Two steps back...

I remember thinking the NICU was torture.  88 days, 87 nights.

The doctors coming by each morning to "judge" the progress of my baby.  Deciding which support to keep, take away, what new meds to try, decide if he's gaining weight adequately  (Oh, the pressure to gain weight!).  Watching Noah in an isolette and asking permission to touch him or hold him.  Watching him hooked up to monitors, IVs coming off his feet and hands, tubes in his nose and mouth, and surgery after surgery.  Always checking with someone else before I changed his diaper.  Always on someone else's schedule with baths.  As a matter of fact we were always on someone else's schedule for everything!  

I couldn't wait to get him home and not have an audience.  I was going to pick him up whenever I wanted, play with him, cuddle him, and feed him on OUR SCHEDULE.  

We are home and for that I am eternally grateful.  

Looking back I never thought the NICU would be the easy part.

I just thought it'd get easier when we got home.  It's not really.  I can't grab Noah anytime and play with him or cuddle him.  When you pick him up you either cause a seizure or cause him to spit-up.  (Noah doesn't just spit-up like regular kids.  Noah SPITS-UP!)

Noah eats about 3 1/2 oz per feed.  Noah spits up about 3 oz every time I feed him.  When this happens I have to rush and go get more formula and try again.  If I manage to get the feed in him I have to be very careful not to move him for at least 15 minutes after he finishes.  Then, ever so carefully, I put him down.  See, he needs to lay very still for about an hour after that.  Noah also eats every 2 1/2 hours, which doesn't leave very much room for much else.  

So you pick him up and he doesn't lose his meal.  Now you have to worry about the seizure you just caused.  Often when I move him or try to play with him it'll cause a seizure.  Watching my kid have a seizure anywhere from 2 minutes to 1 hour IS torture.  Absolute torture for both of us.  It makes him cry, jerk uncontrollably, and then when you think it's finally finished, he spits-up.  WTF!  

I know I'm being a drama queen.  Home is a MILLION times better than the NICU.  I just had a different picture in my head of how our life would be once we left.  It was a cute little life with a sweet baby being cared for by his very grateful mother and watched over by his sweet little black dog.  His dad would go to a job he loved and come home to a house full of love and smiles. PT and OT would come over to help him catch up and thrive.  He would eat great and get so big.  It was a life without the constant struggle....  

The life we have is just not the way I pictured it and I have to let it go.  It's just not that easy to let go.....

It was such a nice picture.