Wednesday, January 26, 2011

This NICU Business is exhausting.

Bah.

I got all smug with my good little itty bitty baybee updates - which you pretty much know nothing about since I suck at blogging - but it turns out that the smallest bump in the road is like a giant crater when I'm constantly operating at the brink of Mah Shit: About to be Lost.

Today I lost my damned mind (again) while visiting Ainsley and so I've felt like crap all day and have been completely unable to rally from the horror that is Mah Ugly Cryface.  Ainsley had to go back on oxygen, and then back on vapotherm (which is like CPAP, for people who know about such things).  And the realization that she was on vapotherm shook me up.  I saw the machine and recognized it from her first few days in the NICU.  Then they came to round on her about 10 minutes later, and AS ALWAYS they dodged all my questions and gave me their canned answers of "she's just little, we'll have to wait and see," and "you can't take her home until her due date."

No shit I can't take her home.  She's smaller than a kitten and can't breathe and is so skinny she has no butt cheeks.  But thanks for treating me like an idiot when I try to ask you questions!  Good thing the nurse is here to be awesome and comforting after you leave!  I'm sure my crying spell makes you think I'm not just an idiot, but also a crazy asshole idiot.  I mean it could be worse...I could be a crazy asshole white trash idiot, which seems to be pretty common around here if we're being quite honest.

Hey! Here's a picture!


Ainsley to Me: What's the big deal, drama queen?  I'll breathe when I damn well feel like it.
Me to Ainsley: You should just be glad that I don't use double negatives.  You'll appreciate that some day.
 Generally, the NICU isn't as awful as I anticipated.  Mostly because Ainsley usually does so well that it just seems like a waiting game.  Which I can handle.   But today?  Today I feel like I just...can't.  I left after two hours because I just couldn't get myself together. 

The 40 minute drive (one way!); the lack of sleep; the ridiculous guilt I feel over leaving Olivia every day;  the entire life that somehow keeps demanding my attention even though I have a baby in the NICU; the baby that we lost...all of it.  All this worry.  It's just exhausting to me today.

Tomorrow has to be better.

--

One Year Ago:  Formula Question
Two Years Ago:  How Should My Tombstone Read?
Three Years Ago:  Babies Bawl at Benihana

76 comments:

Tiffany said...

You amaze me, in all the best ways.

Denise said...

Totally understandable with all you have been and are going through. Here's hoping tomorrow is a better day for you.

Laura said...

i want to cry for you. and i'm sitting here with tears in my eyes. but you are awesome. you can do this. one of my favorite quotes that keeps me going some days is: "the world won't come to an end today because it's already tomorrow in Australia". Thinking of you, as always.

Superstar said...

That you open your eyes every single morning is a testament to your will. You're allowed to be tired. You're allowed to be done. D-O-N-E done. Olivia will probably not remember this little blip in her world. You just keep plugging forward because it is what has to be done. We women are awesome like that.

And for what it is worth, the word verification is anspezz. Like Ainsley's pez. I'd buy an Ainsley pez dispenser.

2011meansgratitude said...

The fact that you made it this long without losing your shit makes you a better/stronger woman than I, my friend.

It will turn around. It will all get better. Only place to go is up...

until then, *hugs*

lparsons15 said...

Couldn't be more understandable... You are so strong!

Esperanza said...

I so, so, so, so hope it is. You are amazing, even when you're seeing your cry-face looking back at you.

areyoukiddingme said...

Tomorrow has to be better...

What's wrong with doctors anyway? Surely they can tell you something useful.

Clair said...

All that trauma you have been through recently and hormones that haven't gone back to normal yet - cut yourself some slack!

And that is the most delicious little baby!!

Ashley said...

I feel for you in the deepest ways. I had twins at 25 weeks 5 days and we went through a very long rollercoaster in the NICU. The boys are now 8 months old and they are doing great! Hang in there and try to remember that everyday will be better. Sometimes two steps forward, one back... sometimes one step forward, two back. But everyday she makes it she is another day older, stronger, and closer to coming home. Check us out if you need encouragement and read through my old posts. www.dreamscomingtrue-calebashley.blogspot.com
God Bless!!

stephanie said...

I just want to hug you in a non-creepy way. You are INCREDIBLE and though you feel anything but, are handling this with insane amounts of grace.

And Ainsley? OMG with the cute.

Mrs. Higrens said...

Thank God for awesome NICU nurses.

They are the ones who know your baby and do their best to keep the shit from hitting the fan, both for your little one and for you.

Ainsley is adorable and a trooper, just like her mom!

Megan said...

Not sure if I've commented before, but I've been reading since your Redbook blogging days. Thinking of you guys all the time and hoping for little Ainsley's progress. Stay strong, Jen.

Erin said...

You are allowed bad days!! A bunch of them! In fact, if you just want to lose your shit for next 60 days or whatev, really, go ahead. But please rest and take care of yourself. I hate to see you be so hard on yourself.

katherine said...

I wish I could say something that would make you feel better. But I've heard from so many that the NICU is such an emotional roller-coaster, that it's two steps forward and one step back; that it's enough to drive even Buddha himself crazy. The fact that you're in there, dealing, after all the you've been through -- and with all you're currently going through -- that's nothing short of amazing.

I hope there are lots of people there taking care of you. You don't have to be strong for anyone else, mama. If at all possible, please let others take over and deal with the other shit so that you can just snuggle with your daughters. That in and of itself is a huge accomplishment. I would have trouble just getting out of bed, if I were you...

Sending you much love and many get strong wishes to your perfect, feisty little doll...

Micha said...

I have no words, only *hugs*, and I am sorry that that is the best I can do!

Sara said...

My 24 weeker spent 4 long months in the NICU so I can sympathize with you. It just plain sucks. I promise things do get better though!

My son did ventilator, CPAP, nasal cannula, CPAP and nasal cannula again before discharge. It's true when they say one step forward and two steps back, the NICU is a rollercoaster, blah, blah, blah. Again...it just plain sucks.

Hang in there! We're pulling for you and keeping you in our prayers!

jaysaint said...

I'm so sorry. I'm thinking of you and hoping for better days.

Kate said...

I'm sorry for your troubles. I hope so much for you that easier days are ahead.

Stace said...

Evelyn & Ainsley and her time in the NICU keeps me thinking bak to Connor & Colby and his time in the NICU. I know they're two totally different situations, but so similar in some ways. It was so hard in the beginning- or, really, the whole time. But the hardest that first month or so when I was still figuring things out. Those mornings of going in and seeing the step back or hearing report that "Oh, we had to bag him last night... but don't worry" were so hard.

All I can say is that it does get "better". Never okay, but better. And in the end, Colby came home a healthy crazy baby with his very own guardian angel. A small comfort- but something that still makes me smile. And Ainsley, too, has her own angel. Though it's still not fair or right.

I don't usually say it, but *hugs*.

EB said...

The NICU experience is crap. Only with more beeping. Hang in there. Like Ainsley, you'll have good days & bad days. Be kind to yourself. You're doing great.

Jill said...

You are doing wonderful!

And Ainsley looks absolutely perfect. :)

Bekah said...

It sounds exhausting and overwhelming. I'm sorry it's so hard. I can't know how you feel, but I hope that you can keep your head above water.

Also, it's totally alright to cry when your afraid for your child. That is an okay time to lose your shit. Just sayin'.

Amanda said...

You are so strong! You are doing so great. I'm sorry about the set back, but hopefully Ainsley will be kicking ass tomorrow.

Greta said...

I really, really hope tomorrow is better.
Ainsley is beautiful...seriously precious.

Noelle said...

My baby didn't have butt cheeks either. And it totally scared me. They will grow in. I promise.

I'm so sorry. It is a roller coaster and it's scary and awful. And on top of that you are dealing with loss. I can't imagine that.

You will get through this.

Kristina said...

I'm so sorry today was a rough day. After all that you've been through, it's totally understandable but you're doing a great job handling it all. I can't even imagine. I hope tomorrow is a better day for you. Thinking of you.

Courtney said...

Tomorrow will be better! Ainsley is just taking a break from breathing on her own to use that energy to grow some butt cheeks ;)

Chris and Annalisa said...

I'm so sorry, I hope things get better in the NICU. I've discovered in my short existence here on earth, that not all nurses are created equal. Some just plain suck. And when you find a good one, you hang onto her for dear life! I hope you find a good one soon.

Hugs.

JM said...

Good luck with the NICU nurses... Ainsley is so beautiful, and soon enough you'll have her home where she belongs!

Michelle said...

Wow, she is so lovely. And I see some cheek chub, so she must be growing even if she is still tiny.

Hang in there - we're all thinking about you and Ainsley.

Nic said...

I'm sorry things are so shit. Give yourself some credit, you are doing great, doubt I would ever hold it together.
I hope she hurries up and grows some butt cheeks!
X

hairyfarmerfamily said...

I'm so, so sorry, lovey. I understand a little of how hard thi is, although I had neither an older child or a lost child to add to my NICU woes - and you have both. On the bright side, I very, very much doubt you're coming across as a crazy asshole white trash idiot, but your exhaustion and stress absolutely entitles you to try a convincing impression of one if you like. And Ainsley, despite breathing hiccups - all the best babies have 'em - is doing wonderfully well.

Heather said...

((hug))

PJ said...

I blame about 80 percent of my postpartum cryface (anger, frustration, anxiety)on hormones. The other 20 percent on lack of sleep, an overbearing mother in law, and recovering from my c-section-which incidentally turned into an infection).

I think our girls were in the nursery for two weeks, and it was HARD. And they were 4 and 6 pounds at birth. We went twice a day to nurse, cuddle, visit.

Some of the nurses were great and made me feel good. Some of them were complete bitches. The 5,000 lactation specialists that tried to force my asshole breasts to cooperate help me were the same.

And I think the canned answers have something to do with covering thier asses, so that they don't overshare. So frustrating.

When Addison had to go BACK into the isolette after being out for several days - I cried something tremendous.

I'm sorry, probably too much info... your post just brought back a lot of memories. It does get better. I guess I just want to say, it's hard. I hear ya.

Hugs

raisingmiles said...

You are a rockstar.

MagaliesGarden said...

Never met you, but sending you a hug. Nobody stretched so thin could handle it better than you, even on your worst day. Your girls are so blessed to have you as their Mama. Praying for relief to come, even a little at a time.
XOXO
Heather

Sarah S said...

You are doing so well!!! I have no experience with the NICU but I have friend who do and it can be a tough road.

Lots of hugs for your family!!!

clearness said...

This makes me wish we lived close to one another so I could go kangaroo the little kitten. Would they let me since I only follow your blog and am not a relative?

Lots of strong prayers for your growing girl.

Beth said...

I wish I lived near you. I would come to your house, force you into the shower and down for a nap (at gunpoint if necessary), cook some food, clean your house, do your laundry, play with your daughter, and drive you to the NICU so you could catch 40 more minutes of sleep in the back seat.

You need some sleep, some help and for somebody to tell you that everything is going to be okay.

Because it is. I just know it.

lori said...

you are an AWESOME mommy. you are under an unimaginable amount of pain and stress, and yet you are handling it with grace and humor. i'm sure it doesn't feel like that when you're thinkin' about the cry face, but really, in the scheme of things...what's a little cry face?

ainsley is absolutely beautiful...she even makes those nasal prongs look good.

hang in there.

Kathleen said...

I've got you in my thoughts. Be good to yourself.

Kelly said...

Hang in there Jen, you are doing great. You are a wonderful mommy, even on your off days.

Jennie said...

I'm thinking of you and pulling for you and Ainsley.

And even if she ends up being a complete ingrate, I, for one, appreciate your avoidance of double-negatives.

I hope tomorrow is a better day. I'm sending you lots of hugs and happy thoughts.

Leah said...

Thinking of you. It's okay to feel tired and done. You just keep doing what needs to be done everyday and that shows your true strength.

Stephanie said...

Continuing to hope that tomorrow and every tomorrow after that are better than the one before.

And I wouldn't worry (although I know it's inevitable) about Olivia. Little kids are resilient and amazingly able to adapt to changes (at least in my opinion). And as someone else said, it will only be a blip on her radar.

MehrySondy said...

I just got to take my baby home from the NICU on Monday. I know how hard it is and my heart hurts for you. I hope this time passes quickly and you get to bring your precious baby girl home soon.

Shannon said...

You are a strong, wonderful mother. Hang in there!!

mrsyak said...

Hugs.

Tasha said...

Huge hugs, and I reccomend reading Half Baked: The Story of My Nerves, My Newborn, and How We Both Learned to Breathe.

lis said...

shes just beautiful, Jen. and i love that looking at her means looking at Evelyn too.
sending some strength, chocolate, and a limitless credit card to get you through.
xoxo
lis

Mel said...

It does get better. I'm sure you've heard all the sayings about the nicu and they are true, as sick of hearing them as you get. Or at least I did. But hearing that doesn't make it any better so I'll just say I'm sorry you had such a bad one. All in all, Ainsley sounds very impressive!

We had a similar situation with my son (a 31 weeker). He was on the ventilator for 5 days, then the nasal canula for 2 weeks. It took so long to wean him off, then after about a week breathing room air and doing great he started struggling. I was there and holding him at the time and very much wanted them to help him breathe. Watching that is heart wrenching. He was back on the highest setting and they had to go back to the feeding tube as well. It felt like we lost all the progress he'd made over the last 2 weeks. All those little victories were for nothing. HOWEVER, it only took a few days to wean him off that time and then he made progress with his eating very quickly and came home about a week later. He just needed a little help for a few days that's all. He's now 13 months and as cute and smart and perfect as can be. It WILL get better.

You probably didn't need to know all that, but maybe it helps. Just a little? I can't imagine having an older child during that time and certainly can't imagine having lost one. You are amazingly strong to make it there every day. And to still be funny. You're my hero.

Faithful Infertile said...

Hang in, there. If you weren't on the verge of a melt down, there would be something wrong with you. Look at everything you have to deal with. But, if Ainsley continues to do well, she may be able to come home before her due gate. My 2lb 26 weeker came home 3 weeks before her due date, so miracles do happen.

NICU life is exhausting. We were 2 hours away from home, living in a 12X12 room at Ronald McDonald house. I remember thinking it was like the movie, "Groundhog Day". Living the same day over and over. Make sure you do whatever it is that you need to do to take care of yourself. Both of your girls need their mama.

We celebrated Marleigh and Natalie's 2nd birthday Sunday. It is still very hard. The hurt of losing a child never goes away. We took Marleigh to the cemetary to see her twin sister. She said, "Hi, Natawie" and was tracing the letters on her headstone. It was so innocent and sweet....

Sorry... not trying to make this about me, just want you to know that there are people that understand what you're going through, and that it will get better.

Sarah

Grade A said...

Hang in there, Jen--it sounds exhausting. Ainsley is so precious, thanks for the photo!! Thinking of you and sending you all the best.

Magsy

Kahla said...

One day you'll back on this and realize it was just a stepping stone in a bigger picture and you did awesome... even when it doesn't feel like it. Sending so many prayers and hugs y'alls way.

Mom of the Twinkies and Tot! said...

The NICU experience is so hard. There was one night that the girls kept desatting when we were kangarooing them & they made us put them back in their isolettes to rest. I knew that was what was best for the girls, but for me, the momma, it was not. I hated that someone else could tell me I couldn't hold my baby. Ainsley will have great days & days that don't quite make it to great. But one day this stage will be well in the past & you will be home with her and Olivia enjoying your precious girls, loving on them at the same time. That was another very hard thing for us & the NICU. When home with Tucker, we felt like we should be at the NICU. When at the NICU we felt like we should be home with Tucker. It was never a win/win situation. Thinking of you & remember when!

Blahnik to Birkis said...

i'd be worried if you didn't have days like this. but that face... it is a beautiful little face. she is so lucky to have you. ALL your girls are lucky to have you.

Debbie said...

LOSE your shit? I'm not sure I would have even found it by now! Clearly, you are a fabulous mom - take care of yourself - have a drink (or twelve) or ice cream.

Sarah said...

Girl, I'm sorry. I know this just simply sucks. I still get all antsy when I even think about those NICU days (my babes were born at 28 weeks). I had a 2 year old at home too, so I remember that guilt I felt. And I'm a pediatric nurse and they talked to me like I was a complete idiot as well and would give these blanket basic answers.
I'd like to say it will eventually be a distant memory, but you won't ever forget. You will just love your Ainsley that much more because of it...and you will amaze yourself at the strength you have during this time (even if you don't fell like you are strong).
Thinking of you!
Hugs,
Sarah

SmartAssMom said...

I can totally relate to the guilt you feel leaving your toddler to visit your baby in the NICU...and the guilt you feel leaving your baby to be with your toddler. It is TOUGH. I'm so sorry. Hang in there.

Erin said...

Sorry about the damn mind. I'm telling you, the NICU (etc, etc) has a way of doing that to a girl. Hang in there.

Ainsley is precious. And already hilarious in captions.

Allison said...

She is beautiful. And you're doing a better job keeping your shit together than I imagine I ever could. And forget about the blog if you need--we'll all be here when you come back. Still sending you many hugs and prayers.

andrea said...

Jenn, I am so deeply sorry for your loss and all you have been through. I wish I had something enlightening to offer. I don't but if you send me your address I can FedEx you some chocolate, spanx, and alcohol.

Kathryn said...

Jenn, delurking to say my deepest condolences for your loss, and some days will be better than others. I hope you can be easy on yourself, because this is a hard road.

Kathy W

Chris and Joy said...

What is up with all the white trash at the NICU? I thought is was just us apparently this is a nation wide phenomena. Just took my baby home this week and when they first told me I was going to take him home in the next couple days I lost my shit. And not in a yay my baby is coming home sort of way but in a holy shit my baby who still has no butt cheeks is being placed in my care sort of way. Everyone kept congratulating me until I ran out bawling. Crazy comes with the territory at the NICU.

Cheryl said...

Just yesterday, my baby Ben came to me and said, "Mom, I can't believe you stayed just two hours a day in the NICU. How could you leave me that way?" Oh, wait, no he didn't. He said "Cracker?" and pointed to a box of Reduced Fat Wheat Thins. So you see, there's no reason to ever feel guilty when you go home from the NICU. Even if you're going out to (gasp!) enjoy yourself. Ainsley isn't going to remember how long or short you were there, and believe it or not, neither with you.
Big hugs,
Cheryl from Redbook but now at Star xo

Another Julia said...

Ainsley is rocking that cannula! I'm sorry that you're both having such a hard time. You are totally allowed to lose your sh*t! I can't imagine that having a baby in the NICU (even a rock star baby) can be anything less than stressful. You are doing everything you can do to take care of your children. That's what great moms do, and that's what you are. Do your best to take care of yourself, too.
(((Hugs)))

Brooke said...

I'm sorry Jen. You have every right to feel the way you do. The NICU is exhausting and stressful and freaking HARD! I had a complete and total breakdown after one of my daughter's setbacks that ended in me sobbing "I can't take anymore!" in the middle of the NICU and earning me a visit from the social worker. It happens. Thinking of you and Ainsley.

Katie said...

(((HUGS))) I am so sorry that you have been through all this. I have only read a few posts. I am just reading your puffy posts about ankles and face. I have been there with severe preeclampsia. I remember a stupid doctor saying to me...you are going to lose 30lbs tomorrow you puffy marshmallow face! Stay strong mama, I will go back and read your blog more, its heart breaking.

Molly said...

Jen,
Sending good thoughts your way! I'm a NICU nurse at a large hospital. Obv I've never seen your little bit, but it's very common for them to come on and off oxygen support (vent, Cpap, NC, etc.). I know it's so hard but think of it as her working her muscles out. She is on support and it's making her bench press just a little bit so she stores up some good oxygen reserve and is strong enough ot come off. She is forced to use her own breathing muscles (literallyl her muscles in her chest, lungs, belly), she may get tired and have to go back on support, but in the time off, she's benchpressed quite a bit and gotten some good muscle training. Look for her to go longer and longer each time she is off of support! I know it doesnt feel that way, but she really is making progress going back and forth. As for the white trash.....oh sister, I could write a book.......

Steph said...

You have been thru a lot...the pregnancy, the loss, the birth, watching your sweet, itty, bitty baby in the NICU. It's a LOT. It WILL get better. I'm sure time feels like it's at a stand still, but it WILL get better. A friend had her second baby at 24 weeks, he was 12 inches and barely over a pound. He is 16 months old now. Every day is one day closer to Ainsley coming home. She's growing, she's getting stronger, she's a fighter! Take a deep, cleansing breath, have a cry if you need it, and know your baby will be home soon.

Christine said...

I cried every time our NICU drama king had a setback. It was the only time I cried. He'd do fabulously for 3-4 days straight and we'd start talking about car seat testing and moving from the isolete to the crib, and then he'd have an apnea relapse. He was just like Ainsley though, persistent and such an overacheiver. The nurses all loved him because he was awake more than he slept, constantly watching them. But rarely gave a fuss. Our love goes out to you each and every day...she's such an angel!

Typical Suburban Family said...

You are amazing. And Ainsley is adorable. Grow strong and big baby girl so you can get out of the NICU. I'm your newest GFC follower.

Jennifer said...

Keep ya chin up the best you can. Cry in the shower if you need to. And by all means... go buy some new shoes or something!

Jennifer said...

I so appreciate your honesty. :) You are so amazing to me... to share such a difficult journey with so many complete strangers is amazing!! You are giving me amazing perspective on life. And you make me laugh until I pee myself. Seriously.

I have a friend whose twins were born at nearly the exact same gestational age as yours, and just a week or two after yours. Her name is Jen (as is mine... freakin' Love Story movie). Anyway, my friend Jen is so exhausted by the NICU dance, and she too is struggling with the guilt of being away from her older two daughters, who are themselves quite young (13 months and 2 1/2). Reading your posts reminds me every day to pray for Jen and for all of the Jen's in the NICU's. I even pray for the white trashy peeps, because, well, God is ok with it, so who am I to argue, ya know?

Anyway, just wanted to say thank you for sharing your journey. You and your beautiful family are in my prayers.

Mom of 3 said...

You probably don't have time to read the comments, but by the off chance you do, you're not alone. I am also raising a surviving twin. My son died at 31 1/2 weeks and my daugther was bron at 33 weeks. I spent the last 5 weeks of my pregnancy on hospital bedrest. I had a 4 year old daughter at home. I felt like I was been drawn and quartered. It sucked, it still sucks, but it does get easier. My suriving twin will be 3 in May. Hang in there!