors so much that you feel a little frantic leaving them.
the actual act of moving otto’s crib out of his picu room and into the huge elevator to a lower floor was a little traumatizing and unexpectedly i just didn’t want to leave all of a sudden even though leaving was a step forward. it is such a catch 22 and yet another weird head game to deal with. i’m quickly learning these four walls close in on your fast and just kind of mess with you
this week and a half has felt like a life time. i think back to where we were a week ago and what we were facing and it just seems like a huge mountain that we had to climb and were still climbing. we have a long way to go and we are not there yet but it finally feels like we are getting there.
on the general floor life is a little more calm. he gets checked a little less often and the doctors visit us last on the round. it’s going to take a lot for me to not hug their ankles and beg them to stay. but again we keep moving forward.
the next big hurdle we have to overcome is once again eating. we have not yet tried to give otto a bottle by mouth. he’s been tube fed since he checked in. we’ve been starting to deal with the reflux again as we condense his feeds. i’ve been barfed on twice which is a little disheartening. this morning i was also shat on. that is when your kid $hits and it splatters all over you. i didn’t want to sit until after rounds with poopoo on me so i quick ran back to our room through two hospitals covered in poop to quick change. but hey at least the kid is pooping. before surgery he was only going once every other day and you could tell he was so uncomfortable. ps are we really talking about my kids poop on here? never thought i’d see the day. but then again i never really would have thought we would be doing any of this. but that is life right?
today we are meeting with a speech therapist that is going to help us get otto back to bottle feeding and hopefully we can mix up some of his feedings to try and solve some of these reflux issues. hopefully as ottos heart continues to make it’s way back to it’s appropriate size the reflux will get better too. i’m praying so hard that otto just takes to the bottle and soars right through his feedings.
as always we will keep you updated on otto’s progress. we are so close to going home I can feel it! we are tired and dirty (no really we look so dirty) but the end is in sight. i still can’t believe it that we are here. honestly God is so good. always.0