The Small Things in Life

Will I EVER stop being afraid to be excited at the end of the day?  Will I ever stop waiting for the other shoe to drop?  Will I ever be able to go to bed without thinking that the phone will ring in the middle of the night to tell me we are back in

THE PIT OF DESPAIR???

I hate that it has to be that way now, but so it goes in the NICU.

Today was a fantastic day.  The P-nut is OFF HIS DOPAMINE and his blood pressure is maintaining quite nicely.  He is off of the preventative dialysis from the circuit change.  He's off his paralytic, and there is no sign of bleeding.  Instead, there is movement, and breathing efforts, and the sweetest attempts at opening his eyes!  His eyelids are still a bit too puffy to get them all the way open, but he is trying so hard. They started him on Lasix, which is a diuretic, to get some fluid off.  He's peeing up a storm, so it will hopefully work soon.  I can't wait to see his little eyeballs!

We had THE SWEETEST NURSE today.  I am so used to sitting in my chair trying very hard not to knock into anything.  Every so often, I will go to Parker's bed, rub his arms and legs and head, talk to him, and then go back to my chair.  The ECMO machine takes up a huge amount of space, and the whole setup is so very delicate, I am terrified of stepping on something.  I am terrified of knocking his cannulae (the big tubes going into his neck) out of whack.  I am scared of my baby.

Sarah, today's nurse, asked if I wanted to wipe his eyes and mouth.  I think I probably looked completely taken aback, and the first thing out of my mouth was "Can I do that???"  You'd think she had asked if I would like to fly to the moon.  She told me that OF COURSE I could wipe his eyes and mouth and that it's something he very much enjoys.  I saddled up and grabbed hold of that little wipe and went to town.  

(By "went to town," I mean "placed approximately 4 featherlight touches on his eyes and 1 sort-of swipe of his mouth, all the while holding my breath and being petrified of ringing sirens and NICU police descending upon me)  She told me that he particularly likes to have his lips moistened, and that he's trying to lick the wipe.  Sure enough, he did!  As I wiped his eyes, he tried so very hard to open them to see me.

  

I was completely beside myself.  Fell all to pieces but tried to maintain some dignity and also tried not to blow snot rockets on the child.  Amazing how something so very small, so insignificant when I did it to Jeremiah, could turn my whole world around.  Today was the first day, **do I dare say this out loud???** that I felt like he might make it after all.

When Mike joined me (he and Jeremiah had been to the park for the afternoon), he got a turn and also got to do some baby stretches to work some fluid through.  I put on some eye cream for him.

 (um, sorry for the sideways)

All in all, it was a tremendous day.  We left today feeling like parents, for the first time in a week. We were walking on air, especially considering how far we've come in 2 days.  It's is *almost* laughable what a difference a matter of hours makes to us now.  That being said, it plays right back into my fears I mentioned at the top-- we could go from blissful peace to Tuesday all over again at the drop of a hat.

It's not worth living in fear.  I am choosing instead to go to bed happy with the day we had today, and riding high on the fact that I got to help take care of my baby boy!

Pastor Ron came by again today-- he heard about how wretchedly bad things had gone since his last visit, and he wanted to check on us. I was most pleased to report to him that we were in a far better place.  He prayed for Parker again, and in doing so asked God to surround baby Parker and help him feel how loved he is.  We can't hold him and snuggle him, but I know without a doubt there are hands holding him in our place.  Mike and I are not the only ones taking tremendous pride in Parker's steps forward. It is the greatest comfort to know that we can say to Parker:

"The Lord your God is with you,
    he is mighty to save.
He will take great delight in you,
    he will quiet you with his love,
    he will rejoice over you with singing.”

-Zephaniah 3:17