One Step Forward and Two Steps Back

Well, in surgery Thursday the ENT discovered built up scar tissue in her nose and he cleared it out.  He thought that would solve the problem and she wouldn't need a tracheotomy, but things are different now.  She started struggling the morning after surgery.  Laboring again with each breath and in lots of pain.  So they intubated her (put in a breathing tube and ventilator), and she extubated herself (pulled it out) so they intubated her again. And gave her morphine.  And she extubated herself again yesterday. So the intubated yet again.  And gave her a higher dose of morphine. And she's finally comfortable.  For now.  They now want to do a trach asap.  As in tomorrow.  We knew this was always a possibility.  The trach wasn't going to be off the table for at least the next year because of her nose.  And that's why when the surgery went well, we didn't get as excited as our families.  Surgeries can go well and recoveries can go badly.  One minute you can feel like you're finally making progress and turn around and find you're right back to where you started. 

I'm trying to gear up for the fact that we will be here another month at least.  Who spends at least two months in the NICU with a full term baby??????  It just sucks.  And I'm just tired.  And I just want to wake up from this bad dream and still be pregnant with a perfectly healthy baby.  But that won't happen.  I'll keep plodding along and am just praying that someday I get to take her home.  When you see your baby hooked up to every monitor imaginable, you start to wonder if that will ever happen.  And the horror that consumes you at the thought that that might not ever happen is unbearable.  But there's no adrenalin left to cry or scream.  You just continue to feel it all with absolutely no release.

When she does come home, we won't be leaving the NICU behind or returning to our "normal" lives. The lives we thought we'd have with two kids. No, we'll be coming home with a trach, a feeding tube, a suction machine, and monitors.  We won't be going for long walks or an afternoon at the pool.  There won't be showing off my newest baby to the world, but just trying to keep people away as she continues to heal.  There won't be listening to her make baby noises as she won't be able to make any sounds with the trach.  I would gladly take the crying to get those baby noises. There won't be snuggling on the couch as I breastfeed her, just pumping at some point and hooking up a feeding pump to her feeding tube every few hours.  We'll be making lots of trips to doctors and therapists as well.   Life doesn't go back to "normal" once she comes home.  It will be a new normal and we'll gladly jump thru all the hoops necessary to get her home and healthy, but that doesn't mean we won't remember what we dreamed it would be like. There's part of us that will always grieve what we've missed out in the last five weeks.