Saturday, August 2, 2008

Long Post

+41 grams
He's at 3lb 8oz. I *MAY* have started referring to him as "my little moose."

He's doing well.

It's very strange, to be honest.

I was talking to Robbie's NICU girlfriend's dad yesterday. He was talking about how strange it was to be in the new unit. To feel like things are getting better.

A bunch of his family is in town this weekend and they all had a get together last night. He said it felt really strange to be doing something so social. He didn't realize how used to the little bubble of NICU isolation he'd gotten.

I definitely understood. It's weird to do "normal" things. To talk about something besides oxygen saturations & heart rates. I told him that I felt like I'd been standing on the side of a cliff for the last 9 weeks and caring about things like my timesheet at work just seem insane.

He liked my cliff metaphor and nodded, "Just waiting for the wind to blow you over or blow you back." And it's true.

Even now, that it seems like the storm is calming, you just never know when lightning may strike.

For now, though, he's doing well. Since we've moved to the step-down unit, I've met new nurses. When I bathed him last night, they were asking how comfortable I was with getting him bathed and put back together. I said I was pretty comfortable. That I used to have a little difficulty with the leads but now it's no problem. One nurse nodded sympathetically and commented that we'd clearly been there too long.

Indeed. Nine weeks is a long time. What amazes me even more is that he's 9 weeks old and should still be in my belly. I look at him and think how I wouldn't have even known he was a boy yet.

I wouldn't have known yet that he likes to have his temples stroked but hates to have his underarms touched. (This makes temperature taking time very unpleasant.) I wouldn't have known that he calms his heart rate when I sing, that he hates loud talkers as much as I do, or that he snores a little bit sometimes. Amazing.

Of course, lest you think that things are all peaches and cream, I want to share a little more about life in the NICU. Even when good things are happening, they're often tainted by the injustice of it all.

When I came in on Tuesday and they told me they were going to try to feed him on Wednesday, I was ecstatic. I asked if there was any way I could be there.

The nurses said they were pretty sure they could arrange it so that I could be. And if not, they'd take lots of pictures. I offered to leave my camera behind so they could video it. They didn't think that was a good idea, but promised lots of pictures but were fairly certain I'd be able to be there myself.

So when I called on Wednesday morning and the nurse announced brightly that he'd just had some milk, I was crushed. She passed me to the occupational therapist who was cheerful and positive and going on and on about how well he did.

She'd given him a drop of milk from a dropper onto his lips. And put a little more on a pacifier. He'd sucked very well & rooted for more. She talked about how good he was at getting his hands to his mouth. That's a good developmental cue. It was hard not to be excited again because she was so positive.

But as I hung up the phone, I was upset. I had asked to be called.

I wondered if there were pictures.

As the day wore on, I got more and more upset the more I thought about it. I was a mix of anger & disappointment. I knew I was just in being upset that I hadn't been called, but wasn't sure if I was being silly about wanting to see this drop of milk so badly. All I knew was that I was upset.

It was that kind of upset that trickles into everything else. Where little things just bother you more than they should.

By the time I'd reached the hospital, I'd actually worked myself up into a fury. It was Wednesday night, which means it's labor & delivery tour night.

Why is that bad, you ask? Well, they bring the lovely, happy, clueless pregnant couples down to take a peek at the NICU. More than once, I've been sitting in a recliner, blissfully holding my beautiful son only to have the class leader come in, open the blinds that were literally only 2 or 3 feet from me, spilling bright florescent lights into his eyes, to allow 30 or so strangers to openly gawk at the tiny baby.

It's infuriating. I thought I was alone in my annoyance about it until one night the dad next to us got up and closed the blinds again almost immediately. I told him thank you and he looked angry and commented about how much he hated that. I nodded and asked if he didn't appreciate being like the penguins at the zoo. I suddenly had sympathy for the lions.

Another day, the mom across from us got up and did the same, asking me if I "minded" if she closed them again. Of course, I was adamant that I was quite appreciative. She laughed and commented about feeling like the monkey house at the zoo. It seems we all had very, very similar feelings about it.

Wednesday night, I toyed with ideas of what to do when the tour came through. I ranged from taping a sign on the side of Robbie's isolette that faced the window that said quite simply "FUCK YOU" to screaming at the woman that we are NOT circus freaks.

As it happened, I was stuck in traffic and passed the tour leaving the hall as I was entering. I didn't get the opportunity to be offensive at all. When I walked in, I asked the dad next to us how the night was going. He looked angry again and said the tour had just come through. I told him I'd passed them on my way in. I nearly snarled as I said it. He laughed and said that he'd been disappointed that I wasn't there because he knew I was gearing up to say something.

So, of course, I was in a bit of a foul mood already.

And it was chaos in the NICU. It was shift change, so we had double the people there. There were a couple of admissions coming in, which is always hectic. The physical therapist showed up just then and she had a trainee with her.

Just then, the nurse from the night before came to say hello and perked brightly, "Did you get to feed him today?!"

All I could do was shake my head. "No. They didn't call me."

She looked stricken. She was speechless. Finally she managed to squeak out "They.... did it.. without you?"

I started to cry. I was trying to talk myself out of being upset, but there it was. Everyone around me looked uncomfortable.

The PT asked what they didn't call me about. She was confused. I explained that I'd asked to be there for his first feeding and they said they'd call but they didn't.

The PT looked shocked. She asked who fed him, "A nurse?" I said no, it was an OT. She seemed stunned. She insisted that the OT couldn't have known that I wanted to be called.

All I could do was shrug and say that I didn't know what happened. All I knew was that I wanted to be there and I wasn't. I'd missed his first taste of milk. Then I insisted we get down to business (she was there to teach more infant massage) because I was really trying not to lose it.

She gave me the lesson and left.

David and I headed downstairs to get something to eat in the cafeteria. I cried all the way through dinner.

I asked David if he thought I was wrong for being upset. He hadn't said much and I was getting the impression he thought I was being ridiculous.

He seemed to know he was treading on dangerous waters. He would only say that it didn't bother him. It needed to be done, it got done, it went well, he was happy. Ever the pragmatist.

I still couldn't pinpoint why I was so hurt. But I was.

When I got back upstairs, I told the nurse that I assumed that she'd passed the information along that I wanted to be called. Clearly it had been on her mind as she'd asked about it first thing. She explained that not only had she passed the information on at shift change, but that the first OT had shown up before she left and she'd actually sent her away. That OT said she would trade assignments with another OT that works into the evenings just so that I could be there.

I told her that when I called a little after 8am, it was already done. She was clearly angry about it. She apologized and said she felt terrible for even asking about it. I told her not to be. I was excited, too. It just hadn't worked out.

After I sat for a while, I decided I couldn't let it go. So I went to the charge desk. The charge nurse that night is one that I'm friendly with. I explained to her the situation. She apologized and then referred me to the nurse manager.

I told my story again. I tried very hard to remain calm, but of course being me, I cried. AGAIN.

I told them that I was sure it sounded like a minor thing to everyone else, but it was important to me and I'd been promised a call that didn't come.

They told me not to explain. They apologized and promised to investigate.

That night, I thought long and hard about just why I was so upset. It's just a drop of milk, after all. He's gotten a ton of milk through his tubes. Even tasted it as he's spit it up a time or two. Why was it so important to me?

Finally, I realized how much esteem I have built up into my milk production.

I don't have much control over anything. Many other preemie parents that I've talked to have expressed feeling like bystanders in their baby's lives. I really hadn't felt that. Yes, I felt helpless. But I had felt like I was part of his team of caregivers. Yes, the doctors & nurses were doing more of the heavy lifting, as it were, but I really felt like we were all part of a team of people doing what we hoped was the best for Robbie.

There is a lot made of a baby's relationship with his mom. His dad, too, of course, but truly- his mom. He knows her scent, her sound, her smell. One day one of the volunteer baby cuddlers was talking about watching the difference between him holding a baby vs a mom. The baby's heart rate calms when he has his mom. His oxygen saturations improve. It's a connection that can't be duplicated.

In a healthy, full-term infant, the baby spends the first weeks of his life with his mom a lot. Whether he's fed by bottle or breast, his mom holds him close for hours at a time. She's the one who changes his diapers, soothes his hurts, rocks him to sleep, provides for him.

In the NICU, a mom is lucky to change a diaper and take a temperature every 4 hours. When things calm down, and you're really, really, really lucky, you get to hold him for a few hours a day.

It's the nurses who change his diapers, check on him, watch him. More often than not, it's a nurse who calms him, who talks to him and tells him it's okay.

The ONE thing I could do for him that no one can is make milk. Even if he got donor milk, it's not as good for him as mine is. My body knows what he needs. It knows that he was early and needs more vitamins. It provides immunities against germs we may share.

The day he was born, when they took me down to see him and I asked through tears "Is there anything I can do for him?" his doctor replied immediately "Make milk. Go pump. We need colostrum."

A couple of days later, when I'd finally made enough drops to actually take to him, I felt like I'd won the lottery. I'd finally done it! I'd done something right. My body, for once, hadn't let my baby down. I couldn't get pregnant, I couldn't stay pregnant, but finally, I could do SOMETHING.

Maybe it was prideful. I don't know. But I was so thrilled to be able to do something for him. Feeding was ours. Mine and his alone.

And when she gave him that first drop of milk in the mouth, it was like it had been taken from me.

Logically, I realize, it was still MY milk. I still did it for him. But I wanted to be there to see his first reaction to it. And I wasn't. There's no getting that back.

The next morning, I called to check on him and the nurse from the day before apologized. She said it was "miscommunicated" to her what I was asking. And "as far as [she] is concerned, he just got a pacifier." But that she was sorry. I think she was sorry I was upset, but honestly thought I was being silly. I let it go.

That night when I got to the NICU, the nurse mentioned that the OT was coming down. I thought she was going to work with him again. Turned out that she wanted to apologize in person.

She was in tears. I tried to explain my emotional attachment to the milk. She stopped me and told me not to explain. I wanted to be there and I should have been able to. She said she's usually quite a stickler about not doing things for the first time w/o the parents there, but she hadn't even thought about it. It was a sincere apology and it was appreciated.

It doesn't bring that moment back, but it helps that it may stick in her mind and that maybe it won't happen to another family.

We now have notes taped to both his charts that he is not to be fed a bottle without us present. We are to work with him a bit on oral stuff. Stroking his cheek. He gets to nuzzle my breast, lick, suck, whatever he finds pleasurable.

It's weird to sit in the NICU with my boob out. They'll get me a screen, but there's really only so much privacy. But the look on his face when he realizes he's licking somethinng that tastes good is worth it. It's a curious pleasure. "Oh.. that's...nice.."

She's going to work with him a little, too. And as we're able to pull back his air flow rate (he's still getting 5 liters of air through his nose) it'll be time to actually start feeding him a bottle.

And I will get to be there for it.



Kristin (kekis) said...

Oh, Trish. I would have been furious had I been you. You should be extremely proud of yourself for taking your time to process it and following up with the nurse manager. Bet it doesn't happen again!

I'm glad your chunky monkey is progressing so well. Hopefully "Big Robbie" has turned the corner and will continue to grow & the lightning strikes are just little claps of thunder.

Still keeping you all - you, David, Robbie & pup - in my thoughts and prayers.

Amber said...

What a moving post.

I've been watching your and Robbie's story very closely and am so thrilled for the strides he's making. I'm just sorry that *you* had a set-back.

Hang in there - we're all rooting for you.

Amber (aka SomethingChangd)

Anonymous said...

Don't apologize for feeling the way that you did. You have every right to. Especially when it feels like there is so little positive, it is always the little things that count.
I'm just a lurker (and one of those evil fertiles), but I'm so happy to see that he is doing better. I think about you guys every day, and I try to send all of the positive energy I can your way.

ONE OUT OF SIX said...

This post makes ME want to cry. You explain yourself perfectly. If there is a silver lining - it sounds like the NICU folks really ARE good people - and truly care that they screwed up - and that you were so upset.

So glad your little man is doing better. Thinking of you.

AngelsAmid said...

I'm sorry that happened to you but hopefully from this point on it will never happen again :( I'm glad you said something.

I can't wait to hear about his first experience with a bottle :) from you first hand ;)

I'm glad he's doing well. I wonder if they could skip the NICU tour :-\ think you could say something about that?

Two Hands said...

Aw crap, Trish, I'm sorry you missed such a monumental thing for both you and Robbie. I would have EXPLODED (I still might).
I'm glad they were apologetic though. At least they understood (to some small degree) the terrible blunder they'd made. Perhaps they will make great strides now NOT to make them with you or anyone in the future.
I'm so glad that Robbie is doing so well though. He is such an amazing person. Even though he is so tiny, he inspires me so much (guess the apple doesn't fall far from the tree).
Sending you love and prayers and big, big hugs.

Amy said...

Oh, Trish, this post made me cry. I'm so sorry you missed that moment but I'm glad that you spoke up and in the end they were apologetic rather than callous. The notes on his chart sound like a good idea, too.

And way to go, Robbie and Mommy, for helping Robbie get so big and strong!

Dazzling Rose said...

I've been following your blog since it was announced on The Nest that you'd gone in to early labor. I'm so sorry for all that you and your family have suffered and I love to hear all the good progress that Robbie's been making.

I just wanted to comment today because it broke my heart that they would do something so personal without you. I don't know what would allow an NICU nurse to "not think" a parent would want to be there for such a milestone. It's great to hear you've been able to work with him on getting more comfortable with the breast though and that you'll be able to see him feed with a bottle soon.

I can't wait to hear more about how well your little moose is doing - and I hope you get a chance to tell off the tour group soon. I didn't tour my hospital, but I'm a little surprised they think that anyone in the NICU would be comfortable being gawked at.

Stacie said...

Trish. Hugs to you. That just totally sucks. At least they had the decency to apologize. While it doesn't take away the pain, hopefully it takes away some of the sting. Bravo for standing up for you and Robbie.

My thing was the first bath. I so wanted to be there for that bath, (I wasn't) so I can relate to what happened to you.

I am keeping my fingers crossed that the good days continue and Robbie is home in your loving arms before too long!

Sheila said...

Trish - I know how you feel in a way. When I had my daughter I was in ICU for 2 days and didn't get to see or feed her. Meanwhile, friends and relatives saw her all they wanted (she was fine, I was not). Anyway, I remember giving my husband strict instructions that no one should feed her except him until I get a chance to - no grandparents, friends. I don't think he quite understood either but its a mom thing. We strive for any connection we can.
You're doing a great job and soon these days will be a distant memory and you will be nursing away.

Valerie said...

Not having been in your situation, I can't truly understand what that was like. However, being a mom, I can also totally understand it. I'm so sorry you missed that moment.

I'm thrilled to hear that Robbie is getting bigger and growing strong. Best wishes to all of you.

Elizabeth said...

I feel stupid to cry as I read this, except I can imagine what you are feeling. I'm holding out for the moment you write that you did feed him personally and this not so good memory is balanced.

Love, hugs, and prayer.

Osh said...

Trish, this is so ghey, but you must now know that Robbie and Dillinger weigh the same now!

seussgirl said...

That stinks that it was so rough; I know we got quite upset over things we thought we should have been called for that were deemed "no big deal." Things like walking in to find one of our boys getting a new tube put in that wasn't there before, and going off oral feeds. Especially when that was supposed to be the first feeding where WE were going to give him a bottle.

We were also quite competent with the daily care activities by the end; the nurses figured they didn't have to do anything for our boys anymore, we could take care of it! So we mostly just chatted with the nurses while we went about their care.

And yeah - those screens leave much to be desired, don't they? I tried to remind myself that everyone else was in the same boat, and it wouldn't be weird. And tried to concentrate on the boys.

Still wishing you well!