So Friday has come and gone. It's hard to believe that we've been doing this for 21 days now. Gaines has had another stable day. I'm so thankful for that but deep down in my heart, I'm ready for more progress. I so badly want him to be able to bring his oxygen requirement down. He's got to get to 21% (room air) before they can try and wean him from the CPAP. Please keep that specifically in your prayers.
I've learned a lot of life lessons through out this journey but I think the one God is trying to teach me now is patience. It is just so hard not to want this for Gaines. The sooner he gets off CPAP the sooner we get to go home. I spoke with one of his doctors about the oxygen today. He didn't seem terribly concerned. Obviously they'd rather him be off the oxygen as its not good for him, but as long as he is off by 36 weeks they are ok with it. If he's still on at 36 weeks he'll be diagnosed with Chronic Lung Disease. It's something that wouldn't affect his day to day life but he'd get tired easier with things that required a lot of energy. So, for this reason and just because I don't want to still be here in 4 weeks, I pray that his oxygen starts to come down. He's been between 28-30% most of the day today. I pray that tomorrow he hangs out from 26-28% (or less!). See what I mean about the patience?
This has been a really good week having Reed around. We have truly, truly loved having him here. It has actually worked out pretty well. I was originally worried that we'd spend less time with Gaines but I think that we are actually spending more with him. We have to take turns but there are times when just one of us goes to the hospital and we get a good long visit with him. We've held him a couple of times this week too.
People seem to wonder what we do every day. Each day we both visit Gaines three times. We wake up, get dressed and head to the hospital first thing. We generally eat lunch at "home" and let Reed take a nap. We go back for an afternoon visit and then do some sort of fun activity with Reed. We've found a couple of parks nearby and I even ventured out to the zoo this week. That's the farthest I've been from the hospital in 8 weeks. After dinner we visit Gaines again. As soon as we get home Reed heads to bed. Right now he's sleeping on an air mattress (thanks Brian and Rebecca!) and he's doing great on it. We are able to tell him that it's time for bed and he just gets in and stays. This is big because he's been in a crib until now. Hopefully it will make the adjustment to the big boy bed easier.
I think that's about it for now. One of my good friends is coming to visit tomorrow and I can't wait. I don't know what we'll do but I think it will feel so normal to have her around.
Please continue to pray for Gaines. I mentioned his lungs earlier but also please pray for his brain bleed to clear up, a healthy heart, weight gain and for him to just keep getting stronger. Oh...and a little patience for me might be nice.
Love to all,