That’s how it feels to be optimistic right now. Like we’re playing with fire, or walking a tightrope, pick your favorite cliche.

Yesterday was such a hard day for us. I know I spoke about it a little in last night’s post, but I left out most of the gory details. How we waited for over two hours for them to try to re-insert Lila’s IV, and couldn’t find a vein that would hold the IV. How we watched them stick our little girl’s HEAD for her blood draw, because the vein’s are closer to the surface on the head (and her mom held her during part of this! And didn’t pass out. I guess it’s true what they say–when it’s your child, you won’t care what you have to do, you’ll just do it). How we spoke with Cardiology, who told us that her echo yesterday showed decreased function of her heart. And how Jon and I both got so worked up we started imagining the worst possible scenario…it wasn’t pretty.

Needless to say, we showed up at the hospital very apprehensive this morning. We called last night before bed, as we always do, and found that Lila had been sleeping since we left. Her neonatologist called me on the ride in this morning, and told me again that she was doing well. She wanted to update us that one of Lila’s doses of propranolol was held (skipped) last night, due to her low heartrate. She did receive her next dose (at the new amount, half of the original), and was doing well on it. When we arrived at her bedside, Lila’s nurse, Tammy, was feeding her with a bottle–yay! She only took about 35ml via bottle (a little more than 1/2 of what she takes at each feeding), but that was still an improvement from the previous few days. We also noticed that at some point overnight, someone was able to get an IV into her hand…I didn’t ask how many tries that took, I just couldn’t. Hopefully after the new 2 day course of antibiotics (due to Lila’s inability to maintain her temp yesterday, the doctors are running tests to rule out sepsis; she is being treated with antibiotics until the results come back), she can lose the IV once and for all.

After she was done feeding, Jon and I just held her and hung out for a bit. It was great to just sit and hold her while she slept, I could do it for hours. I love the little sighs and noises she makes when she’s sleeping, I need to record it so I can play it all the time. It’s so addictive.



Then Cardiology stopped by to do a follow up echo. They wanted to take another look at her heart to compare it to yesterday’s echo. She behaved beautifully for this, and slept through the whole thing.

We were moved into a new bedspace yesterday, and this new space is MUCH quieter (and bigger). Lila is the only baby in this “bay” (each bay holds four babies when full), so we have a lot more privacy than we used to. It’s still not very private, but it is better than before. We are also now next to two giant windows that over look the entrance to the hospital, so there is a lot of natural light that comes in during the day, which is a nice switch from the cave we were in before.

After “lunch” (semi-success at nursing, she’s slowly but surely making progress), Lila had another EKG–and slept through it. I swear, this girl is the MOST tolerant baby I’ve ever seen. I know that her sleeping through these things is her way of coping, sweet girl. A little while after the EKG, Cardiology came by with the neonatologist, to talk with us about all of the drama over the past 24 hours. We’d asked to meet with them today, after everything that happened yesterday afternoon, to see if we could get some answers, and sort out any confusion we had. The meeting went surprisingly well (hence the title of this post). The whole decreased heart function issue is not something they are overly concerned about right now. While Lila’s heartrate is on the lower end of the normal range, it should not affect how she lives her life. The “strain” the EP cardiologist saw on her first EKG is something that can be seen in many newborns, simply due to being born. The ductis I mentioned before that was open, has gone from being classified as “moderate”, to “small” (yesterday), to “trivial” (today). So it appears it is closing on it’s own. And bottom line, NONE of this is life-threatening (something I was terrified to even be thinking).

So Cardiology is going to continue to monitor Lila and see how things progress over the weekend. We are fervently hoping that she has turned the corner on this little surprise as well…but are not getting ahead of ourselves.

Lila had her follow-up renal ultrasound this afternoon also, to check on the progress of the adrenal hemmorhage on her right kidney. We should hear those results tomorrow, fingers are crossed it has resolved itself.

Lila’s temp was also better today. She is, along with almost everything else, on the low end of the normal range, for her temps. She didn’t require the heat lamps to stay warm today though, we just kept her bundled, and we held her a lot, and that seemed to work. (Jon and I were wondering if she has some of Nana’s blood in her, she’s always freezing, even when it’s like 75 out.)

With Dad's giant book, he couldn't resist this photo op.

With Dad's giant book, he couldn't resist this photo op.

Overall, we had a semi-quiet day, with lots of rest for Miss Lila. Hopefully her night will go as well, and we can finally see her begin to get better, instead of seeing new problems arise. We have no idea as to when she will be discharged, but we remain hopeful that it will be one day soon. As Jon and I say to each other as we leave the hospital every night, another day down, another day closer to Lila coming home.

Who could resist this face??

Who could resist this face??

(I LOVE this little face she makes, when she makes a little “O” with her mouth. Cracks me up. And she’s not looking like Tito so much anymore either!)

Good night, beautiful girl, sleep well. We love you!