Monday, February 27, 2006

This picture is from yesterday, but I couldn't upload any pics yesterday thanks to Blogger's infernal appetite and eventually a dead battery in the camera. Click for a bigger picture. Oy. I know Spring means longer days, but sheesh! They woke me up at 6:30 am to tell me they were closing his chest, to get there ASAP. So we fly out of here (out the door at 7:01) to get there, and they started surgery at ONE THIRTY SEVEN, lol. I don't think I even brushed my hair before we left, and then we waited for HOURS, but that's ok, it just meant I got to spend my 15 minutes with him at 8, 10, and 12 before he went up/down/whichever damn direction surgery is.
The worst part about that was knowing that it was postponed because Dr. Watts was in surgery with another baby, and the change in time frame might be because of complications that baby had, so we were worried for some other set of parents and their baby.

So, he was in for 2 hours, came out like a champ, with (so far) very little in the way of complications due to this procedure. His O2 levels dropped a bit for a minute because closing the breastbone changes the pressure on the lungs, so they upped his ventilator pressure a little, and the pressure change also affects the kidneys so they gave him some more lasix to keep them going - but all in all he tolerated the whole thing really well. He still looks really good, and is reactive to touch and sound and everything. He hates it when we play with his feet or wash his face, lol.

And when we went up to see him in CVRU after surgery, the baby that Dr. Watts had been working on that postponed things for us was up there, right next to Nova, and looking really good. :)

Before he went up, they told us that his lymphatic system had apparently been damaged during the surgery (which will cause something called chylothorax) and that they'd be repairing that while they were in there. The lymphatic system is mostly a mystery to me, and I'll have to study up, but it has something to do with fat intake - so no more pumping for me, he'll be on a special no-fat formula when they start feeding him again. I'm really upset and disappointed by the fact that he won't be on breastmilk anymore. I know how good it is for babies, but the fat content in it is high, and he can't have it - so now it's bad for him, and I have to go through the pain (literally) of not pumping. I'm not thrilled by it at all, but whatever I have to do for him is what I'll do. Period.

I'm trying to get over the emotional reaction, and look at all the time I won't be spending locked in the bathroom with the moo machine. The scarey part is that this special formula (Portagen) is going to be EXPENSIVE. I mean, regular formula is outrageous, I just can't wait to see the price tag on this stuff. Hope work picks up for Scott real quick!

I'm still a little lost around the hospital, as far as what's on which floor. He's on the sixth, food is on the 3rd, I pump on the seventh, you can go outside on the third, or the first floor, and all the elevators seem to be on both sides of the hall, so you never know which way to turn when you get off! Or, maybe it's just me and my direction blindness! But I'm learning, and could probably get where I needed to go if I had to. Ocassionally, I even help other lost people, and MAN are there a lot of them.


posted by Erin @ 8:02 PM   0 comments



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Name:
Donovan "Nova" LeClair
Location:

Monroe, North Carolina
Bio:
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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