So. I’m sure some of you have been wondering if Lila had any SVT episodes, since we took her off the propranolol yesterday at noon. The answer is….NOPE! Not yet, anyway. She will still be closely monitored by Cardiology for a while longer, even after we leave the hospital, but we are VERY cautiously taking this as a positive sign. Her heartrate is still a little on the low end, but higher than before (low 100s to 120s), and we may need to give the medicine more time to leave her system before saying for sure.

Another positive result of taking Lila off the beta blocker is that she was awake a lot today. She is SO much more alert when she is awake too, Jon and I are obsessed. She did take a giant nap today, from 11-3, of course when Auntie Lyndsay was visiting, silly girl. We’ll have to work on her sleep schedule more once she’s home.

Staring intently at her goofy dad

Staring intently at her goofy dad

Lila also had another follow up echo this morning. We don’t have the final report back on it yet, but the initial report looks like nothing has changed much since her echo on Friday (I think they referred to it as “unremarkable change”), and still shows a slight depression, which we’ve known about. We will likely have another echo before she is discharged, to be sure nothing new pops up. As a result from the echo, Lila was taken off of the lasix today as well. Cardiology wanted to keep her on it initially, but are happy with the echo results, so will be seeing how she does without it. Hopefully she will be unaffected by coming off of it, and her respiratory rate will stay in the normal range (it was high before going on the lasix). We already know the lasix did its job of flushing the excess fluid from Lila’s system, so we just need to see how her heart functions without it.

We will be having another meeting with Lila’s neonatologist and the Cardiology group tomorrow afternoon. This will mainly be to go over where we are on everything at this point, as well as to discuss the final results of the echo. The main items we have left, it seems, are to continue to monitor Lila as she comes off of the propranolol and lasix, and work on her feeding. I’m hesitant to even speak of an ideal situation for us at this point, so I won’t. Let’s just say that if all goes well with all of this, we could potentially be seeing the light at the end of the tunnel. Not that we have been given ANY timeframe for a discharge date, but it’s nice to know that we are slowly crossing things off of our list.

Lila did well with feeding again today. I know I say this a lot, but we do still have a lot of work to do with it. She will get there, with our help. She is probably nursing “well” about every other feeding, and is getting about 1/2 of what she needs when she does this. There are SO many factors that could be the cause of all of the less successful feedings–from her being sleepy, or over hungry, to being distracted by the alarms, people, and constant noise in the NICU. As I mentioned last night, this is something we will be working on with her doctors. So we will just stick with it, as frustrating as it can be, for all of us (not that SHE is frustrating us, the whole situation is–how many newborns do you know that stick to a strict feeding schedule, and mandatory amount of milk, per feeding? Yet we must make her do this, in order to get her home). Ugh. Anyway.

Another new baby came into our bay today too, so we have a full house in there. Talk about chaos. This of course also happened right at Lila’s 3pm feeding, so I was surprised that she even nursed at all. Thank goodness we have the window, and can hide back there.

The last big news we have for today, is that Lila got her first bath from her dad! The nurses have been giving her baths when we aren’t there, so it was nice to be able to do this with her. They both did SO awesome. Lila didn’t even cry, we think she kind of liked it! I know you’re probably wondering why I didn’t help–and trust me, by not participating, I was helping. I kept my comments to a minimum, and let dad do his thing. I’m sure he appreciated it.

Bathtime with dad

Bathtime with dad

Snuggled up in a towel to get warm after her bath

Snuggled up in a towel to get warm after her bath

I hope after tomorrow’s meeting, we have a more defined idea of where things stand with us…and how much farther we have to come, in order to get our little girl home. Jon and I were talking tonight about how it feels like we babysit all day, or “rent” her for the day. It’s weird how she feels so much like our daughter at some times, and at others, like we’re going through the biggest exam of our lives, to see if we are qualified to take her home or not. As amazing as everyone at Children’s has been to us, and to Lila, we can’t wait until this is over. I want my daughter home.

I swear, we didn't put her hands like that. She's just that cute.

I swear, we didn't put her hands like that. She's just that cute.

Sleep well, sweet girl, we love you.

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