Tonight’s post is going to be short and sweet, nothing earth-shattering happened today, and I think all three of us are just spent from the whole experience so far. We keep hoping we’re on the other side of our stay at Children’s, but we can never be sure.

Today felt super busy to us. There were a ton of people who stopped by to check on Lila, and everyone needed to examine her. As a result, the little one slept most of the day away.

Lila had another episode of SVT last night after we left the hospital, but before she was started on her propranolol. This one required medicine (adenosine) to bring her out of it, as ice and gagging weren’t working. She was still comfortable during the episode, and her respiratory rate, blood pressure, and tone were normal. She was given the propranolol later in the evening, and hasn’t had another episode as of yet. The doctors told us that it may take 2-3 doses of the propranolol before we see these episodes lessening, so we are prepared in case it should happen again. We’re hopeful that it won’t though. As a result, both the Cardiology and Electrophysiology (EP) teams assigned to Lila’s case stopped by today, to examine her, and see how she was doing. They wanted to go over her diagnosis and treatment with us, as well as order another chest x-ray, echo, and EKG.

The chest x-ray was done in the afternoon, and came back much improved from the one done on Monday. The fluid seems to be leaving Lila’s body, assisted from the lasix, which is great news. The EKG was also done in the afternoon, and nothing new was noticed. Lila does show a strain on her heart in the upper right quandrant, but this was already known to the EP team, from the echo. While they will monitor this, it is likely due to the excess fluid she had in her body, and should heal itself as her heart returns to its “normal” size. We will be meeting with them tomorrow to discuss any other findings from the EKG. The echo will be done tomorrow, and hopefully, that will go well also.

Neurology also came by today, to continue their follow-up on Lila’s progress. They say she is doing well, and that for the most part, their participation in her treatment is moving to the back burner (as Cardio is the main concern now). Hopefully this will stay this way, and we can cross this off of our list.

We did try nursing again today, and she did great at her noon feeding. Lactation came for her 3pm feeding, as we’re trying to figure out how best to determine how much she is getting when she nurses. We are going to weigh her before and after her feedings, for now, to get these answers. Lila was NOT in the mood for an audience this afternoon, something I’m chalking up to being exhausted from all of her visitors throughout the day. She kept falling asleep while the lactation consultant was there, so after some time trying to keep her awake, we just decided to give her the rest via her feeding tube, and let her rest.

Lila slept pretty much the rest of the afternoon, and was still asleep when we called the NICU a little while ago. Poor little girl had a long and busy day, as did her parents. We really just can’t wait until we can finally bring her home. It’s almost too hard to think about that day finally coming, because we get too excited and optimistic about it, and then get super frustrated when we find out that we’re going to be there even longer. So for now, we just take each day as it comes, and try not to get ahead of ourselves.

Off to bed now…morning can’t come soon enough. We just count the minutes until we can be back with her again.

Being adorable

Being adorable

Good night, little girl, we love you.

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