|3/22/04 - Toby is five weeks old today! It's hard to believe that much time has already
gone by. His weight is down about 40g, probably due to the fact that there was lots of
pooping yesterday! He peed quite a bit too. So all the plumbing is in order. Good. He
will keep getting diuretics to help him get rid of the excess fluid in his lungs, but they
do consider his daily weight to be his 'actual' weight now. Yea! He's up to 19 ml feeds
now. Luckily they supplement the breast milk, otherwise we'd have a supply vs
demand issue! They will turn his vent down to 32 bpm tonight and see how he does.
He is handling the new vent setting and lower morphine dose reasonably well. He was
much more active tonight than he has been. When I got there he had his eyes wide
open and was looking all around. He was very happy, and was just smiling away.
Then I unwrapped him and he got really mad. Lots of drama. If the tube hadn't been in
the way he'd have been yelling. As soon as I got the diaper changed, Maggie wrapped
him back up and he calmed down. Then he got a big ole "I won" smile on his face.
|3/21/04 - Toby is still truckin right along. They are planning on decreasing the rate on
his vent to 34 bpm - woo hoo! Hopefully he will be able to handle that. And the
morphine will go down to 45 ug/kg/hr. He probably won't like that too much. But we
He is up to 14 ml feeds now and still digesting everything he's given, and his weight is
up to over 1700g! Seems like a lot of weight, yet he doesn't look swollen. Maybe he
still has a little bit of fluid retention. He will probably get another dose of lasix today to
help him pee it out.
|3/20/04 - Still good. Pretty soon there won't be enough to say for daily updates! Toby
is continuing to digest all the food he's given, which is up to 10 ml every three hours.
Yea! He's doing pretty well with his current ventilator settings and the new morphine
dose. There are no plans to change anything today.
He is opening his eyes and looking at us every time we visit now, and he really enjoys
being swaddled. But he still tries to inch himself out of the isolette!
|3/19/04 - Okay, this is a little late....
Toby is still pretty happy. They turned down his ventilation rate today and are
planning on decreasing his morphine again tonight. He's still pretty squirmy and that
effects his saturations but he's tolerating things. I forgot to mention yesterday that
they switched his ventilator controls from pressure control to SIMV, which means the
ventilator will allow him to take breaths on his own above the number of breaths it's
set at, which was 40 breaths per minute yesterday and was turned down to 36 today.
It's all little steps toward getting him off the ventilator and breathing on his own.
Tonight he was up to 7 ml feedings with no trouble. No pooping yet, but hopefully it
will start up in the next 24 hours.
|3/18/04 - Toby is about the same as last night. He's still swinging in terms of his
oxygen saturation, but his blood gasses are fine. They left his morphine the same for
now and will wean again tomorrow. He's also starting on an inhaled steroid, Flovent,
that will hopefully help him get off the ventilator faster.
Toby also got to start eating again today! He's doing 5 ml feedings. Yea!!!!
|3/17/04 - Today they decided it's time to start weaning Toby off the rather high doses
of morphine that he's been taking. Apparently it's a long gradual process, and Toby is
likely to be agitated as he's coming down. They will still manage his pain as needed,
but start stepping down the i.v. concentration. We saw him tonight after his first wean
and he did in fact seem a little agitated. It wasn't clear if he was squirming more just
because he's more awake or if he was in pain. His oxygen saturation was swinging
quite a bit, but his blood gasses have been good. So he's still in pretty good shape.
He also had his final cranial ultrasound today and it came back normal. Great news
|3/16/04 - It was a long but happy day. When we got there this morning, he was off nitric
oxide completely and was doing fine without it. This was great news.
And... before they had to get him prepared to go to the operating room, I got to hold him
for a whole hour! Maggie took some pictures, thanks Maggie!
Toby's surgery went well. Everyone seemed happy with his post-operative blood gas
and chest X ray. When we left him this afternoon, he was starting to wake up a little and
was pretty comfy. When we went back this evening, he was awake and looking very
unhappy. He was squirming and crying a lot. It was sad. But then we changed his
diaper and bedding (both were wet) and he got a hit of morphine and he settled down
immediately. He was resting very quietly when we finally left. He's peeing well again
and his blood pressure is up. The PDA ligation was the trick. No surprise there!
We are so happy that the PDA is now behind us, and Toby can concentrate on getting