May 27

Our boy will be a month old tomorrow (29 weeks corrected).  I did my first solo visit today, and had an extra long cuddle which was nice.  Things aren't going the greatest for Ryan - his immediate positive response to the steroid was due to the fact that they start off with a high dose.  Since then, he's gone back to being on almost maximum ventilation.  We are worried because this is one of the last options we have. They can do another round of the steroids, but if he doesn't respond - well, we're not going there right now.   We're going to spend lots of time with him this week. 
It's interesting - when we first had him, his lungs weren't what worried us the most - it was his brain. Now, his brain seems to be doing ok but it's his lungs that are just so bad.  We've decided that this is the longest month we've ever had - not just the physical aspect of recovering and driving back and forth, but the constant emotional ups and downs are taking their toll.  I can handle being Sadie's mom, but other than that - I'm feeling pretty helpless.  There are times when I really want to scream, punch, and kick things - but I can't because I haven't fully recovered. 
It just doesn't seem fair.  He looks so good, he's got a personality, likes and dislikes, and yet - we are faced with the reality that we may not be able to bring our little boy home.  It hasn't been fully decided and today, Nancy said she's not ready to give up on him and neither are we.  He's still showing a lot of fight. 
I'm going to take a break from writing every day unless there is something significant that happens.  I don't want to cause alarm when there's no need for it but just wanted to let everyone know where we're at as of today. This week will hopefully bring some positive changes or news but we'll have to wait and see. Until then, we still need all the thoughts & prayers we can get.  Oh - we also need sleep, but I'm pretty sure no one can really help us with that.
I apologize for this emotional entry, but the purpose of this blog was to be my journal of this journey - I hope there are many more positive entries to follow.