That wasn’t exactly easy.

Today we got Greyson out of bed and Stacy held him for a couple hours.  For some reason today became one of those days where it really sinks in that life is going to be anything but normal.  It’s hard sometimes to listen to others stories of having kids (not that we don’t enjoy hearing them!), or even going to dinner and watching families, only to realize how different our experience has to be.  Please don’t take this as a downer post, cause it is not meant to be, but there are days and times where we just have to say, “this sucks”.  It seemed moving Greyson from the bed to a chair right next to the bed would be no big deal.  Well when your child is hooked up to a ventilator, what should be an extremly simple process can get quite complicated.  Again we are not trying to complain, we are extremely blessed, but there is some mourning involved in realizing some “normal” baby experiences will not be possible with the vent.

OK so now that I’ve bummed everyone out, let me tell you some fun stories.  First, from yesterday as I forgot to write about it, Greyson got in a bit of trouble yesterday.  The nurse came in and saw Greyson with his hands together in front of him (midline which is great developmentally).  She was about to really praise him when she realized that one of his hands was holding the end of his PICC line (like an IV but more permanent).  That’s when she realized he had been pulling on it.  After an X-ray it was confirmed that he had pulled part of it out.  So they can still use it to give meds, but it is no longer able to be used to draw blood from.  The good news is Greyson is off the IV pain meds, so he really doesn’t need the PICC line much longer.

Today we talked to the Dr. and he is starting to compress Greyson’s feeds, and work on getting his oxygen requirements down to room air, if possible.  So he is now on 30 percent oxygen (room air is 21 percent) and has been keeping his stats up really well.  He also has gone without food for 4 hours and will now be hooked up again receiving more food over a shorter period of time.  This is to help him get to a place where we can feed him by bolus, or putting all his food for three hours into a bag that gravity feeds into his belly.  This would take about as long to feed a normal baby, and then we can unhook him, close the button, and have one less thing to worry about till he gets hungry again.  We are also looking into getting him a swallow study next week to see if it might be possible to begin trying to feed him some by mouth.  This is something we are going to work very hard on, as the longer he is not eating from his mouth the harder it will be for him to learn.

OK so one final story for the day.  We went to outback for dinner tonight (we try to go out somewhere nicer at least once a weekend).  This satisfied my need for prime rib that has been brewing for about a month (one of the RT’s tells me almost everytime I see him that I need to go get prime rib).  Anyway while we were there we saw one of the RT’s from the NICU.  I waved and that was about it as far as communicating with her.  Anyway we got ready to leave and asked for a couple boxes (gonna be a good lunch tomorrow!) and the bill.  When the waitress came back with the boxes, she told us that the bill had been taken care of!   We were so humbled and overwhelmed by the incredible blessings people have showered on us.  Another example of this is that a couple days ago a nurse came in and said we had received something from the tube (they have a tube system like at the banks drive through that delivers stuff around the whole hospital).  It turned out to be two gift certificates for the expresso stand from “your sister in Christ”.  This one we have no idea who it was from, but it was such a source of encouragment to us.  So I guess if you are that person and are reading this, Thanks!  You made our day!  Wow this was a long post.