Sunday, July 13, 2008

6 week update & pics

Well, it's been a shitty day. Both literally and figuratively. The poop issues continue. He's had another 6 hours of pedialyte and is now on straight breast milk again. It's not as bad as it was, but not great.

Every test they've done is fine. We're still waiting on the results from the stool culture. Could be an overgrowth of bacteria. We'll see.

There's been no more spitting up, which is good.

The doctor isn't terribly concerned. He doesn't really think the puking & the pooping are related to each other. And since his tests are good, he's not concerned. He is going to take it easy on the feeds (they lowered his volume a bit as well) but not stop them.

His breathing today was just not good. Lots of As & Bs. He had several right in a row after we'd been kangarooing for 2 hours. He went back to bed quickly and that snapped him out of it. But he had a couple more tonight before I left. It honestly wouldn't surprise me at all to get the call that he's back on the vent again.

The staff isn't terribly concerned. We get the "this is usual preemie stuff" line a lot. Which is good. And I'm trying very hard to count my blessings. As I was pumping this afternoon, I heard a mom go down the hallway crying hysterically. I don't know who, what or why. I don't think I want to. I already cried too much today as it was.

My eyes hurt from crying really. I really cried most of the day. Between lack of sleep, worry & dread about going back to work tomorrow, I have been a wreck all day.

Robbie's nurse was wonderful. She went the doctor over to talk to us even though really, she had already explained everything. She just felt like the doctor needed to talk to us anyway.

The doctor asked when I saw my OB last. He thinks I have PPD. Honestly, I don't think I do. Yes, I was a mess today. But I have reasons. And when Robbie improves, so will I.

The doctor was very sweet and talked about his wife & her anxiety during her pregnancy with their daughter & beyond. Turns out his wife is a NICU nurse. They have too-much-knowledge disease, too.

And the nurse then talked to us about choosing some primary nurses. Basically they'd be nurses that if they're working, they're assigned to Robbie. I asked if she was volunteering and she said she was thinking about it. I am, too. I think it's a great idea for a number of reasons.

1) Knowing the people is nice.
2) Less chance of having the couple of nurses I don't like.
3) Continuity of care is good for Robbie. They hand off to the next nurse with a full report each night, but it's not the same thing.
4) Having people that I trust makes it a lot easier for to leave. I don't have to wonder "will this person pay attention?"

Now I just have to pick my people and submit them. They don't have to accept. And that makes me nervous in a grade school way. I dont' generally give a shit if people like me or not, but people not liking my kid.. well. It would upset me. Even though they may have plenty of reasons for not accepting. They may like to do different things on different days to break up the monotony. Or they may just feel like Robbie is too much of a handful. Or maybe they don't like me. But still.

Several people came by to check on me because I was upset. Of course, that didn't help me contain my tears. It seemed like every time I'd get myself straightend out, someone would come by and pat me on the back and ask how I was doing. More tears. These people clearly haven't gotten my don't-be-nice-to-me-when-I'm-trying-not-to-cry memo.

And way too many people gave me a lecture about doing "something nice" for myself. OR going to a movie. Honestly, I get that LOGICALLY. Yes, yes, take care of myself. But honestly, the idea of going out somewhere makes me feel panicked. Even going out to eat after 12 hours at the hospital I would gladly live at the hospital if I could. That's not an exaggeration at all.

I drove by one of those lottery billboard which proclaimed that the latest jackpot was 33 million. I spent the rest of the drive day dreaming about how I'd donate good recliners to the NICU, stay at the nearest hotel and spent 18 hours a day there. It struck me later what an odd day dream that was. (Don't worry. I haven't completely lost it. In my dreaming, I also paid off my house & car and quit my job, too.)

But tomorrow I go back to work. I might try to sneak off to the hospital before work. I don't have to be in until 11:30 and I think maybe if I can get a little Robbie fix before work, maybe it'll help me get through the day. Then I can spend some real time there after work. It's a lot of driving (35 miles from our house to the hospital. Work is in between but only about 7 miles from home), but I'll live.

Anyway, enough of my whining.


Wow! This mask free stuff rocks!

Bright eyed on a nasal cannula

Back on the CPAP. Someone get this damned thing off my head!

Can you see how much bigger I've gotten? 6 weeks, baby!

Don't let the angelic pose fool ya!



Kim said...

I love those pictures! Keep your head up, girly... do what you need to do, you're doing a great job.

Just a thought, but could he just be having a (gasp) "normal" reaction to something in your breast milk? B wasn't a preemie, but she became a completely different baby when I switched to formula. I had tried to eliminate different potential irritants before switching, but nothing worked for us. I'm not suggesting you switch to formula, though. I'm just wondering if maybe you've been eating something recently that could be upsetting his tummy. I don't even know if that's possible with the kind of tube he has, but I figured I'd throw it out there!

Jenn said...

Wow, he sure has gotten big! :-)

Amy said...

He is so darling ... and I HATE it that you have to go back to work tomorrow! I hope you are able to squeeze in a Robbie fix before you go. ((((((((Trish)))))))))

Rachel said...

I'm sorry that starting work again tomorrow is stressful, but given everything that you've been through in the past 6 weeks I'm sure after a couple of days it won't seem like such a big deal. And Robbie looks adorable and very happy in his photos.

Diana said...

Such a beautiful boy! He looks like a fighter!

Osh said...

I know the feeling of anxiety of wondering if a professional will like your child or not...I was/am like like with all the school district staff...past doctors...Trish, I was obsessed with dressing Evan as adorable as I could so that when he went into his "autistic melts" and the schools would call, I would at least hold onto the fact that he looked good while doing it...the little things you know.

And I had the same lottery dreams...I was going to build the best school for kids lke Evan in Oshkosh, no child would be denied any therapy, no child would ever be arrested...
our situations are different in a way, but our minds I think our the same. We will fight for our boys until there isn't a breath left in our body.

Just Me. said...

Such a fighter he is...he has such beautiful eyes!!!!


Valerie said...

He is beautiful.

Sending lots of prayers to all of you.

Darreth Renelle said...

Wow, he's getting so big! What a cutie!! I know it breaks your heart to leave him there. And I know what you mean about the leave me alone I'm crying thing. When I was upset that Avery was in the NICU and I was discharged, people kept asking me if I was okay. "No, I'm not! I have to leave my baby here! It's not supposed to be that way!" But, I would just sigh and nod... it's hard doing that... I'm thinking of you all and praying for you too.

Anonymous said...

Trish, he is such handsome little man! I'll be thinking of you today. Going back to work was very hard for me and I had 12 weeks at home with Henry. Don't push yourself too much and don't expect too much from yourself. You guys are in my thoughts.


Me said...

He certainly is getting bigger!

Kristen said...

He really has gotten bigger! Grow, Robbie, grow!!!

I'm sorry to hear about his digestive issues. And I'm sorry you have to go back to work. There's no way I could be functional. You are doing such a wonderful job and you are one hell of a momma. XOXO

tryingin2007 said...

oh YAYYYY! look at the little boy!! he's adorable! and such a fighter.

I'm sorry you have to go back to work. that's really painful. please take care of yourself.

Heather said...

Hope you are feeling better today. Sometimes just getting some sleep helps.

Love the pics! Hope you get all the nurses you request!

S said...

My heart is with you today as you get back to work. Hugs to you!!!

Mrs. Spit said...

Oh, Trish, I read your entry and my heart fell for you. This is such a hard and long and dark and difficult place to be in.

Here's my 0.02 cents. I have learned through my mother's illnesses, and the month's spent back and forth from the hospital, and nights spent by her bed, when things go wrong, it's a crisis, and it's like running the 1000 M sprint through a three ring circus.

The problem is, you can't keep running at the sprint level for more than about 5 weeks. You have to realize that you are running a marathon. You have to conserve your strength, eat, sleep, try to be as normal as this new normal can be. It won't be the same, but it's important to make sure their is some sanity to it.

And I know it sounds cruel. And like I absolutely don't understand what your life is like, and how tired and frustrated and exhausted and overwhelmed and worried and frightened you are. And I don't completely. But I know about the hospital life. The first time someone told me that I had to slow down, take time for me, when my mum was very sick, I wanted to punch them. "Don't you know how sick she is?".

Robbie needs his mum not just today, but every day. To make that work, so that you don't kill yourself in the process, you need to remember you are running a marathon. Marathon runners alternate walking and running. When they do run, it's slower than sprinting. Look at it as conserving your strength for when that sweet boy comes home.

Also, just wondering, and it won't be as good as mummy, but the Edmonton NICU has a program where other's go in to cuddle babies. Is there a program at yours? Is there a woman you know who could cuddle Robbie while you are at work, and then you could cuddle him after?

Amber said...

I'm delurking to tell you what a beautiful boy you've got there! I feel like this is the first time I've really gotten to see his precious little face and boy is it precious! I'm keeping you guys in my thoughts every day. Hang in there.

-Amber (aka SomethingChangd from the Stickies)