Apr
17
Just When You Thought it Was Safe to Buy Crib Sheets.
(7 spells of severe apnea) + (1 manual bagging) + (1 return from minimal O2 to High Flow) + (1 failed bladder tap) + (1 catheterization) + (1 blown IV) + (1 successful IV) + (1 blood culture) + (1 elevated CRP) + (1 dive off the preemie growth chart) + (2 mentions of “tracheostomy”) + (1 mention of “bronchoscopy”) + (1 mention of “g-tube”) + (1 dose of morphine) + (1 blue baby) + (3 doses of Narcan) + {1 oxygen tube accidentally disconnected during spinal prep and unnoticed until + (>toomany deep desaturations + >toomany minutes) later} + (1 lumbar puncture) = Thursday.
Morning.
111 Comments
Holy god. Someone get this woman a strong drink.
C’mon little Simone! Don’t be giving your mama heart attacks like that!
Oh boy – what a day. Many good wishes for a way way way better Friday.
Get BETTER kisses (and prayers) for Simone. Hugs for her poor surely beyond frazzled mommy.
Well crap!
Oh dear. Best best wishes for all of you, parents and baby.
Thank you for updating us, Alexa. Do you know how much the Internet aunties wait for news about your little girl’s wellbeing?
I hope this was the last time the rollercoaster took you down… tand that from now on, everything will go uneventfully fine for you and your family! You deserve it.
And I thought my day sucked. Poor baby. I’ll keep praying for you guys.
Aw, SHIT.
I’m thinking of you guys.
That is definitely a horrible day. But little Simone (and her long suffering parents) are in my thoughts!
Oh hell. Hope this is the last little hiccup in the road home.
Sending healing wishes to lovely Simone.
Good Grief!!
I HATE that about the NICU. Once you feel like you have finally gotten your bearings and the rug is pulled out from under you once again.
Praying for your family,
Erin
Hoping that rug remains firmly under your feet from now on.
You know, I just made a poster about 3 weeks ago promoting the March of Dimes March for Babies event, to encourage our coworkers to sponsor another coworker of ours who will be participating. I thought if some people around there realized that several of us at work have babies who once spent time in the NICU and are now big, healthy, happy miracles, they might be motivated to donate. That’s when I found out that a couple of my coworkers are actually offended by the poster, because they heard that the March of Dimes does animal testing. I was shocked–to think that a person could bag on the March of Dimes for any reason, after all the work it does for babies every day…I was flabbergasted. When I think about what Simone is going through today, it makes me madder. I wish my stupid coworkers could spend a day in the NICU with you, watching what she goes through in her fight to survive. Then I wish I could shove a test tube up their hindquarters.
Preemies are great at that–sailing along for a couple of days nicely and then scaring the shit out of everyone. Hmm … that’s probably not very consoling, but I assure you it is very normal. She sounds like she’s doing great in general. I really think so. XOXO
I just can’t believe Simone (and you!) …. has to go through so much.
I think about her a lot, wishing, willing and praying her along.
Hugs to you Alexa. You will be needing those crib sheets soon. xoxoxo
Thinking of you, hoping this day sucks less with each passing hour.
Oh, man. You don’t need or deserve any of this, honey. I will be keeping you, Scott and your sweet baby girl aloft with my strongest and bestest mental vibes (sort of like how I keep planes aloft when I am flying on them — and thus far, it’s worked).
The strong healing prayers have not wavered and will continue. That is some damned scary shit. I wish I knew what to say. How about: Hang in there. You are tough and Simone is tough.
Keep your head up, Simone!
Awwwww shit. C’mon Simone, Buck Up. Life outside the NICU ain’t so bad. Tubes are so last year. Hang in there, kiddo.
Are you getting nauseated while on your own personal roller coaster yet?
Well, FUCK!!!
So sorry things took a dive!
May you be comforted in remembering how many times this little wonder of wonders has bounced right back from previous dives – something she is destined to do this time as well.
Hang in there, dear mom and dad.
Stay strong, all of you. After his first 4 weeks in the NICU, I’m watching my healthy 19-month old scale every piece of furniture in sight. Our weeks were nothing compared to what you are going through, but have hope….one day down, one day up…eventually she’ll stay up.
Damn it. Hang in there…all of you.
Oh honey, what a crap day! I’ll be praying for you and your beautiful little girl!
Oh man. Now *that* is a bad day. I’m sorry.
OOF, my heart. Seriously.
All swollen up with hope… just wishing for this to be over already, with Simone in arms, not a single thing attached to her but you.
man – she is going to have a lot of mental/physical problems when she grows up. I sure hope you can deal with that!
Oh, honey. Oh, my. Be strong, Simone!
*Ignoring nasty comment above*
Hopefully the afternoon was less eventful. Crossing fingers and thinking happy thoughts.
Firstly, who in the hell gets off writing THIS to you on your blog? “man – she is going to have a lot of mental/physical problems when she grows up. I sure hope you can deal with that!”.
How hurtful and co-incidentally also full of shit. I don’t believe that any commenter has the knowledge of Simone’s situation or the NICU care, complications and prognostic factors for preemies in general to be making predictions like that. And so rudely. The mind does boggle.
Anyway, nastiness aside, hopefully Simone kicks whatever possible infection is bugging her, soon. Thinking of you all,
J
Shit. Hang on Simone and Alexa, hang on. I know it is hard when you are in the middle of it all. Hell, I know it is hard once you’ve reached the other side. (been there, done that, and probably have ptsd as a result) Please know that Simone is getting the best care possible and that she is such a fighter. This plunge on the roller coaster ride will start to move up again very soon. Until then, hugs and prayers to you and Simone.
Much love.
I’m sending good, healing vibes to Simone. . . some calm, still waters to you and Scott and a hearty eff off to the person who commented about 4 spaces above me.
Oh, hell. That’s a big bag of suck right there.
Here’s hoping things calm down quickly.
Simone is such a strong sweet girl! Sorry she is going through a rough patch.
Crappiest, scariest day ever. Here’s hoping tomorrow is better. And that Simone is better.
Another Jesse commenting, but this one thinks, nay, *knows*, that Simone is going to be just amazing when she is older. One can tell just by looking at her 2-dimensional internet image that she is a smart, kickin little lady.
Oh, gosh. I’m so sorry. I hope all Simone’s steps will carry her forward, not back, from here on.
(And I trust you’ll pay no mind to Jesse, as his post here makes it clear he has mental problems he cannot deal with. Too bad he exposed you to them rather than holding them inside.)
Oh I’m so sorry for all of you. Keep on Truckin’ Simone. You can do it.
Oh baby, don’t do that to yourself, your mommy, your daddy, your doctors, your nurses–or to the rest of the internet. We want you home and healthy, and as soon as possible.
oh my jesus. cheering on all of you, and telling the universe to back off. you all deserve a serious (serious) break.
My heart sinks … but I feel comforted by other posters here, who have experience with tiddler babes and their scary habit of lurching into crisis mode just after their mummies have started to attempt a brief exhalation.
I trust these other mummies, and I trust your strength. I know you only through your words, Alexa, but you are a tough and wonderful woman. You use your words to such effect, you take our common language on such glorious dances and such outlandish adventures, I have NO doubt that you have helped, consoled, inspired and encouraged so many readers. Simone is a tiny girl from tough stock. She has a wonderful, talented mummy.
You gotta gift. And you gotta girl. And we love both.
A small comment to Jesse: Take it somewhere else. Please make a sentence out of the following words: ‘Problem, what, is, your?’
Keep posting, Alexa. Sending you a sackload of good thoughts (with a strong drink sewn into the lining).
My heart sinks … but I feel comforted by other posters here, who have experience with tiddler babes and their scary habit of lurching into crisis mode just after their mummies have started to attempt a brief exhalation.
I trust these other mummies, and I trust your strength. I know you only through your words, Alexa, but you are a tough and wonderful woman. You use your words to such effect, you take our common language on such glorious dances and such outlandish adventures, I have NO doubt that you have helped, consoled, inspired and encouraged so many readers. Simone is a tiny girl from tough stock. She has a wonderful, talented mummy.
You gotta gift. And you gotta girl. And we love both.
A small comment to Jesse: Take it somewhere else. Please make a sentence out of the following words: ‘Problem, what, is, your?’
Keep posting, Alexa. Sending you a sackload of good thoughts (with a strong drink sewn into the lining).
Trouble sending this – hope it reaches you…
oy vey!!! i hope the afternoon was alot less eventful.
Sorry.
oh, I love reading your blog. as a former NICU nurse, you summarize so many things that i was thinking and feeling at the moment (although not as acutely as you!) but could never put into words. reading your blog is a trip down emotional memory lane. your sweet baby is doing so well. hang in there!
Crap. I’m so sorry!
Sorry you and Simone had such a shitty day. No matter how many times they tell you about the NICU rollercoaster (and feel free to slap us when we do), it never makes those bad days any easier. Simone is a tough, spunky little baby. Try to hang in there. She’ll be back on track soon.
holy craziness. that sounds terrible. i am so sorry.
Oh for fuck’s sake. What a horrible day, what a horrible, horrible day. Sending you both light and love and all sorts of good vibes.
Oh, honey.
I kept rereading, thinking “How can this be happening?!” I’m so sorry Alexa. I’m praying for you and Simone.
Simone! You are SO grounded!!!
((hugs)) Alexa.
Looks like the bratfree bitches are back at it! Seriously, who does that? Anyway, my heart is in my throat over here, awaiting your next post. Lots of love to that sweet little baby and her brave mama.
Dude. So not in the plan.
Tomorrow is another day. I’m sending you all my best, biggest wishes that it is a *better* day.
Shit!! I sure do hope the afternoon was an improvement. Perhaps Simone just thought she needed a bit more attention…. a Drama Queen in the making perchance? I have everything crossed that things will go smoothly from now on.
Just you all stay tough and remember to breathe, perhaps giving Simone the odd nudge in that direction too. Bourbon and cookies sound very good again, tell Simone that she has to grow a bit more if she wants some.
Jesus Christ. I hope Simone (and you) have a better day tomorrow.
Oh dear God, I hate posts like these. Rooting for you Simone!
“man – she is going to have a lot of mental/physical problems when she grows up. I sure hope you can deal with that!”
I shouldn’t react to it and I know you know what bs this is. But I can’t let this pass.
Best regards from my daughter who dealt with similar problems 15 years ago. She is a beautiful, healthy, stable young lady now, proud of her achievements as a newborn and very interested in other preemies. In Simone, for example.
Comments such as the above make her grin. She thinks it’s envy because not everybody has proved his guts the way she has. And Simone.
(I wonder how much emotional maturity is displayed by such posters who clearly have no clue at all but HAVE to chime in.)
Everything will be alright and perfect and just the way it should be.
Keeping you all in my thoughts.
Maybe she didn’t like the sheet pattern? Or she wanted a different style of crib?
Seriously, I’m sending positive thoughts to the Twin Cities for all of you. (Now I do have to say that my positive thoughts made my friend’s baby’s cystic fibrosis test turn out negative so I have some damn fine positive thoughts to send.)
I am really sorry Alexa.
Oh Alexa. I really hope your ride on the NICU roller coaster ends soon. Or at the very least, you’ll be able to throw your arms up in the air and gleefully yell “WHEEEEEEEEEEE” right quick.
Kisses.
Oh and Jesse? If you’re going to come up in here talking shit on preemies, ESPECIALLY this one, you should at least have the balls to leave your email or web address. You’re a pathetic coward.
Shit, Alexa.
I am glad, then, that this day is over. Tomorrow will certainly be better with no more unnoticed tube disconnections of any kind.
**********
And stoic, though I am trying to be, I am fiercely defensive of you and sweet Simone and wish to drop kick anyone who is in the least bit snarky.
However, I was reading Sweet/Salty Kate once when a “troll” dropped in and she thought it best that we remain “an unpokeable bear.”
So, here I sit. Unpokeable. Until further notice. (A bear, nonetheless. With claws. And teeth. and weight to throw around. At your disposal. Just saying…)
Oh no no no, none of that is any good at all. Scaring the heck out of me. Heart hurting for you, honey. Hang tough, Simone!
Hang in there Simone and Alexa! You’re both in my thoughts and prayers.
Oh, hell, what a day! I am so sorry the rollercoaster took a downward turn. Praying this was the last “down” and that everything is “up” from here! Please update us when you have a chance. Hugs sent your way!
Oh my. I so hope the rest of the day, week, months are much better. Hugs to you.
Oh, Alexa, I can’t tell you how sorry I am to read this. I’m keeping Simone and you in my thoughts, and hoping with all my heart that the little one returns to previous form in no time at all.
Oh, crap. Really not what I was expecting to read this morning: I thought your rollercoaster was all levelled out. I should have known better: NICU doesn’t quite work that way. But she’s a big strong girl now compared to February, and she’ll come back fighting, hopefully this afternoon. Hugs x lots.
Shit. Not what you needed at all.
Ah! Sending lots of good and healthy thoughts your way. Hugs!
Thinking of you and hoping and praying that things look up over the weekend. Go Simone! You can do it!!
OK, Jesse was on Full House and then went to ER. If that’s not enough medical knowledge for you people, well, then, I don’t know what to say. Blood recirculator’s got my tongue, I guess.
I am hoping Thursday afternoon went better. And all of today, and tomorrow . . . . The Baby of the Week judges don’t take kindly to scaring the crap out of the parents.
Dammit. This should be coming to an end, and that sweet baby should be coming home to her Momma and Daddy and their new Deluxe Apartment in the Sky.
Sweet Jesus, enough already!
Hey Jesse,
I sure hope you check back…
Fuck Off.
and Go Away, you Dolt.
Sorry to hear that. I hope it’s nothing more than a bump in the road and that 13 years from now you’ll be shaking your head and trying to decide if this event or her 13 year old attitude is worse. Hugs. Praying for you guys too.
I’m so sorry that you had this episode — it sounds so scary, upsetting and frustrating.
I have yet to hear a NICU story that is all smooth sailing and steady improvement. This seems to especially be the case for the very little ones. As you know better than anyone, Simone is very tough. My faith in her is unshakeable.
I am thinking of you and hoping for you. And of course obsessively checking your blog every five minutes. Please be well. All of us our here in internet-land are sending you all the good karma we can muster.
Aw Simone… I can’t imagine the rollercoaster ride you are on.
I’m hoping this is a *very* short hiccup.
Big hug to you and Scott.
Son of a bitch! (Shit, Fuck and Christ have already been used a few times so I’m trying to balance it out ;)). I’ll be another one to ‘not comment’ on the buttmunch that left such an uneducated reply on here.
I’m still thinking of you guys all of the time. Apparently my super powers weren’t working yesterday, my apologies. We’re all pulling for your little girl, Alexa. Many of us know what the NICU world is like and our hearts go out to you. No baby or mother should have to go through the torment, but unfortunately it’s just one of those things that some of us have to deal with. I have full confidence that Simone will bounce back from all of this. I’m telling you….she’ll be 16, headstrong, independant, and bitching that you don’t let her use the car enough and you’ll be sitting back wondering how on earth she had such a rough beginning.
Hugs to the three of you.
Oh dear Lord. Simone, baby, please try not to give your mama any more heart attacks right now. Save it for your teenage years. Right now we are looking for nice, steady, positive progress.
Hugs, vodka, and stinky cheese to you, Alexa dear.
Yikes! Simone’s been a busy girl. Here’s to more placid days ahead (lifts glass of Old Tyme Ginger Beer.)
Your new glasses are perfect; just the right shape for your face. They make you look both sweet and intellectual.
Just when I got lazy about checking in here.
Good grief. Hugs to the three of you. I’m hoping/praying that the next post will be like ‘Splish’.
Oh no! Poor sweetpea. Hoping you are on the upswing now – for surely as quickly as things change for the worse, they will change for the better? Good days are on the way..
I hope Friday is a LOT better than Thursday. That is just too much to go through.
Thinking of you and hoping you get better news soon.
I’m hoping that Jesse was just insensitive and not deliberately mean-spirited. Hard to tell, though.
i don’t even know what to say. i cannot even fathom what that you and Scott are going through STILL and it all makes me so angry. as usual, you are in my thoughts.
*torn between the fact that HATEFUL people love nothing better than to invoke more hatred, but for now i will just say that some people deserve their existence far less than the one you have fought so hard to share with the world. the one the world cannot wait to gloat over when she discovered a cure for cancer and poverty and hateful bastards.*
Holy hell – what a morning! Hang in there Simone – stop scaring Mom and Dad like that!!
The ups and downs of the NICU are hell. Here’s hoping that there is a really big UP right around the corner.
Dammit.
I wish I knew more better things to say. Hang in there. We’re sending all the prayers and hope that we can!
Son of a bitch. Sending good healing vibes your way and hoping that Simone comes back from this downturn quickly. Hugs.
Damn, Damn, Damn!!!! Hang in there Alexa, Simone will kick this and be on her way up again. Sending lots of love your way!
Prayers for a better weekend for you all ;-)
Feel the love and support from all of us out here in cyberland. I can’t wait to read the post of Simone’s homecoming and her participation in the March for Babies. I have a team of about 20 who will be walking in Reston, VA on Sunday in memory of my first son and in honor of all babies and families who don’t get such an easy start.
Wow, very rough morning. I know the NICU is an up and down process but that seems like a lot of stuff to go through. When my ds was in the NICU he had a few good days in a row followed by some pretty bad days. I am not sure why it is not more even keel…
I imagine that this is hardest on you, I hope that you are feeling better today.
Well that’s not good. Any idea what set her off? Did you refuse to let her wear eyeshadow or something? Seriously, keep us posted There’s lots of worried surrogate grandmas out here.
Oh man, Alexa! Not at all what I was expecting to read today. I really thought Simone had finished the rollercoaster ride. I just love this little one… I look at her pictures and watch her videos every day. I’m sending her all my love and praying for her to grow bigger and stronger each day.
Just thought I’d come back to post and say that I just got a very happy message re: my friend’s (one surviving) twin who was born at about the same number of weeks as Simone — and I hate to say it, but that little girl had a time in the NICU that makes Simone’s stay there look like a walk in the park (I am not kidding, think multiple surgeries, think one kidney lost) — *however*, said tot (who is a total charmer) has just undergone extensive testing and basically been pronounced to be well ahead of the curve on a wide assortment of developmental tasks, even not taking into account her adjusted age (but especially if you do). All of which is to say hang in there and here’s hoping you’re posting things similarly gleeful to the email I received, in the not-too-distant future.
The hardest part of the NICU (for me) were the continual ups and downs. I never thought they would end, but they do. Do what you need to do to stay sane – I used to cry in the parking lot of the hospital. Hang in there.
Thinking of you Alexa. So hoping that today was a (much) better day for Simone.
I really hope you all had a better day today. Little kiss, Simone.
DANG!! More prayers coming your way. I would block anymore blog entries from that Jesse if you can – Jesse doesn’t know squat! Simone will not remember any of this – memory does not start to form until about age 2 1/2 to 3 YEARS of age. She will be fine! Definitely more prayers coming your way from Michigan.
Hang in there Simone. So many people are pulling for you and your mom.
I’m sorry. Prayers coming your way.
argh! I am so sorry. I hope that the rollercoaster takes an upswing, stat. (If you will excuse my mixed metaphors.)
What a lot for a mummy to process. I’m sorry you’ve all had such a jolt, but the other NICU mums have indicated that Simone certainly isn’t falling outwith the normal experience of a preemie. That’s not to say that it isn’t horrible to experience in the moment but you should take heart! This little setback will soon be behind of all of you.
As for That Comment, – Jesse, you are an ass. A total ass. I know you weren’t trying to stir up anything on this blog because friend, there are several hundred women here baying for your blood. So back off.
So glad to read on Twitter that Simone is doing better.
I just love your little yummy! Please give her lots of hugs and kisses from me and take her home soon.
Well, Frick! Come on little one, you are a strong and healthy little girl – be well.
Alexa,
I’ve been where you are, and understand how hard the ride is. My only advise is to take it one day at a time, and celebrate the small triumphs. “One step forward, and two steps back” is the NICU mantra.
I walked in the MOD March for Babies this am, with about 5000 other people. I lost track of the number of signs that I saw for 23 weekers, and other babies born too soon – that are obviously doing beautifully now. This time next year, you’ll be looking back at your NICU journey and wondering “how the hell did we survive all of that?!”. Of course, by then Simone will be running all over the place, and you won’t really have much time to think about it….
(((hugs))
Lori
ps
To Jesse – thank you, for not reproducing…The world will definitely be a better place without a child raised by you.
Comment number 26 has no heart, and clearly no children… Shame on you, “Jesse”. Use your head!
Short story- you’ve heard lots like this, but maybe it’s more for idiots like Jesse…
My dear friend was prego w/twins, one boy, one girl (sound familiar). Went into full labor at 23 weeks. Gave birth to both. Henry lived for nine sweet hours and was a dear, lovely miracle. His sister, lived in the NICU for three months, ups and downs provided. She is now four years old. She’s is smart, she dances ballet, she tells funny knock-knock jokes, and she is as rotten as the day is long when she is playing with her girlfriends! When I read about Simone, I think of Avery and her seemingly long road to “normal”, which now seems an eternity ago. She is thriving in preschool and while she is short, I assure you, she has NO physical problems (hello, ballerina)!
While you may feel an island in this sea of NICU drama, know that there are many survivors who are out there. Simone is one of them! Everyday, with its ups, downs and all-arounds, is another day for her. Another day that you are her loving, witty and amazing mother! Remember that! Keep the faith!
lots of love to all of you xxx glad to see things are improving from your twitter comment.
This is the internet. We’re all more or less anonymous here. That gives some SNEAKY COWARDLY PEOPLE an opportunity to let loose their nastiness on innocent babies and their distracted mothers. People who play these kind of sick games are beneath contempt. They spew cruelty and then claim to be deserving of compassion because they claim to be bereaved, as if that’s an excuse for the inexcusable.
I don’t buy it. There was no NICU trauma. No lost baby. It’s a lie and a fantasy by a very screwed up waste of skin whose jealousy and self-loathing practically radiates from their posts. Please go away. Go eat worms or whatever you do in your spare time. Nobody cares about you and your ugliness.