(from jonathan-chu.blogspot.com)
(sorry this wasn't really posted in the evening... i fell asleep before posting this!)
Our
current plan of attack, is one night at home, day with Lydia, night at LeBonheur, day with Penny, back home to sleep.
So far, we're surviving ok on this schedule but we're still praying
that either Penny gets moved back to The Pavilion or Lydia gets moved to
LeBonheur. We're praying desperately that Penny's the one that gets
moved mostly because that means that she will have downgraded on the
severity of her case. Whichever way this continues, we are still so
deeply grateful for these two hospitals and the amazing NICU's and NICU
teams that both of them have.
Update
Penny
Today,
thankfully, was uneventful in the grand scheme of things. Last night
with Penny was an uninterrupted, bells and whistle free evening, no
bradys, no apneas, the bed didn't even get thirsty! (the Giraffe beds
have a water tank for the built in humidifier and makes a loud sound
when it needs to be refilled aka "thirsty"). The work that she was
having done wasn't as pain inducing as the nights past, so that allowed
for parents and child alike to have some decent rest. The poor little
Penny, though, was quite worn out from the massive swing of amazingly
high to frightening low glucose levels, so she was much quieter than any
of her recent days. It was sad not hearing her little cries when the
nurses would come in and rearrange things or take blood. Her little
heels look like strawberries, the little needle holes from all of her
blood drawings looking like the seeds. All day today was a balancing
game for the attending doctor. The only fluids she was getting today
was a IV bag of d10 (dextrose) and the good ole momma's milk. The IV
was giving her a balanced amount of sugar to help counter the insulin
shot she had been given. Her bilirubin count was high again so she had
to go back on a Billibed as well as a "bluelight special." lamp above
her. We also got a visit from a third cardiologist, Dr. Alpert, who
concurred with the other two doctors that the road signs for a coarct
were not there. They were specifically looking for an aortic shelf in
part of the aorta (the descending part, i believe?!) which would look
like the waist of an hour glass. They are
not seeing this currently but there is still the closing of the PDA
which they are concerned about. If this does not begin to work itself
out and the PDA, being wide open, continues to have the diastolic runoff
it will get worse and they will need to do surgery to correct
it. (http://www.nlm.nih.gov/medlineplus/ency/presentations/100012_1.htm)
We just made a call in to check on her and the nurse said that she had
two relatively severe SAT drops (O2 levels) and her glucose levels were
around the 50's. Balancing act!
Lydia
We
are continuing to enjoy the time we get in Kangaroo care with Lydia.
It's been amazing to get to hold one of the girls finally and it helps
make this whole process really feel like we have two children! Lydia
just recently has started to show certain signs that her body is being
affected by her PDA still being open. (i.e. unusual bradys and O2 sat
drops) We are praying that her PDA will close on it's own and that
another dose of the medicine or surgery won't be necessary. If she
doesn't close the PDA on her own then she might have bought herself a trip to
LeBonheur because it will require the same surgery that Penny might
have to have. That would be a sad but happy day
because we do love the team at The Pavilion, but would love for
the two of them to be together. She's continuing to take her feedings
well and has been increased to 9cc's every three hours and increasing
her weight nicely. Yay for eating!
It's hard to
believe that we're quickly approaching the TWO WEEK mark!! We feel like
it's been longer than that so far and can't imagine what it's going to
feel like at the end of this process and actually bringing them home.
We hope you all have a wonderful day tomorrow(today)!
No comments:
Post a Comment