Well, like the title says, today was a good day! Lily got her morphine weaned down another 1ml and after three hours wasn’t showing any withdrawal symptoms. We will see how the night goes.
She took a three hour nap today, apparently making up for her minimal amount of daytime sleep yesterday!
They decided to leave her pic line in, just in case they end up needing it during the weaning process. It’s better for her to leave it in for now and not need it, than to take it out and end up needing one put back in.
I talked to someone from the plastic surgery team today about the flattening on the back of her head and they recommended we just work on repositioning (sitting up, tummy time) more often, rather than get her fitted for a helmet. I’m not going to argue with that! They said that the measurements they got put her on the line between “mild” and “moderate”, and with her age, they said getting her off her back will make enough difference that it’s basically not worth the annoyance for her and the work for us to do a shaping helmet.
In some of the pictures you can see the bruises on her legs from the lovinox shots for her blood clot :( Sounds like it’ll be a few weeks before she gets another scan to see where that’s at. And in the mean time i guess she just has to keep getting the shots? So that sucks.
She had to get the dressings on her pic line replaced today and she did NOT like that at all! But as soon as they were done, she was completely calm. I think at this point she just is sick of being “messed” with, so anytime anyone starts doing anything to her she lets them know she’s not a fan.
She was quite active and chatty today. It’s so nice to see her moving around and smiling and making noises! Also, other than brief moments back in Grand Rapids, this is my first extended interaction with her having nothing on her face! No intubation, no cpap, no replogal, no suctioning out oral secretions.. just Lil and her smiles and sticking her tongue out all the time 😆
So sweet! She just be so much more comfortable with no lines on her face. And I can only imagine how happy that makes you feel!!
ReplyDeleteWhen you say weeks for the shots, does that mean she has to stay in Boston for weeks?
What do you do while you're visiting? Especially when she's napping? Anything we can send to help pass the time?
Christine, we'll be giving her lovenox shots at home after she's discharged. Hopefully just for a couple more weeks! I've given plenty of them to adults before, but never a baby 😭
DeleteWow, but how amazing this little girl has a nurse for a Mommy who HAS had experience--would you even be allowed if you weren't? Sorry I know that will be rough on you.
DeleteI hold her, change diapers, play, do tummy time, read, watch tv, wander the hospital, that kind of stuff.
DeleteI think we could still do her shots. May be different for kids, but my Mom gave my Dad his lovenox shots.