Wednesday, March 9, 2011

Day of Life: 71

My first full week of work went by in a total blur.  And the only thing that I know for sure is that I'm doing a million things right but I'm not doing any of them well. in general...suck at them all.

(Unless you have anything to do with my employment status or the amount of my paycheck, in which case I am, in fact, doing a million things and I am totally rocking all of them.)

You know how sometimes?  There's a bunch of shit going on?  And you're all, fine.  I can handle this, but this is all.  I can't handle one more thing.  If one more thing happens?   I'm going to jump out the window/poke out my eye/pull out my hair/drink ten kegs of Christmas Ale.

It seems that I have added that One More Thing by going back to work and now I pretty much feel like I'm in a tailspin.  Get up, get ready, get Olivia ready, get to work, go to the hospital, go back to work, go home, go back to the hospital, go to bed.  It's been a week and I'm staring down the tunnel at next week and wondering where is the light?  Ya know? 


I had been trying to get up the nerve to talk to the charge nurse in the NICU about getting a primary nurse for Ainsley.  It's getting a bit old to hear, over and over, "well, she's doing * this * but I don't know her so I'm not sure if that's typical."  Which...OK.  I'm sure it's in the novel of notes in the computer but damn if it wouldn't be nice to have someone with her consistently who would just know.  Because I'm at work, being all worky (and kicking ass at everything in life, in general) and I'm not here. 

And nobody is here with her all the time who knows her.  Which is annoying but not really anyone's fault, either.  She's pretty much another baby in another isolette that needs fed and changed and can't really breathe.  Blah blah blah she's just little and needs to grow and basically we really just need to wait and see.

So I finally asked to talk to the charge nurse and apparently it's voluntary.  Being a primary, I mean.   The nurse has to want to do it, which makes sense.  And guess what else?  You need to ask.  I need to ask someone, "hey, wanna take care of my baby?  Since, you know, I can't and everything."

Here's what I'm getting at: I'm afraid of rejection.  Because if I ask someone to care for Ainsley, maybe a bit beyond the requirement of Don't Let Her Die, and they say no?  I don't know if my delicate psyche can take it.  I'm like one comment about my ass being fat away from confining myself to the house surrounded by Twix Bars and beer.  Lots of beer.


When they do rounds, they start off by saying the baby's day of life.  Today is Ainsley's 71st day of life. a bit of a grouch.  We've been trying to bring up Olivia's intolerance to milk and soy protein to the nurses, because Ainsley has had the same irritability and terrible diaper rash that plagued Olivia's first few months. 

(Oh, yes, and reflux.  Of course reflux.)

And everyone is all YAY FOR BREASTMILK!  But I think the breastmilk is making her ill because it is my frozen milk and I ate dairy.  So I'm all YAY FOR NEOCATE!  And finally finally!  We got someone to listen to us, and she will be on Neocate after my milk runs out in a few days.

4 pounds, 10 ounces: I'm little and wee! 
My lungs are for crying, not breathing.  Get over it.

Don't get me wrong: the cute greatly outweighs the grouchy.  I'm always shocked at how fast 4 or 5 hours can pass.  Time flies when you're holding an adorable baybee.


HereWeGoAJen said...

Maybe put a sign up on her somewhere that says "want to be my primary nurse?" But then you couldn't pick. Or "taking applications for my primary nurse."

Mom of the Twinkies and Tot! said...

Ask. She's a sweet innocent baby, who could say no? Our hospital didn't call it "voluntary" and we had a list of a few nurses as our primary nurses and it made me feel so much better to have them. There were still days when we'd get a random, but oh, how I loved the primary nurses. If you feel like you've clicked even once with one of the nurses, then ask for her. Even if you don't remember her name, describe her to your social worker (do you have a social or case worker there? You should) Ours was the biggest help when we had problems. I'm so sorry you are still there, I surely thought you'd be home with your sweet girl by now. Have you discussed with her pediatrician at the NICU the possibility of home on oxygen & a monitor. One of our girls, Lilah, got to the point where she was ready to be home minus the breathing. So home we went with monitors & oxygen. It wasn't my first choice, we really did try to get her off, but for some reason, she needed it. She would be completely fine with the O2, no desats or anything but the minute we tried her off beeping she would go. She was on it until she was four months old. It was hard but having her home was so wort it. And towards the last month-month and a half we were weaning her off of it via the pulmanologist. Ask questions, lots of them. You are her momma! I give you props for going back to work, I had debated it with the girls as well but never did. I wish I had almost so that I could have been home with them longer once they came home from the hospital. Luckily my mom watches them, so leaving them after being born so early wasn't as hard.

Alyse said...

Hang in there.

Remember infertility? And how there was no light at the end of the tunnel? And life sucked and you didn't know how you could manage to get up and take a shower let alone care about eating or work or other feelings? I lived it too.

And now you have two beautiful daughters. And one day, this will all just be a memory. You'll get through, Olivia will get through, and that sweet baby Ainsley will get through. YOU CAN DO THIS.

Infertiles are natural ass-kickers. Keep on truckin!!!

Brooke said...

Im not sure Ive commented before, but you spilled your heart out in this post and felt I should say something.

The above posters said it perfectly ~ so DITTO to the above.

You will get through ~ and yes Ainsley is CUTENESS!!!

Sue said...

She looks wonderful - I hope she can home with you soon.

AmbyLand said...

This just sucks. I will come and ask for you. I will fly to jennepper and ask whichever nurse you like to be Ainsley's primary. I wont take no for an answer. You know though probably all the nurses want to be the primary they are just afraid you will say no. Or we can all just hold your hand. Just let me know.

teacher lady said...

Oh Jen...I can't even begin to really understand just how hard this must be for you. But, I do also know that you will look back at this tunnel and truly be amazed you got through it, but you will have. Hugs.

And your butt...totally looks awesome.

Lindsay said...

My first dealing with stress I was so unprepared because I had handled my entire life so well up until then and I had a really hard day that started really early with my best friend going in for surgery for potential cancer in her thyroid. Halfway through the day they came out and said it was cancer and went back to go remove some more stuff. Then late in the day I was driving home and I needed gas. For some reason needing gas made me so weepy and frustrated and angry and I had no idea why. I think I was in the place where if one more thing went wrong I was going to crack.

Hang in there. I am thinking about you and your family. BTW- your comments on your pictures are HILARIOUS and of course you do everything perfectly!

jaysaint said...

AmbyLand is right. I'll bet your favorite nurse is blogging tonight about how she wishes you'd ask her, but she's afraid to offer.

Happy 71st, Ainsley!

areyoukiddingme said...

Um...the primary nurse thing? Sounds like a good job for Mark. Guys are used to rejection, right?

She's a little teeny beauty, though. Maybe once her diet gets straightened out, she'll decide that she can use her lungs for other things.

Work is one of those things you can do in your sleep anyway....

Greta said...

Well it looks to me like she is getting some chunky on her!

I can't imagine how overwhelmed you must be and with no break in sight. You're an amazingly strong's evident by the fact that you're still standing/talking/breathing/thinking.

Hang in there.

Amy said...

Hey, Mark shaved his head in solidarity with Ainsley! What a rockin' daddy :)

Thinking of you and hoping you'll be home with baybee soon.

Dana said...

Jen, this post broke my heart. You are being amazing during an impossibly hard time. You didn't even add to your list that you are grieving the loss of Evelyn. There is SO MUCH going on. This is one of those times to just be ok with not being ok.
About the nurse, I think it would be cool and funny and very Jen-like to do a "personal ad" for a primary nurse. "Enjoys long walks on the beach (in a stroller)", etc. I'm not as funny as you but you get the idea. Also, promise to bring food. Not that you have time or energy to cook anything, but just promise anyway and you can show up with McDonalds and the nurse will be happy.
My 2 cents.
You can do this. You ARE doing it. Thanks for inspiring me.

clearness said...

You don't know how much reading this makes me want to move your whole family down to the hospital near me and then I could just sit and hold the baby every day and I could learn the lingo and then I could tell you what's normal for your little peanut.

Ask......find a nurse you connect with and tell her how much you are loved and how she has a choice. Choice one? She says yes to being in charge of taking care of your little angel and you blog about how angelic the nurse of your dreams is......OR....Choice two? She says no and you blog about how she is fat and ugly, has terrible hair and is a horrible nurse.

nyanarose said...

Oh, man, I have a hundred days on you (and counting) and we only have one primary. We've been rejected more times than we can count (most cite wanting more experience, others just came off a long primary...). But bite the bullet and ask anyone you click with. Primaries make the NICU a million times easier.

From one still walking the NICU road... it does get easier, but it doesn't get any easier, if that makes sense. Hang in there!

Brandi said...

Delicate psyche? No way. You are hard-core ma'am. You march right in there and pick the nurse you want and you say 'yo, you're taking care of my kid.'

I've been lurking and praying... and you just amaze me. Hang in there.

And, that bitty baybee is GORGEOUS!

Carolyne said...

D'ya know, I bow down to the exraordinary ability you have to do the things you're doing and still be standing at the end of the day (or sitting with your gorgeous baybee).

When I think of my life I realise just how easy it is but I still bitch and moan. Things are so sucky right now but you are one tough cookie and I think you're great!

Milla said...

Oh my goodness she is so gorgeous (mm, she looks so nibbleable). Well done on sorting out the formula thing, sounds like you're accomplishing a million things pretty well to all of us. You are covering so many bases at once and you're only one (kickass) woman.

I know nothing of what's normal but having to ask? I can totally understand that getting a kick in the teeth in this realm could push anyone over the edge. Like everyone says, you can do this. You are super, in a non-sarcastic way, and you are going to keep doing what needs to be done for Ainsley and carrying the hige weight that you are shouldering and get through this.

I wish I could help or make it easier, as it is I am thinking about you all and admiring the way you're keeping your chin up and getting through. x

Laura said...

Definitely ask. We had about three primary nurses, which was fantastic with their shift rotations. Our babies were similar to Ainsley in that they just needed to grow (then hurry up already!) and that made them very appealing to a primary nurse as they were easy (and adorable). You'll likely be surprised how many would say yes, I mean seriously, look how adorable she is! And another plus...nurses hate having to prep breastmilk for the wee ones (someone else's bodily fluids that could spill on you...ugh) so having her on formula works in your favor.

Julia said...

When my son spent ridiculous amounts of time in the hospital (different situation), we had a primary nurse on every shift. It was awesome--it really does make a difference. They picked up subtle changes in his condition before I did! I hope you get a fabulous primary nurse. Ainsley is HUGE! Okay, she just seems that way because of how far she's come. Adorable!

Brenda said...

I favor setting up a funny "help wanted" sign. However, I am absurdly afraid of rejection. But if they look at your beautiful baybee, how could they say no, really?

You are kickin' a$$ and takin' names just by still staying half-way sane. This is more than just a tad stressful.

hatesocks said...

You are doing amazing, Jen. Trust me. Trust all of us. Thank you for being so open and honest with your feeling (in a humorous way of course, which you don't HAVE to do, you know).
Ask! You may lose something small( your pride) but you may gain something wonderful.

Happy 71st day of life, Peanut!

Faithful Infertile said...

Oh, I SO feel your pain with the formula. My 26 weeker was doing great on breastmilk, but she wasn't gaining enough weight for them, so they kept trying to feed her a high calorie formula. It made her have HORRIBLE A&B's. I'm talking O2 sats in the single digits. Scared me to death. No one would listen to me that she had an intolerance to the formual. They kept saying, "it would be rare." RARE, not IMPOSSIBLE, right?!? I finally spent well over an hour going through her chart and documenting that every time they added the formula, resulted in these episodes. FINALLY one of the doctors listened to me. She didn't gain weight as quickly as they wanted, but she was HEALTHY. I dried up when Marleigh was 9 months old. We tried EVERY formula imaginable and the ONLY one that didn't make her sick was Neocate. It is so expensive, but well worth it. Marleigh turned 2 in January, and is a very healthy little girl, but still skinny. She's in the 65th percentile for height, but only 5th percentile for weight. I just think she will never be a big girl.

You know her better than anyone. I would keep pressing about anything that concerns you. She obviously can't do it herself. Doctors are great, but they don't know a baby the way a parent does.

We were lucky to have a nurse volunteer to be Marleigh and Natalie's primary. Julie was a Godsend! She was their nurse about 80% of the time. She actually caught an infection early in Marleigh. Early one morning, Marleigh wasn't being as active as normal, so Julie informed the doctor, and they started antibiotics. Sure enough, Marleigh had an infection. I would be if you ask, one of the nurses would be happy to do it. Or better yet, have Mark ask.

I'm praying things start progressing for you guys. Marleigh was about 4.5lbs when we took her home. It seemed like most the other babies were around 5lbs when they went home, so I'm sure you're getting close! You might ask your doctor about taking home an O2 tank & monitors. Even though Marleigh was off of oxygen when we went home, they sent us with a tank and with monitors. Hang in there, Mama. You're handling things wonderfully!

postwriter said...

Find an advocate in the hospital to be with you when you ask. Social worker, chaplain- they will all be glad to stand with you on this. People don't take advantage of chaplains enough. They can help with many things.

Wow, she is growing! Now if her lungs would just kick in, huh?


Shannon said...

You are a Rockstar!! Ainsley is adorable & will kick ass just like you!! Sending healthy vibes your way!

Ainsley is the weight of my twins when I brough them home, so hopefully she will be home with you soon!!

alittlebarefoot said...

The view from the cheap seats is that you ARE rocking at the most important things. Keep doing what you're doing and know that we are all thinking of you and sending love and good thoughts your way.

Crabby Apple Seed: said...

Watch the nurses. Pick your favorite. Ask him/her. S/he will be thrilled that you asked, I swear. I'm a nurse, and I don't know anyone who ever responded badly to essentially being told, "You're our favorite, will you take care of our child all the time?" Really, we love to be asked, I swear.

Kathleen said...

Get that primary nurse!!!! But get your husband to do the asking. You don't need one more thing to stress about, and I know what you mean that any rejection might push you over the edge right now. Have him do it, and he can take the rejection if it comes to that. Then he can go ask another nurse, and another and another until he finds the right one. Hang in there!

Sara said...

I'm shocked! In our NICU, every baby had a primary although the nurses did have a say in (or a fight over) who they got.

We actually had two primaries who worked opposite shifts which was great because the same one was there all day and the other was there all night. I bet if you asked you would have someone jump at the chance, but I am really surprised the hospital doesn't have a policy about automatically assigning primary nurses to babies.

My son left the NICU on his 117th day of life and they didn't tell me he would be going home until Monday(discharged on Thursday) so we only had a few days notice for me to go in, do an overnight and get all the paperwork in order. It sucks, but it will all be worth it in the end when she is HOME!

afeeleys said...

New reader durlurking- I'm so sorry you're having a hard time and I hope things get (a lot) better for you soon. You seem like a truly wonderful person and you deserve to feel better and have things work out!

As for the primary thing- I know it feels awkward but find a nurse that you think is nice, compassionate, and you could connect with and just ask. I'm a nurse and I wouldn't turn down this request from a sweet, genuine, loving family member. Or if you really feel like you can't then ask the charge nurse to ask around for you. You're good people and she's a sweet baby who is getting there- I don't think you'll have trouble finding some volunteers.

Good luck!

Parsing Nonsense said...

Oh man, I wish I could just give you a huge hug and then bake you some brownies.

You can do this. I know it's overwhelming, but just keep putting one foot in front of the other and love your girls. You are tough like a bear. A hot, cute, girl bear.

Jeanne said...

Jen, you ROCK!! You are doing an amazing job!! You have an absolutely beautiful family. Your girls are gorgeous! When Ainsley comes home (and I hope that will be soooon!) everything will come together.

I'm so so sorry for your loss :( I hope you are surrounded by helpful and supportive friends and family. Wishing you the very best.

Spit Happens said...

It made all the difference when we finally got a primary nurse. I can't believe no one has offered yet because she is such a cutie!! Who wouldn't want to be her primary?!?! I know the feeling of not wanting to ask because of the whole rejecty type feelings, but seriously I don't see why they would say no. She is super darling and perfect. And you are awesome. Also, Lexi was soy and dairy intolerant and my breastmilk was like poisen to her so we got her on elecare which is like $50 a can but when you're in the hospital milk it (no pun intended) because it's really just all lumped together right? By the way have I mentioned how adorable she is?

Amelia said...

Just curious if you ever got a primary nurse for your beautiful baby. I hope things are going well.