Day 4, 2:00 PM

Janie G had another peaceful night of rest. She'd been sleeping really well at night in recent weeks. So far...she hasn't forgotten!

She did pretty well with her first 2 bottles of the day at 7:30 and 11:30 getting close to 2 oz/feeding. She really needs 4 oz every 3 hours. At home, she was getting 16 oz/day round the clock. Please boldly petition the Lord that Janie would do that. It's only going to happen through Him. As I mentioned above, JG likes to sleep at night (don't we all!), so she has to get her nutrition during the day. 4 oz every 3 hours or 16 oz while she's awake from 7:00 AM to 10:00 PM.

We're seeing evidence of answered prayer relative to her eating...(1) she is willing to have the bottle and food in her mouth, (2) she's not spitting anything up (that's big), (3) she's not choking on her food (4) her stomach appears to be processing the intake. These are all things we wondered about given that her mouth and stomach were so out of practice...minor miracles in and of themselves, but I've never willed food into somebody like I do when Janie is working on a bottle.

We should be out of the PICU and onto the "floor" by supper time since she's doing so well. All of her drains are out, blood pressure medications are off, and she'll be down to one IV by the end of the afternoon. The IV on her right hand is out so she now has access to both hands! (see pic below) We see continued evidence of how well her body is responding to open heart surgery just 4 days ago.

I've debated saying what I'm about to say for the last 30 minutes, but I guess I should say it so that your prayers can be directed to our biggest needs...Simply, Jennifer and I are tired and beyond ready for some level of normalcy at home. We're elated at Janie's progress, but it doesn't change the burden in our souls to be at home with J, J, and J. Our hospitalization has been nothing compared to so many others that line the halls here at Brenner, but it doesn't change the longing to shoot hoops with Jacob, read a book to Jensen, or even to have to ask Jensen to be gentle with JG for the 101st time in a day. We love JG beyond measure but our love is split equally for Jacob and Jensen and we don't get to parent them right now like we want to. It's really hard. Our physical needs are met and Jacob and Jensen are well cared for, but the thought of the 5 of us sitting around the table for dinner tonight and hearing about Jacob and Jensen's days sounds better than a Disney World vacation. I don't want you to do anything for us and I don't want you to feel sorry for us. We gladly play the cards we've been dealt, but it's not always fun to play a losing hand. I guess I just want you to know that despite our mostly positive updates, our hearts ache to be "normal" again at home....and I want some Wild Draw Fours .

The doctors think that she'll be ready for home on Monday as it relates to her heart. It's her eating that is the wildcard. That's why you hear my desperation around her feeding with each update.