Tuesday, August 5, 2008

Something's gotta give

The quick and dirty is that he gained 21 grams again today. No other changes, really.

He was fussy as crap tonight, though no one can really figure out why. I think he's gassy, they say his belly feels fine. I still believe my intuition over their belly poking.

I did not like either of his nurses today.

I slept like 5 hours.

All I ate today was a bowl of oatmeal.

Why do I share this?

Because I'm tired. And sad. And frustrated. And maybe a little angry.

His day nurse answered the phone with the tone that said "WHY ARE YOU BOTHERING ME?"

She answered the phone and when I told her who I was, her reply was "Yeah?" That is not an acceptable answer to me.

Turns out she's the nurse that my NICU friend (Robbie's girlfriend's mom) actually requested never to be assigned to again. I can tell why.

She was nice enough when I got to the hospital tonight, but David said that when he got there, Robbie was crying and of course no one was doing anything. His blood pressure on the screen (taken early in the morning) was way higher than normal. Usually that only happens if he's REALLY ANGRY when you take it. I can't help but think she'd gotten him hysterical and not given him a chance to calm down. And my friend says she had a preemie, so she should fucking know better.

His night nurse seemed nice and was certainly paying close attention to him, but I think I offended her. I had never seen her before and when I said as much- really just looking to get to know her- she instantly launched into how she'd been a NICU nurse for 23 years and she was very capable. I don't think she meant to sound defensive, rather was trying to reassure me, but I felt like we both walked on eggshells around each other after that.

The weekdays are so hard because I can't seem to put in less than a 17 hour day. And that's just from leaving the house to returning. That doesn't count the time to pump, pack all my shit & get ready in the mornings, or the time to pump, clean & sterilize everything at night. The alarm goes off at 7, and I'm rarely in bed before 2.

Work just pisses me off. I'm barely productive at all. My mind is just too easily distracted and then I rather dislike my new boss. She gave me a ton of crap about pumping at work and it wasn't until I basically threatened (sincerely) to call a lawyer that they shut the hell up about it. I feel no loyalty to the place at all. I'm normally a very loyal, hard-working, responsible employee, but it's gone. I just can't give a shit about phone service right now.

And eating. Well, eating sucks. My gallbladder/whatever issue isn't improving. I'm in some measure of discomfort almost constantly. And if I eat the wrong thing, it hurts bad enough to wake me up at night. I'm tired enough w/o losing sleep over this crap, so I've been mostly living on organic applesauce, Special K cereal bars and mashed potatoes & gravy from the hospital cafeteria. I ate some oatmeal today and felt just plain weird all afternoon & evening. I swear I can feel the damned thing in there spasming. I've lost something like 12 or 13 pounds in the last 2 weeks. Not that I don't have the extra weight to lose, but this is not a healthy diet. I'm fucking HUNGRY.

I see the doctor again on Wednesday morning to see what the next step is. At this point, I've begun begging the husband to just reach in and pull the damned thing out himself. The doc thinks it could be an ulcer, gastritis or just plain so much stress that I'm producing so much stomach acid that it's eating my guts all the way through. And while all of that would certainly make sense, the pain is so squarely right where my gall bladder is that I can't help but believe it's that.

And I think all of this has lead to just a general feeling of....unhappiness tonight.

Robbie had a couple of bradys tonight. He was fussy before his bath, and then finally settled in just in time to get him up to bathe, of course. So after his bath, I let him sleep for 2 hours and just chill out. He was doing fine. I got him out of bed and was holding him. He seemed content, but his oxygen saturation was just sucking. She checked him very thoroughly and couldn't find the problem and finally I just put him back to bed.

Then I cried.

She turned his oxygen up just a bit (from 21% to 25%) and he was doing much better, but then he had a couple of heart rate drops that just didn't seem to relate to breathing. I'm assured this is fairly normal for a preemie, but it still sucks. And knowing that he does better without me than with me sucks, too. So I cried a little more.

On my way out of the NICU, I called David. (He'd left before bathtime to come home and work on Robbie's room a little.)

I'm going to put in for my leave at work. I feel guilty about it. I could probably work as much as 4 more weeks and earn more money to stay off longer when Robbie comes home. But I'm just not functioning well.

Add to all of this that ever since we moved to the step down unit, I've really only seen 1 familiar face so I don't feel like we're getting any continuity of care at all and I just can't take it.

We can't seem to get the Primary Nurse thing figured out, so the only primary anything he has is ME. And while I'm spending 6 hours a day there, it's just not enough. By the time I get off work, across the city through traffic, it's nearly 7pm. Bath is at 8:30. So I can hold him for an hour.. maybe two if I get there around 6:30. After his bath he just seems to need several hours to regroup. So that's it.

And it's not enough.

Right now, we've got enough money in the bank that I think we can manage 4 months off. If we can get a decent enough tax refund at the beginning of the year, we can probably swing another 2. Maybe even 3. My job will pay for our benefits for 6 months.

So I'm putting in for my leave ASAP. I don't know how much notice I need to give, but I'm aiming to finish out the week and then be off. No more than the end of the next week.

Now I just wish I had some saleable skill that I could do from home.

I saw some earrings made from dog hair on etsy the other day. I'm off to find my cats..



twinboysmom said...

We had the same issues as you are having when our twins moved to the "special care nursery." Because they are stronger and healthier there were more babies per nurse and lots more "alone" time for the babies. We never had a nurse were didn't like until moving to the step down unit. WE tried requesting certain nurses, etc, with no such luck. At that point you do have to take a more active role if you expect any type of continuity of care. I wish NICU babies could have the same couple of nurses throughout their whole stay! I understand why this isn't possible but it would be nice. I hate the term "hang in their" but I have no other advice for you! It sounds as if you are beginning to reach the home stretch and try to take it one day at a time. My boys continued to have A's and B's until around 35 weeks gestastional age. It is true that they did just grow out of it even though it seemed like they never would!

mmr2006 said...

Hi there. I'm a fellow sticky but have never posted on your blog before. I check in on you almost every day, and I just want you to know you are in my thoughts. I can't give you any advice, just wanted to send along a big hug !!!

Mrs. Spit said...

Aww trish.

Wish there was something I could do.

Your exhausted. No one can live like this for very long. I'm glad the something giving can be work.

I can't give you coping strategies, but I can tell you that I pray for you every night and every morning.

Hang in there. There are better days to come.

Jess said...

((((HUGS)))) I wish I was close enough to take care of the other things for you, like housework, nursery, etc and you can spend more time with Robbie and David. I'm sorry it sucks right now. I'm sending you lots of prayers.

Anonymous said...

The good comes with the bad. It's good that he is healthy enough to be in a step down unit, but bad in that he doesn't receive the same level of care. I found this as well - and like the first poster - I just settled myself in the NICU whenever we were able to be there.

I am sooooo glad that he is getting bigger and stronger. And if you make some cathair earrings - send me the link! hehe


Two Hands said...

Poop. We need some mooses for you too. I'm glad you can take leave from work. Frankly I didn't know how you could handle it all, no human being I've ever met could. If I was in that situation, the sheer distraction would be enough to make a blow-up doll more productive than I would be. I hope your GI probs get sorted soon. Pain/discomfort is doubly exhausting, I bet Robbie is the only thing that gets you out of bed in the morning (that won't change, but later it will be because he is jumping on you).
I really really hope that things get better soon. If I had some cash, I'd send it to you and anything else I could find that I think would help (I have a cat too?).
Please let me know if there is anything I can do...

Rini said...

My step-mom is about to start a job at American Airlines. She has to work set hours each day, but it's all done from home with her home phone. I'm not clear on all of the details, but apparently she just handles a reservation line...

Anyway, you might want to do some poking around in all of that spare time you have (ha ha) and see if you can turn up something similar. It would save you the commute to and from work at the very least. And I'm not sure exactly what you do, but "phone service" sounds like you'd have marketable skills for the AA job?

Anyway. Hang in there, and remember how great Robbie has been doing! It's a good thing that they don't think he needs the same level of care anymore.

Heather said...

I'm so sorry things are still tough. Lots of hugs from this corner of the blog world. I think it makes sense for you to take some time off, especially because of the combo of Robbie's care and your issues with your digestive system. I do highly recommend you look into "The Hip Chick's Guide to Macrobiotics" The miso soup recipe in there might be very beneficial to your digestive system. And it had seaweed in it, which I've learned is very good for women after childbirth. Helps replenish all the vitamins and minerals the stress of childbirth has taken from us. And with your post-childbirth stress - no wonder your digestive system is out of whack! Oatmeal is also very good. Try putting some blueberries and walnuts into your oatmeal for some added nutrition. Fresh chicken soup with brown rice is also comforting on a rough digestive system. I know you're busy with Robbie, but maybe if you can make a big pot of it, you can have it in the fridge to eat all week. Hope you feel better soon.

S said...

I'm so sorry you are stressed. Don't feel guilty or stressed about taking leave from work. You have the rest of your life to make money. Take care of yourself! Hugs!

ONE OUT OF SIX said...

Hey you - it sounds like leaving work is ABSOLUTELY the right thing to do - for Robbie - and for YOUR health. And he needs you healthy in order to be able to meet his needs. I bet your stomach issues will begin to resolve once you're on leave - if only because being less mentally stressed will allow your body a chance to physically heal. Hang in there honey!

And Robbies new pics look GREAT!! He looks like a totally different baby - has a little chub in his face - beautiful!!

This too shall pass. You're doing great mama!!

Anonymous said...

I love you Trishie. I am thinking about you all the time.


Amy said...

Leaving work makes a LOT of sense right now; no one could sustain a pace like that for very long, especially with the emotional intensity and all you guys have been going through. Big hugs to you and I pray that Robbie cruises through special care and is home with you as soon as possible!! In the meantime, I will be praying hard for you and I'm here for you when you need to talk. Wish I could be there in person to lend more practical support! I love you.

Dazzling Rose said...

It looks like nobody's mentioned this yet so I figured I might recommend working for www.ChaCha.com. The money's really minimal but when every little bit helps, it's something. You answer questions online and make 15 cents a question. If you spend a couple hours a day you can make a couple hundred maybe a thousand dollars a month. If you want to use me as a reference, feel free - Angie.Rainier@comcast.net, sometimes it helps with the hiring process. I'm glad you're doing what you need to to keep yourself sane and I really hope this gives you some more time with Robbie. Good luck!

Searching said...

I haven't commented before, but have been following you and your sweet Robbie for awhile now. What an adorable blessing he is! Truly a miracle baby. I'm glad he is doing so well that he needs a little less intensive care. The a's & b's are SUCH a common preemie thing. Annoying as all get out when they are the only thing preventing a kid from going home (at my NICU every "episode" buys them another 5 days till they can go home). It is frustrating and upsetting when they happen.

I'm so sorry your kangarooing and holding isn't going well right now. Sometimes the babies just have a rough day. They def DO need their mommies and daddies there. You are amazing for being there so much. I am sure that is part of what is helping him do so well. You call the shots as much as possible and look out for him. Sounds like he's had more than his fair share of troubles, yet he keeps on going. He's one tough little preemie!!

You and Robbie are always in my prayers. Hoping today is your last day of work!

ps- About the primary thing. We pick the baby(ies) we want as a primary. Usually the sickest, tiniest get the most, maybe 4-6 nurses. I go look at the board and see who still needs one every time I send one home. Then I go and check them out, see which one will be there more than a few days, introduce myself to the baby, and when one really "clicks" with me, I pick them up as my primary. I love multiples and in level 2 I'll pick up the whole assignment. I think I'm pretty much the only one who does that, but I think every baby deserves a primary. I am absolutely infatuated with my primaries and love to do all sorts of extra things for them and their families. You might ask the next nice nurse you have what their policy is. Most people don't pick up a kid till the meet the family and see if they are fairly sane. (I end up with the "interesting" families alot because I can deal with that. It's awful having your baby in the NICU so I can take what they dish out- even if I have to call security sometimes). You sound perfectly sweet and Robbie is adorable. Just ask a nice nurse if they already have a primary and if not, would they please pick up Robbie because you really like how well they treat him, yadda, yadda. Cute kid, nice competent momma, wanting ME- I know I couldn't turn that down! Good luck!!!