Restless nights and peaceful days

It seems that Lily has a tendency to sleep and rest really well during the day and then get very agitated at night.  We could have told them that she was a bit of a trickster, but we thought it would be more fun for them to figure it out by themselves.  So, for the second night in a row, they needed to give her some extra sedation to keep her calm and rested.  The real issue with her being agitated (beyond the fact that watching her like that is the most heartbreaking thing I have ever seen, especially with her breathing tube in and so she can’t actually cry) is that each time it happens, her stats drop significantly and she’s obviously not healing when she’s just trying to stay stable.  Her fluid output was not as high as the doctor’s had hoped, her chest/abdomen is still quite swollen and her chest x-ray still showed a lot of fluid around her heart and so they decided that they would not try and close her chest today and would reassess again tomorrow morning.  It’s certainly a frustrating process because it feels as though everything is just at a standstill.  While I know that there is so much healing going on beneath the skin surface, what we are seeing is our little lady just being sedated and hoping to see some spark of our Lily.

The nurses have been amazing – all of this weekend, they have been just a kind kind group of women, all working together to keep the 4 babies in that room healthy and strong.  They each know all of the kids and check in on each of them all of the time.  And they take care of the parents so well too – they’re constantly explaining everything that they’re doing, making sure that we don’t stand at the back of the room while the doctor’s are doing their rounds but keeping us front and centre so that we can jump in and ask questions.  They encouraged us to bring Lily’s own things – her own blanket, her stuffed monkey – which I really think is more for parents, to see those comforting items, then it is for these tiny babies who are so sedated that they don’t know what’s really going on.  They’re just an amazing group of women and I already feel so lucky that we’ve been part of this.  There is a reason that Sick Kids is the one of the most amazing hospitals in the world and the nurses are that reason.