Now I don't really know what to fool myself with to get through March. Because I have no idea when this little drama nugget is going to come home, but it sure doesn't feel like it's going to be any time soon.
Breathe normally? No, thanks. But I appreciate the offer. |
You expect me to come home in this crap weather? Winter blows a fatty. I think I'll wait for spring. |
But now, we are in this cul-de-sac of breathing drama that just seems endless. The past few days, her sats are still OK, but she's working harder to get them there by breathing super fast. I'm sitting in the NICU right now, watching her head bob up and down as she works for every breath.
I just told the nurses this morning: if she's here in June, they are going to have to get me an adult-sized isolette.
You'd breathe fast too if your mom was asking nurses for adult-sized isolettes. Or if someone shaved random spots on your head in order to poke you with needles. Get off my tiny back. |
If you didn't know what happened, you'd think that I was sitting at home for the past three months stuffing my face full of Taco Bell and getting fat and slovenly while watching sophisticated television. (Keeping Up With The Kardashians?) Which, honestly, isn't far off, sadly, and also I don't really care if the meat in a beef supreme chalupa isn't really beef because that shit tastes good. I may not get to bring two babies home, but I do look like I'm having two food babies. **
I brought her some of her own clothes. Looking fah-bulous, dahling. |
But last week, we were moved to the intensive side for staffing reasons. And also for a much-appreciated reminder of just how far Ainsley has come. I almost forget sometimes.
While I was there, a mom fresh from the delivery room came in to see her baby. You're technically not supposed to know things about the other babies, but it's impossible since you're sardined in the room together. As soon as her husband wheeled her in she started sobbing. I'm not a hugger, but I've never wanted to hug someone so much in my whole life. Because GOD if it isn't fucking hard having a baby in the NICU. Unless it's happened to you, you just don't understand at all.
Well, she's the least dramatic baby in the intensive rooms. So there's that! |
It would be nice (or whatever) to have some information about what happened so that we can stop wondering.
* Sats...Oxygen saturation level. Should be mid-90's. If it drops below mid-80's-ish, it's called a desat. And desat = asshat. Sats tell us if she is getting enough oxygen/breathing effectively.
**You can really go thoroughly fuck yourself if you want to leave me a rude comment over me complaining about being fat. That's all I'm going to say about that.
--
One Year Ago: Panera's Wi-Fi Loss Prevention Owes Olivia
Two Years Ago: That's A Real Thing
Three Years Ago: Hey, It's Cheaper Than Therapy
58 comments:
Glad to read the update. I look forward to the "we're bringing her home" post!! You have a lovely strong sweet little fighter and I say a prayer for your family all the time.
Its good to hear she is not the most drama in the NICU, and about you saying you are fat, i know if i was in your position i would say the same thing, i think it shows you are more bothered about your little one than being self centred, i just have to say she looks so much like her older sister, so pretty. xxx
You are so strong. I am sure that Ainsley gets that from you! She is precious, and I can't wait for you to bring her home!! Being the Drama Queen that she is, it shouldn't really come as a surprise that she isn't ready yet though. She will get there!
I love your sense of humor. Although I can't imagine how much you've been through, I can relate to the weight. I always used to think that if you spent so much time being pregnant, all of the work of birthing, and so much work when the babies are new, the least that God could do is make sure you went back to your old bangin' bod!
Keep staying strong- you're excellent inspiration to all new mommies!
I can't recall if I've commented before, but I can relate more than I care to admit. My sons were born at 26w3d, and we lost Hunter's identical twin on day 4. Their due date was Feb 25th.. and were weren't home until Day 119.. near the end of March.
By that time, I was so OVER the entire experience. I didn't feel like a 'real' mom. No one else truly understood.
But please know that if no one else in your real life can commiserate, many of us in WWW land can. *hugs* She'll be home.. I promise. When they say it's all of a sudden, they're not kidding.
I complained about weight too after I lost Charlotte. No nasty comments from me!
I hope Ainsley makes it home soon.
Clearly she just likes all the attention she gets in the hospital and knows that when she's at home she has to share you guys with her big sister ;)
ps: I'm pretty sure you've earned the right to complain about anything you damn well please.
You amaze me with your strength (even if you don't have have it), your sense of humor (even if the worse times) and your endless devotion to your sweet babies (all three of them). You are awesome, and that's all I have to say about that.
Delurking to tell you that you look wonderful and thank you for the updates. I know posting here is probably low on the totem poll of things to do, but it's appreciated. I'll kick whoever in the shin that leaves a crap comment.
By the way - next time, give her a hug. I bet she'd appreciate it :)
I think she'll be home soon. Our girls dealt with the fast breathing too and I hated the waiting game. They came home at 5 lbs 2 and 5 lbs 4 after 48 days in the NICU and were still a little fast with breathing then but within a normal range. I'm glad to see she's off the oxygen though. One of ours came home for two months on it....that was the pits! You are such a strong woman! To be surviving through it & still managing to make us all laugh with your witty posts! Keep you chin up girl! You'll have your two girls under one roof soon! Also praying for answers about Evelyn as well!
You look wonderful...don't worry about the weight, really. I hope I wake up fat like you someday, LOL! My baby is 17 months old, and I look like I'm having food quintuplets.
You're right, most of us don't understand the NICU angst. It sounds truly awful, and I'm sorry you've been through all that you have. Ainsley looks like an entirely different baby now..she looks wonderful. Hopefully she'll continue to get better and better, and you'll get some answers about sweet Evelyn.
What a beautiful baby - I just love that first picture. I suspect she is just waiting for better weather before she starts behaving with the breathing. I'm sorry this has dragged on so long - sorry you have to go back to work - and so, so sorry that you don't yet have answers about Evelyn.
Unless you've been there, you can't understand ...so true. I can't pretend to understand all you've been through, but I did spend 8 weeks in the Nicu. I know hard each day is waiting for the word to come home. But it will come, and she will be strong and healthy when it does! Praying for your family!
If I'd been through what you've been through, I would have already eaten enough Taco Bell to end up one of those people that has to be cut out of their home. Except stuck at the NICU with my baby. Because that's how I cope.
So happy to read the update. Think of you often. I hope you get some progress, both with the autopsy and with Ainsley's health, very soon.
i laughed out loud at sweet ainsley's pics and your captions... she is BEAUTIFUL!!! and i DO know the torture that is the nicu. we are waiting for our girls to come home too- they have been in the nicu for eleven weeks; our due date is 3/22 and we are hoping that will be when they come home. sigh. but alas, they feel as though eating isn't important. after all, they do have their magical ng tubes. love and light to you all :-)
I hate that you can't bring Ainsley home yet :(. Csan't imagine how tough that is.
On a brighter note, your sense of humor is awesome. Hilarious captions. You make me laugh!
Thank you for the update. I check your site everyday to check in on you and your girls. Not much of a commenter but just wanted to say something to show my support. I really hope you'll get her home soon.
"**You can really go thoroughly fuck yourself if you want to leave me a rude comment over me complaining about being fat."
Ha ha I love you Jen :)
and I lol'd at the chalupas. Maybe you should ask them if they would prefer Chipotle...since its organic and not "mystery meat". I hear doctors like that.
she's beautiful
I don't give a shit if you complain about your weight while eating a truck load of freaking chalupas!
Do you need me to knit you an adult sized hat? (btw your hair looks WAY better than mine)
I am usually a lurker too, but just wanted to send *hugs* and say I hope she gets to come home soon!! Eat a chalupa for me and a side of nachos for the baby!!
What a doll. She really is a pretty little thing.
And you look about 100x better than you think you do, I promise.
I don't think you look fat. And I also think your hair looks good. (Okay, I typed your hair looks food. Too much talk about Taco Bell, I love Taco Bell.)
I hope you get to bring Ainsley home soon.
I am so very sorry for all that you've been going through...
But both of you look absolutely GREAT!
I hope Ainsley gets to get some hugs from her big sister at home, soon.
Much love to you all.
Chalupas would really halp, wouldn't they? Unfortunately, you'd have to wait for her to get some teeth first, and that takes entirely too long. Sigh. Keep growing, Ainsley! Your mama wants you home! (Daddy and big sister too)
WTF on the autopsy report? I'd be releasing all my stress on the pathologist by now. Hope you can find out something soon.
What a little dolly :) She looks like you!
So I just started reading... And then I kept reading... Ten pages worth actually. And I have to say I admire you immensely. (Even if you don't support my pigtail decision. I'm growing my hair out to donate it* and braids are a good way to contain the new masses. Don't judge me.) I don't really have anything comforting to say, because like you said, I haven't been there. But I think you're brave and hilarious, so therefore your some sort of blogging hero.
I also have to thank you for re-introducing me to hyperpole and a half, because the first time somebody showed me I forgot about it, but it really is quite amazing. Not as amazing as you though, because you posted a picture of your daughter in a cupcake costume which might be the most amazing costume I've ever seen.
But I feel like this is getting awkwardly long... So uhmmm, thanks for posting..? [this is me sending lots of non-creepy, co-blogging, internet love]
-Lela
*lies, I started growing it out for the wedding and now it would be too sad to cut it.
Ainsley is so cute! I love her little lips in that first pic.
Delurking to say that I've been on that NICU right. It sucks balls. And then suddenly everything seems to right itself and they come home. She will come home and it will suck until she does, and even afterwards you'll wonder what the fuck happened for the last 1,2,3 months. But it will get better.
And that doesn't make the waiting suck any less either.
(I had to go back to work too. I am sorry.)
Gawd I'm sorry. About the NICU, going back to work, esp with a babe still in the hospital, everything.
I lost my first boy - I had endless conversations with random work people/vendors after I returned to work who would cheerfully ask me about my baby, knowing I'd been on maternity leave. If I could make a suggestion? You need someone to 'clear the path' for you. In a couple other situations, our VP sent out emails saying "something bad happened, our empl has lots of friends/family/support, and doesn't wish to discuss it at the office". Because for some reason the most RANDOM people will be overcome with that urge to hug you which - for me at least - would leave me in a puddle of tears, even as I was trying to duck out of their arms. And ruin what had been a blissful 5 minutes of thinking about something else. Older women in the bathroom? Were the worst.
PS. The nurse asking about baby B? Did I misunderstand that?
Your daughter is so beautiful, and I can't wait to hear she is big enough to go home! You look great. I hope work goes smoothly and that you are all able to be home together as a family soon. Hang in there!
Some things:
-I think you look fantastic in that picture
-ainsley is beautiful
-you are super brave for being able to write about all of this
-I love your blog and will be sending prayers and encouraging thoughts your way!
I'm the one that wrote you the email about a month ago (you know, because I'm sure you ONLY ever get 1 at a time, right?!?) But, ya. I just wanted to let you know I've been following your blog, and am totally rooting for your family, and your little peanut! I think she's so precious, and clearly, opinionated! LOL I know it's hard to leave your baby somewhere and go home, it can tend to feel like they almost don't belong to you cause you don't get to do the mommy thing in it's entirety with all the tubing & machines they are hooked up to. It really will be just a memory some day (all this hospital time), when you're at home with her, and your biggest concern is which bow to put on her head! Also, your heart will never forget your baby Evelyn, but it will not always hurt so much as it does at first. I am just praying they don't make you wait too long to give you the results of the autopsy-- you need closure, and more than someone who lost a parent or grandparent does... get on it, people!!!
Anyway, I thought you looked pretty much like you had never had any children in those pics you posted (well, except for the fact that you were sitting there HOLDING your baby, but otherwise, you know, you don't look post-partum to me )... mostly because I still look like I had my twins and then ate them, and they are almost 8 months old, and you look so much better than I do at this point! :)
You're awesome, and I'm praying for you! Keep us posted on your sweet family, I can't wait to see you bring your baby home! She's just lovely! God Bless!
Thinking of you.
you really are amazing and so strong. God bless you and your family. I can't believe how funny you are, even at a time like this! get off my tiny back and adult sized hat had me in tears of happiness. thank you for continuing to blog and making the rest of us so happy to read about you and your life. hope your little baby is home soon!
Three years on, I'm still working on the weight. So yeah, fuck 'em.
Hoping your adorable little attention hog can go home very very soon. So many people are sending good vibes your way.
Forget the burritos. Give Ainsley some Hot Dog Shoppe cheddar chili fries and a malt--she'll hit size 3 diapers in no time. :)
Oh, she is just so Beautiful!! She still is very little although she certainly has grown, hasn't she?
Here's hoping march fares better.
Hang in there. Keep writing! Your daughter and you are beautiful. Chalupas are awesome. Perhaps she can have one for her first birthday!
First of all, love your blog and love you! I've been following your blog for awhile. Although we went through nothing like you have been through, our daughter was in the NICU for several weeks after she was born and we waited it out due to breathing issues. They thought she was having seizures and her oxygenation levels consistently were dropping and "desatting" over and over again. The dinging on the monitor was enough to drive me crazy. Even after we were discharged and she went home on oxygen I had nightmares with that dumb dinging noise in my head! My heart goes out to you. I love that you can continue to have such a great sense of humor through all of this. You're awesome and if I could've read these while I was in the NICU you would've made my stay so much better. I really could've used a good laugh back then. Keep doing what you're doing and staying strong for that little one!
I freaking love your blog and everything you write in it. Love it- you're hilarious. Thanks for the updates!
I really love your sense of humor. And I admire your strength. Taco Bell is great, I have never gone there and thought I was getting good quality food, that's the key.
when you referred to your two food babies, i totally thought you were talking about your boobs. you know... cause there are 2 of them... and they are full of baby food...
it made more sense in my head. and i laughed really hard. and was like, "oh Jen, you're such a card!"
also... your hair TOTALLY doesn't look bad in that photo. it actually looks nice! so there's that...
xoxo to your girls.
She is such a cutie and hugs to you both!
*hugz*
As a seasoned NICU veteran (my son was there for 117 long days) I can feel your pain.
My son went from being intubated for 3 weeks, to CPAP for a week, then back to being intubated for another week, back to CPAP for a month before finally graduating to nasal cannula.
Just when you think you've scaled the mountain you crest to see four more in front of you. It's a never ending battle, but know that she WILL come home and when she does you will enjoy every freaking second of it! ((((HUGS))))
P.S. You're totally right about the not getting it thing. Unless you've been there you have no idea. A bunch of us from The Bump started a spin-off preemie website. You should check it out:
www.thepreemiepalace.com
Hoping your baby girl comes home soon. And I am really digging on your closing to this post! AMEN!
Hang in there!
You are bringing back all my painful memories of the NICU. The waiting, the watching of the monitors, the getting so frustrated when there was an apnea episode and watching the moms being wheeled in after just giving birth. It was definitely SO hard and SO painful. My time wasn't as long as yours, only about a month total but it feels like forever when you are in the middle of it.
Just save that little hat! My NICU babies turn 2 in April and I look at those hats in disbelief. One day you will do the same!
Grow and breathe, little Ainsley, grow and breathe. I can't even imagine how hard this all is for you and your family, Jen. I pray often for your sweet girls.
Praying for your family (especially Ainsley) daily! Just wanted to say that it's crazy how much Ainsley looks like Olivia! You guys make beautiful girls :)
I know what you mean about being a NICU momma, you just don't know what's it like until you are there. She is doing great! I always tried to ask questions and they just didn't want to give me a good answer.
I've been thinking about you, I am having my itty bitty, send your itty bitty some itty bitty growing vibezzz!
Just wanted to tell you that my little boy, a 32 weeker, now 14 months, was playing with my iPad today. Somehow he pulled up your blog and made the pic of Ainsley in her little outfit fullscreen. He was giving it big open mouth kisses and saying bay-BEE, bay-BEE. So, apparently she's already got a little admirer over here. And why shouldn't she? She's adorable.
Hope your able to bring her home and have your family all in one place REAL soon.
She precious! Sounds like a fighter to me! :)
Yesterday was our 3-month anniversary in the NICU -- me, my wife, and our twin boys who were born at 28 weeks. Hot Sauce came home the day before his due date, but The Juice had to stay a couple of weeks longer due to lung silliness.
It might be hard to see it, but any day now you'll be sitting there with Ainsley and it will dawn on you that she somehow turned a corner overnight. A couple weeks ago our boy was still desatting like a mo-fo. Now he might dip into the 80s for a few seconds if he's having a real serious poop. And they're sending him home tomorrow.
How are Ainsley's hematocrits? When The Juice was really struggling to keep his sats up, he was often tachypnic and did lots of periodic breathing. One of the nurses commented that his crits had dipped into the 20's, and that anemia couldn't be helping. I don't think the doc was going to do anything about it (high 20's is low-but-not-that-low) but we opened the discussion and she decided to start a course of Epogen. Not even a week later, his crits were up into the low 30's and he was breathing much better.
Hang in there. One of these days you'll be walking out of the NICU with your girl in your arms and a big smile on your face.
I've had 2 babies in NICU and it blows!! I feel for you. It's stressful, depressing and the hospital is not a fun place to hang out in. Keep charging along. Your sweet baby needs you. I hope you're home VERY soon!!
Just stumbled upon your blog tonight. I'm on Day 171 today with at least two more months to go. It sucks, indeed. I keep telling myself that every day in the NICU is one day closer to home. Stay strong, and don't let yourself get hung up on dates. You're on her time now, and you'll be home when she's ready.
I check often for updates on your littlest lady. Hoping things are going well. All my positive thoughts are going your way...keep keeping on.
We had one stillborn twin and it amazed me how often someone who rotated into the NICU rather than those who were there regularly just assumed A was at home. I sometimes wondered if they should come up with an obvious marking system that someone was dead other than my son's name sign not displaying the B that was all over his chart.
Worst comment I ever got was from a tech with the perinotologist who told us it would have been better if our son was the dead one instead of our daughter.
Post a Comment