Come on buddy

I think my sense at rounds yesterday was correct because it seems to
be even more apparent today that they want to see some more
improvements happening. Don't get me wrong, they are very pleased that
Evan is staying stable off of the dopamine, but the bile is still
coming out of his NG tube and not the stoma and he is still holding on
to more fluids than he is putting out. The good thing is that at least
he looks peaceful and content. I hear other kids crying in here and
although I feel bad for them, in a sense I can't wait to hear my lil
man cry again. It has been over a week now since I heard his sweet
voice. All in time I guess.

The plan is to start the lasix again today since his creatnine did
finally come down to a level they are comfortable with. Until he pees
off a few pounds we won't be able to focus on getting him off of the
vent. Come on buddy, pee!!!

Ben and I had a very nice night at home last night. We had many
moments of anxiety about not being with Evan but we would call and be
reassured that he was comfortable and resting. It helped that he had a
nurse that we knew from previous nights. I am beginning to see a
pattern with the boys at home- no one is sleeping at the same time!
It's good in a sense that we get some 1x1 time with each of them while
the other rests, but bad in that we are always busy with someone. It
took Riley a while to fall asleep after the 9pm feed while Payton was
out like a light and of course the opposite happened after the 3am
feed. We fed them at midnight too, but I don't even remember if or who
anyone gave us a hard time. I guess that's a good thing...maybe.

We woke up early and got Brody ready to go to school, he was quite
excited to see his friends and for the fact that our neighbor, Brody
N, and his dad were going to drive him to school for us. The 2 Brody's
are in class together at times but B.N. is a bit older so he is now in
the class ahead of our Brody. We then geared up P and R to go to the
clinic so that Payton could get his next RSV shot (which he took like
a champ!) We then got the 2 scheduled for their Nicu OT follow-up appt
tomorrow morning, swallow study Friday, and Peds appt Monday! I can't
wait for after the 6 month mark, maybe then the appts will slow down,
I hope.

I have some more pics from the trips newborn photo session that I will
post in a bit...they are toooo cute!!

Xo, B

Sent from my iPhone