First Week Home!

It's been a week now since Hazel Grace has been home.

Christmas has come and slid silently by.  The days and nights follow a rhythm of feeding, changing, medications, tubes, leads and monitors

and again and again I wonder,

Who ever thought that I was qualified to do this?

She is actually a pretty quite baby, resting there in her cloud of pinkness

and it's often easy to forget that she's medically fragile.  The stickers on her cheeks that hold her cannula in place are, for us, easy to overlook.

They are a part of her.  We have never known her without them

never known her face clean and clear of tape and tubes.

Gabriel and Jo dote on her.  She is the epitome of sweetness and tenderness to them and they carefully wash their hands before asking to gently touch her soft head or hold her little hands.

Jo says, 'I wish I was baby Hazel' which shows how it has become second nature to all of us to just step over the tubing lacing across the living room floor and dodge the pole that holds her feeds.  How so very innocent of a 6 year old girl to want to be her tiny sister, all snuggled in a sweet blanket, because in her mind, don't all babies come with tubes sticking out of their tummies and nubbins in their noses?  What's not to love about sweet baby Hazel Grace?

Even Jesse, in all of his rambunctious almost-two-year-old self, is gentle with Hazel.  He tries to climb into her bassinet, but only when she's not in it.  He admires her pacifier, but he knows it's not his.  And surprisingly enough, he pretty much leaves her gear alone.  He seems to sense that all of her paraphernalia is seriously off-limits, even more so than the electronics that he struggles to reach every day and that we must remind him not to touch every day...more than once a day.  He has flipped her O2 condenser off a few times, but the squeal of the sensors when we reprimand him and start it up again seem to have driven home the fact that he must not touch Hazel's things.  He leaves her feed pole alone, as tempting as it is being so tall and having almost irresistible wheels on it, and he steps gingerly through the maze of tubes and lines even though sometimes  he makes a game of it crossing back and forth over the rug like it's an obstacle course.

And Hazel herself is doing well.  We went to the pediatrician on Monday, and she weighed in at 4 ounces more than she did last Friday when we brought her home.  Of course, you have to take into account differences in the scales, but either way, I figure she has gained at least 2 ounces, if not more, and she weighs in at over 8 pounds!  We will find out for sure about her weight when we go into the office again and weigh her on the same scale.

And so, we have started the next chapter of our lives, and it is being counted off in increments of 3 hours with every day being a new page that must be turned a written.  How long will this chapter continue?  This chapter of tubes and medicines and 3am feedings?

I don't know.

But I hope that my hand is as steady writing the final page of this chapter as it is in the writing of this, the first page of our next story.  And while I an thankful and blessed to have our Hazel Grace home here with us, I am looking forward to turning the page on this time of monitors and beeping, of milk hanging from a pole in the living room and machines whooshing air in and oxygen out in an attempt to let us all

just breathe.