Ninety-seven days.

Ryder James Newman, hospital day number ninety-seven. 

Today Ryder smiled big at his daddy, and his nurse.  He was able to stay just on 2.5 liters of oxygen flow.  He is now on only one IV drip, his milrinone, which is down to 0.2 from 1...going down slowly every other day or so.  He worked on his head control, played with his toys and rocked in his rocker.  He also drank 16 ml out of a bottle - that is just over 3 teaspoons, not a lot unless you take into account that that's almost 3 times as much as he tried the last time

...and I missed all of it.

Going back to work is really sad sometimes.  So hard not to be a part of that little life for so long, especially when he is still in the hospital, in the ICU, for the past ninety-seven days.  But life moves on and eventually you have to go with it.  I couldn't imagine we would be here so long, but it was difficult to imagine anything beyond the first few minutes initially.  Eventually, you can see past that to hours, then after some rough patches, you can imagine you will get at least 1 more day.  Some days go by, some good, some not quite so and then it's been a week, then 2.  Then sometimes an entire week has been "stable", and a month goes by.  And two months.  Then three months.  I remember walking down the hall, first noticing the rooms with piles of stuffed animals, clothes hanging on the cribs.  Babies who had been here way longer than I ever thought Ryder would be...so long that this was their home...and babies come with a lot of stuff.  So it seemed like it would be better not to bring stuff, not to get comfortable because we weren't going to be here that long.  But as months go by, stuff comes too - toys, stuffed animals, blankies, bouncy chair, boppy pillow, clothes.  Along the way our stuff came too - chargers, jackets, Addy's toys.  And now we are one of those families, the ones that live here...that work out of the room, or hurry back here from work hoping everything will still be ok when we get back...and ok tomorrow...on day ninety-eight.

So, I brought my own pillow tonight.  Why not?  Everyone else knows we live here so may as well not pretend and bring more stuff.  I am going to sleep tonight (after Ryder stops crying from his breathing treatment) being greatful we are in fact still here, because we could have been a family who already had to bring all the stuff back home...without that little life to go with it.  Goodnight sweet baby boy, my little warrior.  Thank you for saving a smile for me tonight, and I hope to see another after work tomorrow!

Prayers for constant loving arms to always be holding you when we are out of reach.