Saturday, July 5, 2008


I've never been happier to be wrong in my life.

When I walked into the NICU today, imagine my elated surprise to see the baby that I thought had passed yesterday back in his spot.

Yes, he's alive. He's very, very sick. From what I can gather from my furious evesdropping today, he was born with some of his organs or bowels outside of his body. I now think that he was being wheeled off to surgery last night. I've heard talk of more surgery as well. At least, I think. Clearly, this isn't a case where I can go walking up and asking what their story is.

I talked with Robbie's nurse a bit about it today. Clearly, she can't tell me anything. Mostly I told her that I'd been very upset about the goings on and that I'd been praying. She said that EVERYONE had been very upset. I have no idea what his prognosis is, but his mom was in a few times today and seemed fairly upbeat.

Please keep praying for them.

As for Robbie, he's had a couple of good days. I actually hate to even write that because we all know that the higher we climb, the harder the drop is.

He got his NJ tube placed on Thursday evening. Thursday night into Friday morning, he'd thrown up 3 times. I was very worried because the NJ tube is supposed to prevent that exact thing. The NICU staff's theory was that he'd gotten air in his tummy when they put a new ET tube in. (He extubated while they were doing the NJ tube, so they put a larger tube in. He'd outgrown the previous one anyway.)

But after the 3 vomiting episodes, he did much better. Yesterday was a pretty pleasant day for him. His saturations were much less up and down.

Today was even better. We Kangarooed for around 2 1/2 hours and the first hour, he didn't desat at all. You have to know that it wasn't uncommon for him to hi-sat and de-sat in the same minute before. So an hour without any alarms going off was pure heaven.

Even when he did desat a little, it was because he needed to be suctioned. They did exactly that, and he'd be good for another good run again.

Right now, they're working on weaning his vent setting down. He went down on several settings early this morning. They were watching him tonight to see if they could go down again. The doctor came and told me they were planning to extubate tomorrow. Then a nurse practioner said Monday. Who knows.

I have very mixed feelings about it, to be honest. I will be so glad when he doesn't need it anymore. But I also remember quite clearly how scary it was when he crashed last time. Super high CO2 levels, white lungs, a baby in hysterics. I know there are no rewards without risks. But I'm anxious.

That was actually another thing Robbies day nurse and I discussed today. The differences between men and women.

The subject came up because David went out with his best friend tonight. We drove seperately to the hospital and then David went to his friend's house from there. The nurse heard us say goodbye. She asked why I didn't go, too.

Honestly, even the thought of going "out" makes me feel panicked. I'm not ready for real social contact yet. One-on-one contact is really about all I can handle these days. And even that is sporadic.

I told her just that and she nodded. I was surprised she didn't think I was crazy. But then, she's been there 10 years. She's probably used to overwraught parents by now.

Anyway, that lead to us discussing how much better men are at compartmentalizing things.

David can say "this is what is good for the baby, so this is what they will do." And that's that.

Me- I know LOGICALLY that things are good. But it hurts me to see him go through it. The NJ tube thing nearly put me over the edge the other day. I cried off and on all day. It wasn't the NJ tube specifically. It was just ONE. MORE. PROCEDURE. I want to protect him from all of it. I realize that's impossible. But I just hate seeing him upset.

Tonight I gave him his bath. Which is hates. I don't blame him. He is out of his bed, under bright lights, rubbed down with a rough cloth on his super sensitive skin and generally just messed with.

After we were done, his nurse praised what a "great job" I did. All I could think was how great I was at torturing my poor child. Yeah, it probably sounds nuts, but if you could see him cry, you'd understand. You can't HEAR him cry because of the vent tube. But you can see his little face scrunch up and his mouth open wide to let out a silent scream. You can watch his heart rate go up on his monitor.

Of course, after we were done, he passed out cold in his isolette. He was clean & fresh with a new diaper and swaddled into his snuggli safe & sound. And sleeping, as they say, like a baby.

That's what gets me through. Knowing that all of this is leading to good things eventually.

Anyway, Robbie is 5 weeks today. I will have pictures tomorrow.



Mrs. Spit said...

Glad today was a better day. Thanks for your kind comments last night, they meant a great deal too me.

Still Standing Strong in A Bloom of Hope. said...

I prayed for you guys today and for that baby when I was in church today.

Good to know that Robbie's doing better. And thanks for your kind words on my blog. I cried reading it.

Two Hands said...

Can't wait for more pictures. I love looking at your little one.
Thanks for the update on the family too.
I know it feels like you are torturing your child. I know because I felt that way every time mine had immunizations and what you are going through is infinitely worse than that, but you aren't torturing him. You are doing what needs to be done in the most loving and gentle way you can. That's the best any parent can do.

Amy said...

Awww ... so glad that baby is still alive, though wow, his condition does sound scary. I'll pray the surgeries go well and he pulls through OK. And that has to be so hard to watch Robbie go through all of that. Praying he does well off his vent. Love you!

Elizabeth said...

I'm so relieved to read (a day late as it is) that the baby didn't die. I cried as much to read that as I did to think that he was gone.

I'll keep them in my prayers with you and your family.

Happy 5 weeks to Robbie and looking forward to pics.

Kim said...

I'm still praying for you. My daughter, B, absolutely HATED baths until VERY recently (and water still can not touch her face) and I'm convinced it's because they "bathed" her at the hospital by holding her under the faucet! I'd be traumatized, too!

Is there any way you can bring some softer cloths to make him a tiny bit more comfortable? I have no idea what the rules are, I just hate that you have to listen to him "cry".