Almost Home

We got the news today we should be able to make it home by Monday (3/5/12)! Bye-Bye Nugget House. We appreciate all you've done but we're ready to get home.  We just have to get Brent to maintain 48 hours with no Brady (and of course, he just had one as I write this).

It's day 21 for Brent and he's doing awesome. His feeding tube was removed this week because he's been taking all his feeds via mouth. They took him off a set feeding schedule which is great, but has thrown me off. I finally got the 3 hour routine down and now it's gone. But it's progression so I'll take it. He passed his hearing test and urology signed off on him.  His MRI was great-everything normal for a baby with an MMC repair. His ventricles were a little large, but it's expected (his left: 17 ml; right: 14 ml). Hopefully we can do the car seat test tomorrow but we need a definite discharge date to do it.

Feeding for me has been a challenge. Actually, breast feeding/pumping. At this point, I'm supposed to produce 500-1000 ml of milk per day. The first two weeks I barely got to 300 ml so I was given a script for Domperidone and started Fenugreek. I've been on them for a week and it seems my milk has decreased to under 200 ml/day. Frustration doesn't begin to describe it. Nurses keep telling me it's because we are in the NICU and it's stressful. So let's home things pick up when I get home. So in the meantime, he gets whatever I can produce supplemented by Similac formula. But he's been gaining weight (up to 5.459lbs) so I'll keep trying.

Physical Therapy thinks he has great movement. They said his feet are turned in (not clubbed) because he's so tiny and the outside muscles aren't strong enough yet. But PT examined him yesterday and said his feet look a lot better already and think he'll be fine. We will contact Early Intervention when we get home to set up a physical therapy plan and make sure we stay proactive in his development.

So he'll be going home on a monitor since he's still on caffeine and is taking amoxicillin, Vitamin D and Zantac. He had an apnea test that showed he has reflux so Zantac should help him with that. Next step is getting him acquainted with our crazy dogs and setting up his room. The anticipation is killing us but I can see the light at the end of this long crazy tunnel.