The long haul

It's not looking like they'll release us anytime soon. I've accepted this fact by asking my mom to bring me actual bath towels and more yoga pants. I set a personal record: I wore the same pair for 4 days in a row. Yup.

Emily has slowed down markedly. In the last 24 hours, she has taken 6 feeds solely through the feeding tube because she's too tired to take a bottle or nurse. She lost weight because the amount of calories she was burning while feeding was more than her intake. The doctors say these babies usually start off stronger because their lungs haven't been weighed down too much yet from the extra blood circulating there. But, now we're starting to see the effects of her heart defect through her laboring to feed and her overall lethargy. They also detected a heart murmur yesterday and ordered an echo for tomorrow. It's another sign that her heart is working too hard. It seems likely this weekend she will start taking a diuretic, which will thin the blood and make everything easier on her.

I'm finding a balance between listening to the doctors and advocating for my kid. On Tuesday, I just flat out advocated. I knew she was tired. I pushed to get OT in to start teaching her how to take bottles. I'm glad I did because she feeds much more efficiently from a bottle than nursing. I'm also pretty sure I offended one of the doctors, but it's funny how manners don't matter when you know what's best for your child. As in, don't mess with me. Give my girl a bottle. Stat. I was right, by the way... (smug, much?).

I see other parents shuffling through the NICU periodically. Yesterday, I talked to a dad whose girl was born at 22 weeks. Yeah. I know. He was nothing short of thankful for the care she's received.

Funny how quickly you're humbled when you talk to someone whose road has been much longer and harder than your own. You try to look at your stack of bath towels from home with appreciation instead of annoyance. You also try to remember to change your pants every day. Because really. Let's keep it together...