Today was quiet. Very quiet. No doctors, no drama, no new diagnoses. Just us (and Lila’s nurse, of course), spending time together as a family. It was the closest thing to “normal” that we’ve had so far.

Last Sunday was when the whole Cardiology side of things started, when Lila had her chest x-ray to see if she had fluid in her lungs, and the tech thought her heart seemed large. It was also when the SVT started. We still can’t believe all of that was only a week ago.

Lila and I worked more on nursing today. Out of her four feedings we were there for, she did decently for two of them. The other two, she was not interested at all, so I just held her while she slept through her tube feeding. We are trying to keep encouraging Lila when she does nurse, and not stress out when she doesn’t want to. She’s been through a lot, and we can tell she still gets very overwhelmed and stressed out in some situations, and we don’t want feeding to turn into one of those stressful things for her. Still, I will probably bring up her eating with the doctors tomorrow, to see what other options we have for getting her up to par with her feeding. This continues to be a main topic we need to conquer before she can come home with us, and we want to make sure this happens as soon as possible.

Lila also got her IV out again today. We are hoping and praying that she won’t need another one. The sepsis results continue to come back negative, so she was taken off of the antibiotics last night. As long as she doesn’t have any more SVT episodes, she shouldn’t need the IV. We are hopeful the propranolol will continue to work, and we won’t see them again.

Jon and I spent as much of the day as possible holding Lila, and talking to her. She’s becoming more and more awake and alert, which is awesome–and she’s also becoming more of a fusspot. Which is FINE with me, I love hearing her cry. When she was born, all we heard was silence, so this is a joyful change for us. She’s a feisty little girl, and I love it. We found out when we were leaving tonight, that she was awake for most of the time from 11pm-5am last night! She was fine as long as she was being held, but would fuss if anyone tried to put her down. I think Little Miss is getting spoiled in the NICU, the nurses love her, and she’s eating up the attention.

Napping with mom, she sat like this for over an hour!

Napping with mom, she sat like this for over an hour!

Such a cute little peanut

Such a cute little peanut

Tomorrow Jon will be going back to work, which is going to be an adjustment for all of us. He’s only going a few days this week, and coming to the hospital on Tues and Thurs (and obviously, should we luck out and get to take Lila home this week, he’ll be there whenever that is). It’s going to be hard for all of us, but it is something we have to face. Someone in this family needs to make the money to pay the mortgage. His bosses and colleagues have been wonderful to us during all of this, we are lucky and thankful for that. One less thing for us to stress over.

And that’s about it for today. These days are still hard, just in a different way. They just make us want her home even more, because she seems to be improving. We’re hopeful that day will be soon.

One more day down.

Awake, again, right when we leave. The hardest part of every day.

Awake, again, right when we leave. The hardest part of every day.

Good night, sweet girl. We love you.

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