Lila was awake when I arrived today, just hanging out in her crib. She’s been so alert in the mornings when we arrive, it’s adorable.

Staring off at who knows what

Staring off at who knows what

(Forgive the shoddy pics today, it is HARD to take a picture with the iphone, while holding your subject.)

We went straight to nursing, seeing as she was up and hungry (a nice switch from Sleepypants Lila), and she did pretty good. She was able to get about 1/2 of her feeding (we weighed her before and after she ate, to get this number), so the other half went into her feeding tube.

During rounds, Lila’s doctors and nurses decided I would try to feed her “ad lib” today–meaning, whenever she woke up and was hungry. We also wouldn’t supplement her with the feeding tube either–she would have to ask for more if she wanted it. Additionally, we came up with a plan for me to stay over at the hospital tomorrow night, and be there for 24 hours, to work on this ad lib feeding. There are sleep spaces at the hospital, so I am going to stay in one of those tomorrow night, and Lila’s nurse will call me anytime she wakes up. Obviously, we will be there all day tomorrow also, so I am officially “on call” starting tomorrow morning. Let’s just hope Lila responds to this method….PLEASE work. And thankfully, Jon is taking Friday off too, so he will be staying tomorrow night. I was picturing myself as a sleep deprived zombie mom, wandering around the hospital in the middle of the night by myself…so I’m glad I won’t have to do this alone.

I also met with Lila’s neonatologist today, to kind of finalize where everything stands as of now. The meeting went as well as could be expected. She also spoke with both Neurology and Cardiology before our meeting, to get their updates. As I mentioned before, Neurology has signed off on Lila, and aside from her follow-up MRI on March 30th, and another one 6 weeks out from her discharge date, we are done with them for the time being. We couldn’t have asked for a better outcome with her hypothermia therapy (clear MRIs, no issues to speak of), and are so grateful we had this option. I will likely post much more on these topics in the months to come, when Lila is home, and we have time to devote to it.

Cardiology is also happy with the latest echo (from yesterday), and said they noticed a slight improvement in her cardiac function. It is still showing as mildly depressed (the bottom two chambers of her heart are not pumping as vigorously as they should be), but this will take time to get back up to par. We will have many follow-up echos over the months to keep an eye on this, but it is not impeding Lila’s progress at all. Lila has been off of the propranolol for over 48 hours (it was 48 hrs at noon today), and she has had no SVT episodes as of yet. She also showed no effects to going off of the lasix (yesterday morning at 1am). The team considers her non-reactions to going off of both of these medications a success (for now, anyway), and we will too.

So that leaves us with her feeding. That is, again, the main thing we are working on, and need to resolve, before Lila can come home. I mentioned earlier our plan to try the ad lib feeding, so we will see how that goes over the next few days. What I didn’t mention yet, was that today was NOT a success. Lila did well at her 9am feeding, and woke herself up hungry at 12:45pm, so she fed then also. However, she did not wake herself up for her next feeding (anywhere from 2-4 hours from her last), so we had to try to rouse her. She was SO sleepy this afternoon, and would NOT wake up completely. So we had to resort to giving her a 4 hour volume of milk at 5:15pm, via her tube. I was frustrated, to say the least. But I have to be patient–in the grand scheme of all that has happened, if feeding is Lila’s biggest obstacle, then so be it. She WILL eat eventually, she has to. And we will work together to make that happen, somehow.

This may mean going back to MetroWest, also. We aren’t opposed to this, necessarily (hello, 15 minute commute, compared to often-times 90 minutes), but would prefer to just bring Lila straight home from Children’s, if possible. Going back to MWMC would mean another ambulance ride for Lila, being readmitted, a new team of doctors, nurses, protocols, guidelines, tests, and environment. We would much rather ride this out at one hospital, and spare her all of that, seeing as I already feel like she is overwhelmed, overstimulated, and stressed out. We will obviously do what her doctors recommend, but I did speak up and voice our preference in the meeting today. So we will see what happens with this.

That’s really about all that happened today, it was a pretty quiet day in the NICU. Lila’s nurse and I spent most of it just watching her sleep, especially in the afternoon. Two of the babies in “our” bay left between last night and today, so there are just two left (Lila, and another preemie), so it was nice to have it relatively quiet.

Please send good thoughts to us tomorrow, as we attempt this 24 hour ad lib feeding routine. Little girl needs to show us what she’s made of, so we can get her home.



Good night, sweet girl. Get your game face on, because tomorrow is going to be Your Day. We love you!