Saturday, June 28, 2008

feelings

There is an email forward floating about about motherhood. In it, there is a quote about being a mother meaning having your heart walking around outside your body.

Being the mother of a preemie is like having your very, very fragile heart stored away under the keep of people you barely know, aren't sure you can trust and sometimes just don't like at all. And then you're expected to function.

Yesterday a friend from a message board wondered how I was doing.

How am I?

I am:

tired
scared
worried
weepy
scared
terrified
hopeful
hopeless
petrified
sad
thrilled
scared
worried
lost
tired
guilty

Pick a minute and any 5 of the above.

When Robbie was born and I asked how much time I should spend at the hospital, I wondered if I'd manage to stay 8 hours. Now I find it difficult to leave after 10 or 12. I cry all the way home.

Tonight I cried halfway home and then got mad.

This isn't right. It ISN'T RIGHT.
Babies should not go through this shit. When they're irritable, their moms should be able to pick them up and rock them. They should be able to pat them and talk to them. Moms shouldn't need a team of people and permission.

There should be a cure for pre-eclampsia. It's a condition that has been around well.. forever. And the answer is........bedrest? Which clearly just does NOT FUCKING WORK.

NICUs should have beds next to isolettes. And showers. Because moms with babies in the NICU should be able to live there.

Moms should not have to choose between paying their bills (going back to work) and spending time with their babies.

The sight of a pregnant cousin due within a day of a mom shouldn't make them jealous and sad.

None of this should be. And of course, I'm fully aware that life isn't fair and "should be" an "shouldn't be" don't mean diddly squat. But it sucks.

Robbie had an unsettled day. Nothing tragic, he was just cranky. His day nurse said he was only happy on his belly. He'd been cranky on his back and side early in the day. Not unexpected, and sometimes a baby has to do things he doesn't like.

She left at 3, having taken a few hours off to go to a wedding.

When the evening nurse took over, I kangarooed for a couple of hours, but Robbie got really, really hot and had to go back to bed because he wasn't cooling down as quickly as she'd like. He did cool down okay once he was back, though, so it was okay. But still scared me.

After he'd gone back to bed, shediscussed his lengthy ventilator requirements. She used terms like "chronic lung disease" and "respiratory distress." None of this is really decided until Robbie reaches 34 weeks gestation, but with as long as he's been on the vent, it's almost guaranteed. Dr. C already mentioned he'd be coming home on oxygen. I can live with that. Inconvenient- yes, but we'll manage. But thinking of the additional struggles this means for Robbie.. well.. it breaks my heart.

Then his night nurse came. Yep. The one I don't like. When I saw her come in the door, I thought "please don't let her be Robbies." No such luck. My heart sunk.

Another nurse came over to ask how I was doing and about Robbie. As usual, her kindness choked me up. I wasn't crying, but was clearly battling not to when the evening nurse asked her what she'd done to upset me. I explained my whole "don't be nice to me or I'll cry" thing and they looked bewildered. (??) Evening nurse hugged me as she left for the night.

Amazing the differences between all of them and night nurse. I hung out for a while and she seemed to be very attentive to him. I visited my friend who just had her daughter for a while and then headed back down to check on Robbie again.

As I walked in, he was alarming- his heart rate was over 200. This hadn't been a problem all day. His bed said he was hot, but when we took his temperature, it was normal. She even got me a 2nd thermometer to make sure. He was a bit fussy, but not so fussy that I would have expected a heart rate that high, so being hot would have made sense. But it wasn't the case.

I managed to calm him down and get him to sleep and his heart rate slowed a bit, though still higher than I would have expected. I felt sick thinking about leaving. I just don't trust his nurse to pay attention.

She was doing fine, honestly. She even went and got a new isolette because she couldn't figure out why his bed kept saying he was so hot when he wasn't. It was warming in preparation for him when I finally pulled myself away.

She was going to move him when she did his cares at 1am. It's 1:30 now. I figure I'll give her to 2, then call to see how he's doing. I'll give her time to get him moved and settled.

All I REALLY want to do is drive back up there and see for myself.

I just feel sick, really. It's MY job to keep him safe. I should be there. But I have to sleep and shower sometime.

So here I sit. Feeling worried, tired, worried, terrified, and scared. There's your 5.

--Trish

9 comments:

Osh said...

Welcome to motherhood. I hate to say it, but pick any of the 5 any day for the rest of his life...or at least how that is how I am with Evan.

LJ said...

Oh Trish - you're right, it isn't fair. You're doing an amazing job of protecting and loving him though. I am sorry that you all have to go through this...it just shouldn't be.

Amy said...

I'm so sorry you're going through all this. I wish there was something we could all do to make it better. LJ is right that you are doing an amazing job of protecting and loving him; I just pray that the day comes SOON when you are able to do it at home, in a relaxed environment with no strangers to ask permission of.

((((((((Trish))))))))))

Meghan said...

Sorry I haven't commented in awhile. Just wanted to let you know that I'm still thinking and praying for all 3 of you

and you're right...none of this is fair at all

Valerie said...

I can't even imagine what you're going through. I was a wreck when Tessa was in the NICU for a day, and I felt guilty about it because of what other families were going through.

You are a very strong woman, and Robbie is lucky to have you!

Jess said...

Agreed, it's not fair at all. It's not right and I pray that Robbie will be able to come home to your safe and loving arms very soon.

Elizabeth said...

I wish I could give you a hug, and then I wish you could just hold Robbie, any time you or he wanted. I know in time that will come. Prayers and hope for you both that today is a good day.

Stacie said...

Hugs to you...it will get better. Trust me. It will.

Anonymous said...

((hugs))

I'm so sorry. I just want everything to be good for you guys.

Love,
Ginger