Today was better. Still exhausting for all of us, but better.

We went to the hospital earlier than normal today, hoping to catch Lila more awake than she has been the past two days. And we figured that since today was Saturday, we wouldn’t run into any traffic. So we got there around 8:30am, just as Lila was starting to wake up. We were able to try nursing again, and she did much better than the day before. We still have a LONG road ahead with this, as she’s not nearly where she should be, but progress was made, and we were encouraged.

I should stop for a minute to explain why I keep talking about nursing. It’s because this is Lila’s main ticket out of Children’s. Once she is able to get this down–meaning, get hungry, show us she’s hungry, nurse for a full session, and do this at regular intervals, resulting in weight gain–she will be able to come home. And right now, nursing, and feeding in general, is not going so well. We’ve been told that she WILL get it, and that one day, it will just click, but in the meantime, it is frustrating for all of us. Lila is trying her hardest, and mostly either gets angry (because she’s hungry and can’t figure out how to get full), or falls asleep. We are still using her feeding tube more than we’d like (for every feeding, for at least part of the feeding, if not the entire thing), and while she is grasping the general concept of nursing, she isn’t really taking to it as much as we’d like. So we have some work to do.

Now, back to our day. After her morning “breakfast”, during which Lila was more awake and alert than she has been this whole week, she took a nap with mom. This was just wonderful. I could stare at her all day long, and watch her, doing nothing.

In the afternoon, Lila’s grandparents came by for a visit, which was great! Jon’s dad and stepmom came by mid-afternoon, and Lila got to meet them. They brought some very cute outfits that she will be sporting in the near future, along with Lila’s first personalized item–a super soft green blanket with her name on it. I have a feeling she’s going to be carrying it with her everywhere someday. It was great to be able to have more of our family meet the little one.

After the grandparents left, Jon and I both just sat more with Lila, and I tried feeding one more time–she totally wasn’t having it. We worked with the nurses in our bay, and tried a few things, but Lila just wanted to sleep. So we decided to let the sleepy girl have a break, and Jon fed her via the darn tube again. We will try again tomorrow, Lila will get it eventually.

Overall, we had a quiet day with our little girl–no tests, no exams, no poking, prodding, or sticking. It was much needed. We still left drained and in tears, as usual, but we know that each night away is one closer to her real homecoming.

Lastly, what I know you’re all waiting for, a couple of shots of little Lila, doing what she does best: being the cutest baby on the planet (hey, I’m the mom, I’m allowed to be biased).


“Dad, stand back with that camera thing, you’re making me all cross-eyed!”


In one of her many outfits from her Aunt Kim. And check it out–not the Duck! This is her Giraffe, we alternate between the two, and bring one home with us each night. We leave the other with her, hoping it smells like us and home. I could be imagining things, but her breathing slows when either is next to her.

And yes, I’m quoting a Jack Johnson song title in this post title…but it’s true. The three of us are better when we’re together. I love every single second I get to spend with Jon and Lila, and where we do it doesn’t matter to me right now. If Lila has to be at Children’s, then we’ll be there with her. Every day, until she is home with us.

Love you, little girl.