Slow and mostly steady

Just a quick update...last night was OK. Not well enough for the docs to be ready to take Alivia off her IV med completely, so today they upped her oral med and kept her IV med the same (it's at a lower dose than when we were admitted, however). We'll see how she does today. Clinically, she looks pretty good. But if you simply look at her, you'll see her breathing is a bit labored and a bit faster than we'd like. We hope the upped dose of oral meds helps with this.

I'm not going to lie - yesterday was rough. I've never felt so anxious and scared, and I let it get the best of me for the majority of the day. It's hard to stay calm through all this and to see your baby in a hospital bed for a week straight. We get to hold her now and then, but the cords she's attached to make it cumbersome and nervewracking. I just want to find a rocking chair, pick her up and hold her chest-to-chest like I know she likes.

So that's pretty much it. It's hard to believe we've been living in a hospital for a week now. They make it pretty easy to meet your basic needs here, though. We each get meal vouchers (fun fact: breastfeeding moms get three free meals per day), and there's a Ronald McDonald House room that has a kitchenette, showers, laundry, and TV room. There's a parent lounge for sleeping or eating or showering. We tend to both sleep in Alivia's room - me on a chair and Andrew on the floor on my parents' camping mat. I sleep better than Andrew, which I guess is a side benefit of being Alivia's food source. I have to eat and sleep ... the eating thing is tough, the sleeping thing isn't. Sleep is the one escape we have from this extremely challenging new reality.

Please pray that Alivia tolerates today well and is comfortable adjusting to her new medicine mix. We are encouraged that her labs indicate her heart isn't over-working without as much assistance from the IV med, but we know that this whole journey is a "marathon not a sprint" as one doctor put it...and it's also a roller coaster ride of ups and downs, as yet another one put it. Extremely cliche, but both are true.