Wednesday, August 20, 2008

constant

It feels like we've been in the NICU forever.

On Tuesday when we had the nurse I didn't appreciate, I left the hospital feeling like I'd been beat up. I'd been fighting all day to get Robbie the care he deserves. I was exhausted.

I had the nurse added to our please-do-not-assign-to-us-again list. It's actually the first time I'd done that.

When I asked our night nurse (a primary!) to have the charge nurse come see me, it was the nurse who'd witnessed my panic attack last week. Lovely. I'm sure she thinks I'm a total nutcase. I mostly don't care. I mean, I'm a little embarrassed- I hate being thought of as crazy, but this isn't the time to be too nice. If making sure Robbie gets the best care possible means people hate my guts so be it. I don't think it's as severe as all that, but if it comes to that, it just does.

The after-care coordinator came to talk to us about getting us schedule for the NICU follow up program. And gave me the info for the early intervention programs that Robbie qualifies for just based on birth weight. Since we live in Illinois but are likely moving to Missouri next year, she gave me the information for both states.

She said that in Missouri, it is a more parent-driven program. Basically, you have to push to get what you want. I assured her that wasn't a problem. Pushy I can do. I said it with a laugh.

At Robbie's 9:00 cares, his PGA (the remaining undigested food in his stomach) was sort of brown looking. The nurse thought it was likely the vitamins. I agreed.

But at midnight it was the same way. And it was a little redder. All I could do was sit down and wait for the NP to come and look.

He'd already had a rash of bradys early in the evening and called for a chest X ray. It looked great. They said it actually looked better than it had the last time he had one. His guts had looked great, too. There had been a discussion about doing ANOTHER CBC if he'd acted up any more, but he hadn't.

The NP came in, peeked at him and said "oh! his color is good!" Again- we get the he-looks-great speech. I like that speech, but I'm just so freakin' tired. She didn't find the funny looking PGA too concerning.

It seems like every time I turn around it's something else. So far, we've been so, so, so lucky that nothing has turned out badly. But this constant threat of something is exhausted.

Robbie will be 38 weeks tomorrow. I'd just like to settle into a feeder-grower routine. We're supposed to be past the super scary part.

I didn't leave the hospital until almost 3. His next cares were at 3:30, so I called when I got home. He had a few more flecks at that check.

He was already scheduled for an upper GI today for his reflux issues. I hope we'll know more then.

I was hoping to be back at the hospital for it, but they never know a time. Radiology calls when they're free so that the babies aren't waiting. When I called at 9:30 this morning, he was headed down then. So we just wait for the results.

I don't know what to wish for. You don't want anything to be wrong, but you also want to be able to fix it. For now, we just wait and see.

He did gain about an ounce last night. He's at 3 lb 14 oz. The moose work well.


--Trish

5 comments:

Mrs. Spit said...

Hang in there. I can't say I know how hard it is, I don't. I can see, from a distance, how far Robbie has come. I can see every step.

Hold on to hope. And remember, we care, we are praying, and we keep killing of the moose, geese and beaver, as needed.

Spork Fashion said...

With children, I don't think you are ever past the scary part. Ever.

Amy said...

Huge hugs for you. This does sound totally draining.

Elizabeth said...

Spork has said it well and I second the thought. You've just had a lot of scary early on.

Keep hanging on and we'll keep praying.

Milenka said...

I hope feeder/grower status is achieved soon! I can only imagine how ready you are to just bring the boy home and get on with real life at this point. *hugs*