Yesterday, we started the day turning down his oxygen flow to .5 liters. Once again he responded like a champ. They left an order that he could continue to be turned down .1 liters at a time to see how he tolerated it. As with everything else in his life, he rocked it out with each change! Before the 6 p.m. feeding we took the nasal cannula out. It was a bit scary for me, but didn't seem to faze Dylan in the slightest! So, even though for the past week, I'd been told that there was little chance he'd go home without oxygen, he'd proven everybody wrong by doing great without any oxygen/flow support at all.
He also did a GREAT job eating. That's one of the main things they were worried about after getting off the oxygen. They were worried he would get too tired while eating and wouldn't want to eat enough. But he did a great job, and we didn't have to supplement at any of the 5 feedings in a row that we did.
This morning we decided to make Dylan a completely free man and take out his feeding tube. He was very excited about that, he'd actually yanked out the feeding tube twice already. So, that's right, as of approximately noon, Dylan is a free man! We can see his whole gorgeous face and he's doing great.
I'm going to stay overnight at the hospital tonight in one of the rooms in the NICU. That way I'll get to feed him at every feeding. He'll still be in his room with nurses watching him, but I'll get up every three hours to feed him (thanks to Andrea for staying with me for moral support). If he gains weight (the main sign he's eating off of me effectively enough) and I'm comfortable with how the night goes, they'll take him off all the monitors and I'll stay Thursday night (my mom is the lucky winner this time!) with him in the same room with me. Although, we'll still be in the NICU so obviously nurses and doctors are close, we're on our own. We'll do all the diaper changes, rocking, cuddling etc. And we won't have any monitors to randomly stare at. If I'm not super comfortable after tonight, or he doesn't gain weight I'll stay one more night with him still in the nursery but feeding him around the clock and stay with him in the same room with me Friday night.
So, in case it's not overly clear what that all means...Dylan is coming home on Friday or Saturday!! I can't believe it. He's done amazing through this whole ordeal (and I'm not the only one who thinks so, all of his doctors and nurses agree). I'm so excited to get him home, but definitely a little freaked out. I kind of want to tell everybody that I really have no idea what I'm doing, I've kind of just been faking it so far...but like everything else, I'm sure we'll figure it all out together. And I know I'll have tons of support from friends and family, so we'll do great.
I'm also sad to be leaving all of the amazing people at the hospital. Everybody has been so amazingly supportive and I've made some new friendships that I think I'll keep forever. The people here have definitely become an extended family/support system for me. More on the amazing people at Children's in another post coming soon...
I'll make sure to post when the little man gets to come home! Like I said, I'll try to update with any major changes/announcements, so feel free to check back often (and for those of you who followed Nicole's Australia blog, I promise to keep it going longer!).
In the meantime, continue to send some prayers our way that everything continues to go perfectly and we get to go home. Then I guess that's when the real adventure begins...
Bobbie and DZLee :)