Home, Semi-Sweet Home

Yes, we made it! We finally got discharged from the hospital and came home. Although we were only there a little over a week and he's come so far in such a short time, it felt like an eternity.

I was really, really anxious to get out of there and Stevie wasn't exactly cooperating. He was just crying really hard and seemed like he wanted to be fed every 5 minutes. So it was hard to make a clean break. But we finally walked out of CHLA at around 1pm on Tuesday. I got to carry him out in my arms (with a bottle in hand in case he cried again). It was an exciting moment.

But of course, overwhelming at the same time. As I mentioned in earlier posts, we thought we might be nervous to bring him home and take care of him without any nurses around... and I was right. We were nervous. That night, it took me awhile to fall asleep. I think I must have checked on him 10 times. He slept in our room so I didn't have to go far, but it was definitely hard to get comfortable and just let him be - although, I didn't have to let him be for long. He was awake every 1 & 1/2 - 2 hours wanting food. One of the meds he is on sort of flushes him out, so he does get hungry pretty often. Left me feeling wiped out by 6am though.

Wednesday was a challenge too. The husband had to go back to work and just the thought of me being home alone with the baby all day was really nerve-wrecking. I kept looking at him thinking "Is he turning blue? Is he breathing right? Is his heart beating at the right pace? WHAT IF I DON'T REALIZE THAT SOMETHING IS WRONG??" I was intensely doubting my abilities as a mother. And this was all before 9am. Not a great way to start the day! I just worry so much because I didn't realize anything was wrong the first time around. Would I figure it out this time? It's a hard place to be. So I cried (some more). And prayed (some more). Just hoping I would make good, rational decisions and do the best I could. I think every mother hopes for that, its just a little different when your child has special needs. I'm sure I'll be hoping for the same thing every day.

The rest of the day, Stephen wanted to be held. Nothing else would soothe him. It was sweet at first. Lovely to hold him. But by 3pm when I was still in my bathrobe and hadn't eaten all day, I started to feel pretty frustrated. He was just crying so much. Part of me just wanted to let him cry it out, but with a sick little heart like his, it's not a good idea. The heart would just be working too hard. So I caved in and gave him some pain medication, just in case he was uncomfortable. That did the trick and he slept for 3 whole hours. Ate again and slept some more. Phew! Part of me thinks he just wants that grape-flavored medicine, so he fakes it. Man, he loves that stuff.

He always makes this face when he is asleep. I hope he's having nice dreams, but its probably just gas.

So yes, as difficult as it has been and as many moments as I've struggled just in the last 2 days, being home is wonderful. I love sleeping in my own bed. I love being able to eat and watch TV on my couch. I love that the little guy is getting to know his surroundings here. I love the familiarity of it all. When so much is unknown, home is always a comfort.