That’s what one of Lila’s doctors said to me today. She is the neurologist heading up the Hypothermia Protocol Therapy (and one of our favorite doctors), and stopped by tonight as I was leaving, just to say hi and check on Lila. She told me that Lila has shown amazing courage, and that we need to do the same. She also said that crying is not only okay, it is expected (I was a little teary, typical of every night, when I have to leave Lila). Neurology is going to be signing off on Lila’s case, and will do a follow-up appointment with us 6 months after she is discharged, but we are, for the most part, done with that side of things.

The cuteness just kills me.

The cuteness just kills me.

Now we need to work on the cardiac side, and her eating. I met with Cardiology this afternoon, and they are recommending we take Lila off of the propranolol, to see if the SVT returns. The dose we have her on now (half of the original dose) is still keeping her heart rate just a touch low. In taking her off, we are looking to see if the SVT comes back, or if her heartrate will move into a more normal range. We would also see if Lila will be less sleepy once off of the beta blocker (and could possibly improve her feeding). We will eventually want to try to wean her from it anyway, and Jon and I decided we’d be more comfortable trying this in the current controlled setting, where Lila is being monitored 24/7, than trying to do so at home, in 6 months or a year. If the SVT returns, we will put her back on the beta blocker, possibly at an even lower dose. However, if we cut the current dose in half, it would be considered to have a “low theraputic effect”, so may or may not be effective. Alternately, there are other medications we can try, but carry more side effects than the beta blocker, and require more constant testing, so we are trying to avoid this if possible.

So Lila is off of the propranolol as of now–please pray that the SVT doesn’t come back. That would be the ideal outcome…and we could really use a break.

I also spoke with Lila’s neonatologist about trying other options with her feeding. She seems to be at a standstill with this, and I want to see if we can do anything to help move this along. We decided to keep an eye on her adjustment from going off the beta blocker first, and after a day or two, depending on how she does, we will work on other feeding options. We are going to try moving us to a room for her feedings, so there aren’t so many distractions, and so she doesn’t feel so stressed. I’m hoping the quiet helps. We may also work to feed her “on demand”, instead of on her current schedule of every 3 hours. This could backfire, and result in her snacking all day, but we have to try. I would also like to try to stop using the feeding tube for a period of time, and see if she will “give in” and eat once she is hungry. It’s a tricky situation, which I’m sure all of you parents can understand. I don’t want to stress her out, or have her associate feeding time with being a negative thing, but we need to get her eating orally, instead of depending on the feeding tube to provide her with a full belly. So we will be working with some of these options once we have more answers about her beta blocker. Who knows, coming off of that may make her more alert, and she may just pick up nursing on her own. Only time will tell.

Aunt Caitlin came to spend some time with us today, it was great having company this afternoon. Cait was able to listen to Lila cry for a bit, she was a little fussy when she first got there. But once she settled down, she slept most of the afternoon (Lila, not Cait). Lila loved hanging with her aunt, and heard lots of stories about her cousin Gracie, who is SO excited to meet her.

Hanging out with Aunt Cait, wide awake

Hanging out with Aunt Cait, wide awake

There is another new baby in our bay today too, so we’re almost full over there (3 of 4 beds are full now). The weekend reprieve of having the bay to ourselves has ended, and it’s much more busy and crowded now. Sigh.

Jon’s first day back in the office went as well as could be expected. It was tough for him to be away from Lila, but I sent him pictures all day, and he will be seeing her tomorrow. It will be good for all of us to start getting used to Jon working again, especially since the money machine I keep in the basement is out of ink. It will just be easier once Lila is home with us, because he can go peek in on her sleeping when he gets home from work.

So, overall, a decent day. Tomorrow Lila will be having a follow-up echo, to just check on her heart again–hopefully there won’t be any new surprises (Cardiology doesn’t think there will be). We will be hoping and praying for no SVT episodes tonight (or ever) also.

The sweetest face ever, asleep in Aunt Cait's arms

The sweetest face ever, asleep in Aunt Cait's arms

Good night, little one, sleep well. We will see you tomorrow, we love you!

Advertisements