I Can Has Continuous Positive Airway Pressure?
Simone lasted 22 hours on CPAP. Surprisingly, she had only one apnea episode—this time she remembered to breathe, but simply couldn’t do it well enough to clear carbon dioxide and keep her wee alveoli from collapsing. It was too hard; she was too small and her chest muscles too underdeveloped. But by god she tried. Almost no apnea means that at no time did her brain decide to give up and lie quietly until someone brought it an intubation tray and maybe a chocolate truffle. This, in my opinion, is an impressive feat. It shows that Simone’s central nervous system is maturing, and that she did not inherit my lazy gene. If she had a blog, probably she would update every day instead of scrawling a few notes on the back of a Target receipt and telling herself she will get to it later.
On CPAP Simone had to either keep something in her mouth or have it held closed with a chin strap, in order to prevent all the air rushing into her nose from rushing right back out again via her gaping maw. She was delighted to have her old friend the pacifier back, and practically unhinged her jaw in her eagerness to gnaw on it. She is a big fan of sucking, my daughter: on her hands, her feeding tube, her breathing tube, stray IV ports, cheap Domican cigars—I have a video of her chomping away on her Soothie that would make an excellent LOL Preemie (I’m in ur isolette, masticatin’ ur plastik produkts!!!).
So Thursday evening, post-extubation, I was sitting on the couch in her room not-writing when I heard a baby crying far away. Poor little thing, I thought, typing my name a few times and then erasing it, hoping the crying infant would grow up to do something sensible and leave the thankless business of writing alone. I heard it again, a sad, quacking cry, like the cry of an underpaid English major.
And then I realized it was coming from my very own baby.
I had never heard her cry before. I had seen her cry, mind you, her mouth a screaming O, her face red and her limbs striking viciously at the offending nurse. But now that her airway was free she could make noise—hoarse, because of the just-removed tube, but noise all the same. I lifted her isolette cover to find her pacifier fallen from her mouth and an arm groping the blanket for her lost companion. I slid it back between her lips and returned to my computer, only to repeat the whole process a few minutes later (lost pacifier, crying baby, delighted mother-slave to the rescue). It was amazing, just as it must have been when silent film was replaced by the talkies.
So those are the good parts of the CPAP saga. Simone got an A for effort for her 22-hour stint of less-assisted breathing, and I got to hear her voice for the first time (not that I was whooping with delight at her tears, you understand). I wanted to tell you these things before I move on to the next bit, the bit where I thought Simone had died while I was having my hair done.
SPOILER ALERT:
She didn’t die. She is fine, or as fine as a very angry two-and-a-half pound infant can be. I, on the other hand, am too tired to finish writing this entry, which is why you must wait until tomorrow for the rest of the story.
For now, allow me to placate you with a picture of my baby in a funny hat:






56 Comments
Oh the voice of sweet Simone. Crying or not, I’m so glad you heard her. Thank you for the update and picture of the cutie pie with her hat. Still hoping and praying your posts come from the comfort of your home soon enough with Simone sleeping soundly nearby.
Two things:
1) Holy shit you scared me at first! I think my heart stopped beating for a second or two! Thank God she is fine!
2) I very distinctly remember the first time I heard the boys cry. It was the best sound I had ever heard. I am so glad you got to hear your Simone’s voice, even though she was crying.
Okay, three things. 3) I hope you are okay. I know you had to have lost at least ten years from your life during whatever happened with Simone. Add that to all of the stress you are under and…well, I hope that you are managing to take care of yourself the best you can under the circumstances.
PHEW! You know, I seriously stop breathing until I get to the end of your posts. So happy to know she’s still givin ‘em hell.
Just as my daughter asked how Simone is doing! a new post from you appears. We are so happy she is fine. And thank you so much for posting pictures. Your baby is so sweet, and we keep her in our thoughts all the time. We’re so glad to have a new picture.
Oh Alexa - what a delight to hear her voice. Yay for Simone and what a clever girl she is to go so long on Cpac. Hope you have a good rest and am waiting with baited breath for the rest of the story.
Jules
Alexa, I was introduced to your blog on the 13th March… On that day I spent the good part of 2 hrs glued to my laptop screen, and the better part of the last 4 days since your last post checking your site up to 8 times a day in anticipation of an update on Simone’s condition and to hear of how you are holding up.
I wanted to let you know that out here in the real world (i.e. outside of the NICU….I am in Sydney Australia) there are very few ground breaking events. I am currently sitting in my home office, gazing over a cityscape which is slightly blurred by smog.
My 6 year old has asked me no less than 5 times in the past 20 minutes if she can have something to eat - whilst gazing at the chocolates which are sitting on my desk…
My partner has called me 3 times since lunch to make sure that the meat is out of the freezer because he is entirely sure that at 25 weeks pregnant I can no longer be relied on to complete even the smallest of domestic deeds.
I have organised functions, media releases and property maintenance, whilst still managing to fit in a dental appointment, swimming lessons and 20 trips to the WC due to someone jumping on my bladder at 25 wks gestation.
All in all, I am doing what I wish for you to be doing in the near future! I have no doubt in my heart that Simone is a fighter, and I look forward to seeing her continuing progress as depicted by her mummy - an incredibly strong and courageous woman!
You do know how to keep a woman on the edge of her seat. Glad for the spoiler that things end in an alive fashion…..
Oh and great pic
J
My whole family is delighted to note that Simone has cheek fat!
She is utterly beautiful. Thanks for the update.
Oh, we love a feisty baby. Feisty is so, so good.
What a wonderful moment to hear her cry. And those cheeks are looking positively chubby. And thank you, thank you for the spoiler!
I can’t imagine what you must have felt hearing that first cry. It’s quite an amazing little girl you’ve got there.
Is it just me or does she look like the picture of you on your home page in this picture? (OK the hats are different - though I like both - and you don’t have white across your face)
What a clever and stylish girl that Simone is. So glad to hear she rocked the CPAP for 22 hours. Next on agenda: conquer world.
Seriously, my heart went thud. Don’t do that!
Good job, Simone, keep on breathing. Love the hat, dear, work it! (LOL Preemies, indeed.)
Thank you for the spoiler alert!
Wow, almost a whole day on the CPAP! You go with your bad self, Simone. Good job, baby girl.
Willing mother-slave. I love it.
Thanks for the spoiler…I don’t think I could have made it to the next entry without. Keep hanging on, you are amazing.
xxoo
so happy to read all of this. so very happy. i am already of the opinion that anyone in the whole wide universe who will never get the opportunity to meet Simone is one poor, sad, unlucky bastard.
Bloody good effort, young lady! Glad to hear that you are fattening up nicely; you’ve put on more weight than I’ve managed to loose this month!
Mother-slave?! Oh my, yes. There’ll be no manumission, either. Enjoy!
Good show little lady! Breathing can be such hard work!
We still have all of our little camera videos of Jeffrey squeaking out his little cries. I likened it to a kitten mewling. It’s so wonderful to hear that Yes! I can help you with something. Thanks for letting me know!
Thanks for the spoiler. It would have been too hard to go back to work without knowing she is angry and fighting. Get rest. As much as your able. She needs you to be strong for her but she won’t mind if you get some sleep. We’re praying for you.
WOW, 22 hours, fantastic!!
and hell, welcome to the world of infancy where MOST of your time is spent locating the lost paci.
Simone looks like a funny old man who likes to ski. But, of course, a really really cute funny old man. She’s beautiful!
A little like Ernest Borgnine perhaps?
What a fabulous present to finally hear her cry. Here’s hoping she’ll keep hitting these milestones in her two steps forward, one and a half steps back attitude right now. Go Simone, go!
I think she looks like you. Good girl, Simone.
Not a funny hat — a charming spring bonnet!
And she’ll be CPAPing in no time. But, you know, baby steps. Or resps, whatever.
You know we’re going always going to submit to your orders in exchange for photos, don’t you? It’s one time I don’t mind being played.
Sending my best wishes for Simone’s lungs and Alexa’s sanity. And very grateful for the spoiler.
I am just glad to hear about th wonderful progression for you and simone! Keep it up girls, Keep it up
Normally I hate spoilers. I never read flap copy of books I already know (through recommendations) that I want to read. I close my eyes and hum through previews of movies I already know (through recommendations) that I want to see. But I can honestly say, this is the happiest I’ve EVER been to read a spoiler! My jaw literally dropped just before that blessed line (and my jaw is not prone to dropping, let me tell you).
I do hope your hair looks fabulous, after all that.
Awww, that is so sweet that she just loves her pacifier. I’m glad you got to hear her voice!
And thanks for the spoiler - my heart stopped for a moment. I’m glad that she is doing well.
“I’m in ur isolette, masticatin’ ur plastik produkts!!!”
I nearly lost it when it read that. She’s so cheeky. Glad to hear she is well, and that you got your hair done. Even with the drama, I know how good it can feel to do something for you. Sometimes its hard, but its important.
Hello!
Go Simone!!! She looks lovely in her funny hat…
peace,
kath
Glad she is doing better…I love your updates…thanks for letting us know what is going on. Continuing to pray for all of you…Keep fighting Simone!!!! Sweet baby cries are so precicous!!!!!!
Good God, woman, don’t DO that!
Which is to say, I’m glad she’s OK. I can’t say “looking forward to reading the story,” because who looks forward to stories about babies in trouble? And also because I’ll read it with my hands over my eyes, peeking out from between two fingers.
But yes, I’ll be refreshing a lot, and thinking good thoughts for you.
Dude, she’s huge! And freaking adorable.
oh i’m so glad she’s screaming! that’s a really good thing, i’m sure.
Personally, I loved the spoiler alert. And a big cheer for semi-assisted breathing! And crying.
Just make sure those cheezy cigars are really Dominican and not, you know, made in China. Just sayin’. My god, the spunk! The sass! The g’damn, give me back my paci I’m working to stay alive over here and you’re surfing the web you worthless . . . Not so much looking forward to the next part, but thanks for the spoiler alert (sometimes I feel I might jinx things just by clicking over here). Here’s to more cryiing, screaming, peeing . . .
Happy to hear news of Simone’s adventures. And so glad to know that she is practicing her screaming…the girl knows what she wants and knows how to ask for it. Sounds like she might take after her mommy.
Our best to all of you!
Recently found your blog and thinking good thoughts all the time for your family. Your story about the pacifier reminded me of a Soothie product that helps hold the paci in. Maybe this will help?
http://www.soothie-pacifier.com/Penguin-Wubbanub-Soothie–hes-new-hes-cool-_p_0-110.html
God Bless!
I don’t know how you remain so good at writing in an amusing way with all that’s going on. But I admire the hell out of you. And, can I just say, God I wish I could get Sadie to suck a pacifier. Because eventually that cry gets under your skin in a big way.
So glad she’s doing well! And it sounds like you’re holding up as well.
You scared the hell out of me too! What an amazing writer and mom you are. Glad you got to hear Simone’s voice. She is one kick ass baby!
Keep up the great work, both of you!
Bless you for the spoiler, Alexa! I couldn’t have gone back to my boring old government work without it! Glad to hear that our Simone is on the (war!)path.:):):) I am praying for her and for your family.
OK, I picked up on the verb tense in the pre-spoiler alert sentence (and I’m not even an English major), but, yikes. I’m with Newt.
I’m glad Simone did so well with her less-assisted breathing and that you haven’t, actually, died from the stress as I would have at this point — never being able to write so fluently.
I hope all will go well from here on out, as I always do, and I respect all of you for the strength you continue to exhibit even when it doesn’t.
Oh my.. so many memories that you bring back for me. I remember hearing my oldest two cry for the first time after they were taken off of the vents. My, what an emotional moment that was.
STill thinking of you guys and pulling for your little girl!
This might be the first time you’ve heard her voice, but it’s not the last time… and putting a soother in will be the easiest request of them all to come. Your humour in all of this is such an emblem of deep strength and resolve - enough to get you all through it. I read once that humour only works when you make fun OUT of the situation (and care enough to get the nuances right) not OF the situation. You both have stunningly beautiful voices - one in the air, the other on this page. Keep breathing — both of you.
Okay, I was a chemistry major, and some of the subtleties that English majors comprehend innately elude me. What does I Can Has Continuous Positive Airway Pressure? mean?
There is a hilarious website called icanhascheezburger.com. It features funny pictures of animals (mostly cats) with funny captions that readers can edit/submit. There’s also a related site featuring only cats with similar captions called lolcats.com.
The captions are all written in the same style, with a few continuing themes. Wow, this is a lot harder to describe than I thought it would be.
Anyway, some of the recurring themes include the animals asking if they can have cheeseburgers, a walrus looking for his bucket (”mah bucket”), animals asking for something and then saying, “Okay, thanks bye” (I can haz cheezburger? kthxbai!), God appearing in the form of a cat peering down from a ceiling tile (Ceiling Cat), and animals getting stuck in things and saying stuff like “I’m in ur fishtank, looking for mah lunch.”
Our flotsamblogger here made a couple of icanhascheezburger jokes in the entry, including the title you asked about and (I’m in ur isolette, masticatin’ ur plastik produkts!!!).
Hope that helps!
she found her voice. and knows her mind.
she is fabulous. thanks for the spoiler.
Thank you, now, back to Target, sleep or your sweet Simone.
Oh what a precious baby! And she’s growing…..2 1/2 pounds, that is SO great! How lovely to have heard her voice for the first time. Soon, you’ll hear it often - when she’s wet, mad, sad, frustrated, hurt, bored, hungry. What a joy that will be!
I have no idea what you are going through - my one and only was born full term, 33 years ago. I’m glad I found your website and have been continuing my prayers for Simone and your family. Thank you for these updates. She is absolutely the most beautiful baby girl in that NICU!
UNFAIR!!! leaving us all hanging like that! :P
Okay, so now I’m completely nauseous, my stomach having bounced up under my collarbones and back down to my navel upon seeing the word “died” a line or two ahead in my reading. Thank God you posted that photo — clearly, that rosy, chubby, pissed-off looking baby isn’t going anywhere except home, hopefully in the not-too-distant future!
I am so proud of her…for carrying off that yellow-white cap!
You heard her cry! ♥
THANK GOD she is okay. You must have been terrified. And I don’t even know the story yet.
The LOL Preemie … you’re freaking hilarious. How do you do that?
Genius child! Genius mother!!!
I can’t WAIT to read Simone’s blog when she’s older! If her mom writes this well off of the back of Target receipts, just imagine what she’ll do!