Another quiet day, with our little one. These days are SO wonderful, and so heartbreaking, because we have to leave her there each night. It usually takes us a good 20 minutes to actually leave her side. I just stand by her crib, coat on, purse on my shoulder, and watch her. Tonight she was awake when we left, which is harder to handle than when she’s asleep–she was just staring at us, and we had to eventually turn around and walk away. It kills me, every time.

How can I walk away from this face? It's TOO cute.

How can I walk away from this face? It's TOO cute.

On a more positive note, Lila was a little vulture today. She ate a LOT, for her, and it was awesome. She woke up every couple of hours, yelling her “feed me!” cry, and shoving her fingers in her mouth. This is such a change from last week, when we had to try to wake her up, and it was hit or miss on whether she’d actually want to eat. I think taking the feeding tube out was the best thing we could have done this week. Lila has been so much more responsive about eating ever since that happened. She still has to work on the bottle feedings, but she is taking part of all of them for now.

Lila also gained a tiny bit of weight last night, YAY! It was only 20 grams, which is just over 1/2 an ounce. But it was a gain, and not a loss, so we are thrilled. Hopefully she will gain or stay the same again tonight…I’m really hoping for a gain, after all of her eating today.

Not much else happened today, it was super quiet at the hospital. We watched some of the NCAA tournament while Lila slept on us, and that’s pretty much it. Tomorrow we expect more to happen, as her attending will be back to work, as will the Neurology and Cardiology teams. We have some things to finalize with them (follow up appointments, another echo, a follow up renal ultrasound, etc), and hopefully we can get more answers on when we might get out of there. I’m hoping this weekend will be considered a success by their standards, and we can put a discharge plan into motion.

Wearing her first Red Sox hat

Wearing her first Red Sox hat

Good night, little girl, get some sleep tonight! And EAT, girly, eat. We love you.

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