I don't know why it is that I seem to post updates and they don't post despite clicking 'post' two different times on two different screens. Ugh!
Anyway, We're home! We got home on Tuesday night after a grueling drive in the truck hauling an RV. My mom is such a trooper for driving the whole way home... I would have been a tight ball of nerves.

Juliet is still using an NG tube and oxygen. We have a concentrator in our home for the oxygen and I know how to place an NG tube all on my own. It's hard to do, not because it's difficult but because Juliet hates it and I think it hurts a little. Thankfully I only have to do it once a week or if it comes out.

Joseph came home yesterday with his Gramom (Matt's mom) and she's been here helping us out- even with the 2 am feedings. Joseph is very sensitive about the situation and seems to like Juliet, but is having a hard time understanding when she cries or when I need to give her my undivided attention.

Some of her steri strips (covering her incision) have come off and the healing skin underneath is visible- it's amazing how thin the mark is, and how well it's healing. She's still got the strips at the top and bottom, but there's a big gap in between where you can see her skin where they opened her chest.

She is always gazing around with those big eyes of hers. We can't decide if they are currently dark grey or very dark brown.

I'm having a hard time being home. It was comforting to have alarms to tell you if something was wrong, but here all I can do is look for her chest rising and falling when she's asleep. Sometimes she breathes so shallowly that my heart skips a beat for a second until I get closer and see that she's breathing. Last night I was in tears because nothing I was doing was helping her calm down, and she had a full stomach, as far as I could tell all her needs were met. I was on the verge of giving her some Lortab in case it was pain when Nancy came in and offered to rock her and walk her around for a bit. I'd been awake for almost three hours after having maybe an hour or two of sleep when she offered, so I gladly accepted. I just want so badly to get us to a point where she's eating normally and breathing on her own so that it is easier on us both. I can't imagine it feels very good to be force-fed.

We had a bit of a mess-up on the night that we got home. Matt was unloading the car and missed her medications in the back seat. Keep in mind that this was bordering on 48 hours awake for him after being in a bouncy truck with a squalling baby, and knowing he had to go to work very early the next morning (about 3 hours later). She was due for Lasix and Aspirin the next morning, but I didn't have any way to give it to her since it was in the truck (which was hooked up to the RV) in Rexburg. My mom can't unhook the RV all on her own- it's not a one person job.

My mom called dad and told him the situation and he left work in the middle of a meeting to bring the medicines to me. I am so thankful that he did that, and nice of his boss to be understanding about it.

Well, I'm going to go, almost time for her next feeding.