So, how do you like the redesign? I seem to be all about fresh starts these days, and this particular new leaf was easy to turn over thanks to the very patient and talented Margot, who not only designed all this but also put up with my (patent pending) patois of perfectionism and clumsiness. When I answered questions about my color preferences with references to Swedish Pippi Longstocking movies and requested minute adjustments to specific letters in my header image, Margot gamely refrained from reaching through the screen to throttle me. And when I sent her an email with the subject line EMERGENCY! shrieking that the site had suddenly lost its formatting and wondering whether someone had hacked into my Very Important and Hack-worthy website or if a server had been felled by bears, she kindly informed me that I had deleted a vital curly bracket with my ham-handed CSS modification—but without mentioning the “ham-handed” part.
Incidentally, it turns out that curly brackets are the key to everything. I have seen this played out many times in the past week, and if ever I emerge from my apartment to find the world crumpled into rubble at my feet, I will know that surely there is a misplaced curly bracket in the Great Stylesheet in the Sky.
But the design is finished now, with the exception of the About page, and a good thing, too, because the world was starting to look to me a bit like this:
…Which is how you know you have been spending too much time up to your htmelbows in code.
Anyway, three cheers for Margot! Probably she could use a cocktail about now.
Actually, I could use a cocktail about now as well. Simone celebrated her two-month birthday yesterday by testing positive for MRSA colonization. Yes, that MRSA.
But before you start rolling in ashes and rending your tunics, let me assure you that this is not the same thing as a MRSA infection or (god forbid) MRSA sepsis. The MRSA is not in her, so to speak, it is on her, having set up a tiny utopian colony in her nasal mucous membranes. I have to say that hearing people say that your baby has been “colonized” is rather alarming, and I cannot help but feel that MRSA ought to GO BACK WHERE YOU CAME FROM. WE DON’T WANT YOUR KIND AROUND HERE. Suddenly multiculturalism seems like a terrible idea, at least when the cultures involved are methicillin-resistant staphylococci.
So now there is an isolation cart outside Simone’s room, and a sign on the door, and every nurse who enters wears a gown, and it just about breaks my heart. I feel defensive on Simone’s behalf, somehow, which is silly as it’s not like she contracted MRSA by being especially slutty. She previously tested negative, but after 60-some days in a hospital a baby is bound to catch something. I have been told that being colonized should not effect her health, and in fact a large percentage of the population is colonized without realizing it, meaning you, dear reader, could be harboring a colony right at this very moment. Doesn’t that make you want to take a quick shower? In bleach?
Yesterday went downhill from there. Simone had a positively medieval-looking eye exam (not the cunning miniaturized eye-chart I had been hoping for) and every time they touched one of her eyeballs, which were held open by tiny metal spiders, she let out a squall like a cat would if tied in a burlap sack with a wolverine. The exam showed beginning stages of Retinopathy of Prematurity (stages one and two), and while it’s nothing to worry about just yet, between that and the MRSA I was reminded that things are always popping up when you least expect them, and that there is a whole month left in which to fit a few more NICU catastrophes. I flew right back to the place where I used to live, the place where I am afraid to even imagine my baby coming home. And of course I know that if Simone does come home, there is nothing to say she won’t die of RSV or SIDS or by pulling one of our bookshelves onto herself (my god, I’m a laugh a minute today, aren’t I?). She is doing so well there is no reason for me to be so tiresomely morbid, but I can’t seem to help myself.
Lately I am thinking often of this family, who are facing something they likely never imagined. Babies should not get brain cancer. It is just…wrong. The lovely Emily is organizing support and donations, because if there is one thing those parents should not have to think about right now, it is money.
What I think about, mostly in the middle of the night, is how they will ever feel safe again. I wonder that too for myself, after everything that has happened in the past three months. When will I feel less like every moment with Simone could be my last? Will I ever be able to take her, just a little tiny bit, in the happiest possible way, for granted?
P.S. The first person to say something about hearts walking around outside bodies gets AN ANATOMY TEXTBOOK SOAKED IN HUMAN BLOOD.
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Alexa,
The redesign is lovely, thank you! And I’m sorry about the MRSA, and the retinopathy, and most of all, for the fear and heartache that are ongoing. I hope they settle down soon. I think the thing that is most amazing about people is our ability to adapt to how things are now. So I do believe that at some point, you will be able to take Simone (in the happiest way) for granted. But I can’t promise that, I don’t really know… I guess the only thing to do (ever, really) is go day by day.
I thought you’d be interested in this very timely NYTimes article. Basically about exactly what you just posted on.
http://www.nytimes.com/2008/04/08/health/views/08case.html?ref=health
The redesign looks lovely!
J
As a mom of a 29 weeker. Who is now almost 8 years old, I will say it does get better. When she came home after 70 days in the NICU I thought like you I would never be able to relax. And I will tell you it does take time, to have that feeling of headspinning nicu rollercoaster subside. But it will and before you know it she will be heading off to school. We are keeping our fingers and toes crossed that the rest of the ride is as a feeder/grower.
Nice new swanky format. Yay Margot! Despite the recent developments, it’s good to see that Simone seems to be doing so much better.
You’re looking downright fancy now!
I’m sorry to hear about the MRSA and the retinopathy. My husband has to perform those NICU eye exams from time to time and you’re right that they’re horrible. If you end up needing any additional info on the ROP, let me know and I’ll unleash him on you.
As a parent, I don’t think you can ever fully relax or feel safe…but there definitely is a new normal (another cliche, I know, I’m sorry). Before you know it you’ll be tearing out your hair because Simone won’t pick up her toys.
Say, when you get a few moments, you know, in between scrubbing and washing gowns and whatnot, wanna redesign my site? Puhlease? (Love. it.) And love Simone, so up on the latest, MRSA indeed. As long as no one put up a flag in there, she’ll be fine. Off to swab my nasal cavity and donate some $.
She looks GREAT. And your husband is not too bad either! ;-)
The redesign is also be-yoo-tee-ful.
Coming up with alarming scenarios involving one’s children is not, alas, a talent limited to those whose children have actually experienced health issues. I wish I could tell you otherwise.
Yay! My first post on your blog. I’ve been reading ever since Simone arrived and have been anxiously waiting for updates.
Nice redesign, btw. And I love the “htmelbows” comment. Sometimes I feel that way and I’m only doing really basic stuff.
As for the MRSA. Yeah, it truly does suck that Simone has it. But don’t feel as if she is being “quarantined” because of it. Think of it as the hospital wants to ensure that Simone doesn’t get anything else. Perhaps that will ease your mind on the whole “slutty” aspect.
Anyway, love the hubby & baby picture. And I’ll continue to look forward to more posts!
um…it’s like having your heart walk around outside your body. :P
please send blood soaked anatomy book to ME
c/o bad sense of humor…
I bet Simone makes a preemptive move on the MRSA and kicks the SNOT out of that unwanted colony. (pun intended).
You still owe me a keyboard for that twit though.
As always, positive thoughts and prayers heading to you and yours. And now also out to Brian, Katie and Emily.
God Bless.
First, just let me say — YES, in all likelihood, you will be able to, someday, take her a tiny bit for granted. I have a former 25 weeker, who spent 99 days in the hospital, with many of the same ups and downs as you have gone through. When he’s laying on the floor whining for no reason, now at 2 1/2, sometimes I get really sick of him :)
At our hospitals, they did not let parents watch the eye exam (I guess I could have insisted) b/c it’s so brutal looking. i am a trooper, and was able to watch all kinds of things, but I’m glad I did not have to watch that.
Simone looks great, and so does the site!
Erin
Love the redesign. It’s sleek and sophisticated.
And I’m hoping that the rollercoaster ride ends very soon, and that Simone gets ready for some serious roller-skating this summer.
Lovely redesign. Tres swanky.
Ugh for the staph. You end up being a colony for something at some point in your life, the timing just seems to suck.
In that picture… I sense something is missing… her feeding tube?
As for relaxing. You will, when the temper tantrums start happening regularly.
MRSA is crappy. Tell Simone that her friend Becky who lives in the Internet is also a carrier for MRSA, and that it’s NOTHING TO BE ASHAMED OF!
(I’m a nurse, not a whore).
Holy Shit Alexa, you WATCHED the eye exam??? Are you nuts! After a third nurse told me she gets physically ill watching the exam, I decided it was in the kiddos best interest for me not to watch. I did stay for a few, but never looked. We also had ROP, but it all totally resolved on it’s own. So definitely try not to worry about that yet. Our little one might still need glasses at some point, but really how stinky cute are kids in glasses!
MRSA sucks! We also had to deal with it. Same thing just colonized in his nose, nothing else. Mostly it was just a total PAIN IN THE BUTT for us and if you happened to mention my name to the infection control lady or any charge nurse, you would most definitely be met with a big sigh and obvious eye rolling! One super great thing is that Simone will almost always have her very own nurse even when she no longer needs one!
It’s been over a year and the total fear still shows up, but much less frequently. I often wonder what kind of parent I would have been if I hadn’t delivered so prematurely. I hope the older they get I will be able to let go a little more at least to the point of not coming across as a crazy new mother.
Remember you can give me a call anytime if you need anything at all. And I love the new design.
I love the redesign. How did they find out she had been colonized? Did they put up a tiny flag on the tip of her nose? In all seriousness, I am still praying for you and your family. Someday you will have Simone home. Someday this will just be a distant nightmare. Someday you will never believe she was the tiny baby with all the troubles.
The photo is beautiful.
Hi Alexa, Simone is doing great. I’m sure the MRSA colony is practice for when she rules the world – you have to start kicking butt somewhere! She’ll have that subdued in no time at all. As for the ROP, well there’s treatment for it and many cases leave minimal or no damage anyway. YOU have to stop crossing bridges before you get to them my dear. Parenthood is full of potential disasters regardless of the length of time children spend in utero and you can’t waste your energy on things that probably won’t happen. None of us would survive our children’s infancy otherwise – honest! I’m sure you have lots of packing to do with the move to the new improved apartment so use your energy there. Then, thoroughly worn out, go enjoy your beautiful little cherub, who, I’m sure is doing much more interesting things than colonising bugs (wait ’til she starts collecting the real 8-legged variety as one of my sons did. Yuck!) and having an possible eye problem.
Be positive, one day at a time :-) now go and have a cookie and a bourbon, maybe some chocolate too.
PS.The new design is great.
Gah, eye exam day. You could ALWAYS tell when it was eye exam day in our NICU because EVERYBODY WAS PISSED OFF. Babies, nurses, parents. It was on Mondays, every 2 weeks. It was also at 6 am, I think so that most parents would not be exposed to the EXTREME BARBARISM that is an ROP exam, and to protect Dr. S from the parents who would have been out for blood it they had seen said exams.
Stage 1/2 ROP may well resolve on its own – S was at stage 1 bilaterally and it had cleared up on its own by about a week after her due date.
What they all said and many many many hugs.
Like the new look. Congrats on getting it done. I remember from the few quarters I did web programming classes all about the missed brackets and punctuation. Made me decide to become a nurse instead. And I try not to think about the fact that as a nurse I am likely colonated with MRSA myself. Hope Simone continues to do well.
The bit about the Great Stylesheet in the Sky was just hilarious, Alexa.
Sorry to hear about Simone’s colonization (!?) Hoping for you as always.
I know I probably worry less, but never take my daughter for granted. After a devastating stillbirth and, a year later, her early birth, I am thankful for every moment … even the bad ones. And I’m already worrying about her getting in a fatal teenage car wreck, while still fretting about toppling bookcases. That brain cancer story does not help.
Your daughter is beautiful, by the way.
Love the redesign!! Margot deserves every bit of that cocktail and maybe some chocolate to go with.
Sorry to hear about the MRSA, though I’m glad it’s a colony and not taking over the neighborhood, so to speak. Hopefully it will all get bored with Simone’s nose and move on to other neighborhoods. This isn’t really the place for MRSA anyway. Too many upscale coffee shops, not enough dark corners, waaaay too many yuppies. MRSA likes dark tenements.
love the site redesign humor, and I’m sorry to hear about the retinopathy and MRSA, although it sounds like both could easily get resolved without too many difficulties. Definitely the NICU pushes fear to a fever pitch, but I think part of it just means that you’re a parent, no? So it’s normal, especially considering the circumstances…
yep and yep- one of our triplets was MRSA colonized in the NICU and they all had stage one or two retinopathy but it resolved on its own. luckily, being MSRA positive without being sick isn’t so bad because you get private or cohorted rooms with dedicated nurses so that’s good. i was super pissed when my boy tested positive for MRSA b/c it proved they weren’t being as careful as possible to avoid spreading it but it is rampant in hospitals so what can you do? a lawyer told me if you could sue for hospitals for spreading staph, they would all be out of business.
My 28 weeker got MRSA and pseudomonas, another nasty bacteria. All the doctors and nurses had to gown up, but so did my husband and I, which I thought was somewhat ridiculous. I wasn’t touching any of the other babies! Well, maybe that one…
I managed to avoid NICU eye exams but it’s impossible to avoid the follow up exams since you have to, you know, bring them in. Those damn Clockwork Orange eye clips are so terrible, but man, they sleep so well after the exams!!! *SILVER LININGS*
We’re a few months out from our NICU discharge and just when I started to feel like perhaps I could stop kissing her GOODBYE goodbye, she went and got herself hospitalized again. So when you find out when we can start taking these babies (happily) for granted, let me know so I can mark it on my calendar.
What an awesome picture of Scott and Simone! I’m also sorry about the MRSA, I think it will disappear shortly. What a snotty place to be! (pun intended). There is a ROP specialist in my city – I have no idea if he travels or not, but Minn. is not far from Mich. His name is Patrick Droste, MD. I’m sure your good hospital has their own ROP specialists. There is a family around here who had sextuplets 3 years ago. All of them had ROP and NONE of them wears glasses now. This too shall pass.
Simone is beautiful! I will continue my prayers for you, Simone and Scott. :)
Dear Alexa, that misplaced curly bracket in the Great Stylesheet in the Sky explains A LOT. Thank you for that.
I am sorry to hear about the colonization (ew) and about the results of the brutal eye exam. I hope both problems resolve themselves quickly. Poor little Simone. And what a cutie she is.
I like your redesign! Very nice indeed. And hack-worthy.
Delurking here for a minute – I’ve been following your story for a few weeks now, and am thrilled that Simone is doing so well. I did want to chime in on the whole ‘will I ever feel normal about my kid’ thing – my daughter Melanie was diagnosed with leukemia at age 6. Two years of chemo. Not fun. I thought life would NEVER be the same again. Fast forward to now – she’s 12, a tall, beautiful, healthy girl who’s constantly trying to sneak out to school with makeup on (or a shirt that I consider too tight or too low), talking for hours on the phone or computer with her friends, and don’t even get me started on her room (is there carpet in there?). She drives me nuts, just like a pre-teen should, and I love it. Yes, it’s still in the back of *my* mind, and probably always will be. She’ll be 50, calling me to tell me she has a fever, and I’ll be thinking “uh-oh”. :-) BUT – life really is NORMAL now – well, as normal as life can get! It’s not day-to-day all-consuming worry like it was.
You’ll get there.
Hoping that your girl gets to come home soon! :-)
Take care,
Kathi
Alexa, I haven’t commented in awhile, but I have been reading, and I have to say that I am so happy to read about how Simone kicks every potential threat’s ass day after day. That is one strong baby you have there; she clearly takes after her mother.
I would comment on how much I like the redesign, but all I can seem to look at is that gorgeous picture of Simone and her Daddy.
Having been a Mother since 1960 I can tell you that You will never fully stop worrying about your Kids. I am almost 70 and my Mom is 100 and she tells me she still worries about me.
I check on you every day. Keep up the good work and God Bless.
oh. somebody already won the anatomy text. poop.
may i just say then that the site and the offspring both look great?
Love the new layout. Hate HTML coding.
Glad Simone’s not infected. Sad she’s having potential eye problems.
Hoping everything works out for the best. For everyone.
For about the first 5 weeks my daughter was home from the NICU I had a routine. If there was ever one second where I felt like I could relax, I would immediately go in to Full Alert Mode and start scanning my mental file for everything about which I needed to panic. It gets better. I’d say it took about the first year.
Good luck with the MRSA. I’ll tell you that having your baby come out of the NICU at the end of RSV season is really ideal, because you get a lot of time between “brand new preemie” and “start of the next RSV season.”
My wise old Grandma told me this: “You worry about ‘em more when they’re 55 than when they’re 5, because the stakes are higher (high blood pressure, diabetes, etc.) and you have NO control over what they do. They are always your babies, and you always worry.” Any suggestions, Gram? “That’s just life, honey, so get used to it. Oh, and read your bible.” :):):)
Love and prayers to you and Simone.
Love, Laura
OK. Tried to comment before but it didn’t show up. Now I’ll end up double-posting and like some crazy lady.
Annnnnnnnyway, just posted something last night (http://blog.kroppel.net/) about the never-feel-normal-again issue. We went through a childhood hospitalization that paled in comparison to what you, your husband and the marvelous Simone have been through, but we still struggled to recover. The NYT piece Alison mentions in Comment 1 made us fee more normal.
P.S. Love the redesign! Worth every curly bracket!
ooof. i wish desperately that i could answer any of those questions. i’m not sure that curly bracket hasn’t already gone wandering with ALLLL that you have been through. but i also believe that you have the strength and smarts to set it back where its supposed to be.
and truly, simone looks AMAZING. she just gets stronger and stronger. no matter what she’s got to fight through to get better she just keeps doing it!
i guess she gets that from you.
Hmm, I guess I get the bloody textbook because I actually like that ‘heart outside your body’ saying.
Um, how do you feel about ‘chin up!’ or ‘stay strong!’? (I’m already getting a book soaked in blood, so I figure there’s no harm in trying…)
My Gramma had MRSA. It totally sucks to see someone you love so much being handled by gloved, masked, and gowned people who treat them like a leper.
Best wishes to your family for good news SOON.
I am just catching up. You have been on quite a ride. Wishing you and your family all the best.
Take care and good luck with the move
One of my twin boys had MRSA, the other was colonized with it. It was really no big deal, as they are in the hospital and can deal with anything that comes up. For Cole, it just meant some antibiotics. For Roark it meant no change at all. They are almost 3 now and fine, fine, fine.
I confess. I am a lurker. But I feel I have to post now. I am mom to a 24 weeker who also had ROP. We requested an ophthalmologist who didn’t use the metal instruments of torture. Because we watched an exam and were horrified and asked them to not do that again. I know there are doctors who will do the exams without them, but I don’t know if there are any in your hospital. I know this is assvice, but maybe you can ask them? Sorry for the unsolicited advice. I have been reading your story and think of you every day. Strength and peace to you.
She just looks so lovely in that picture…
Delurking to say that I’ve got that Retinopathy of Prematurity, stage 1 and 2 type, and a lazy eye. My brain, however, has adjusted just fine. It has decided to treat the information it receives from the side of my retina as if it comes from the proper place, which of course would have been the center of my retina. All this means for me is a little fuzzier peripheral vision on that side, and a small amount of double vision when I’m tired (both effects are from the lazy eye part, not the Retinopathy). Even with 4 way astigamtism on top of that, my eye corrects to 20/35 on that side, and 20/20 on the other.
Although opthamalogists (sp?) drool and dive for the eye dilation drops when they get a look at the scar tissue, making me sit there for an extra two hours while traipsing students through my exam to shine bright lights into my eyes and oooh and ahh. (the curse of going to a college where the eye exam center was part of the college med school).
Fingers crossed that Simone’s just as fortunate (except for the annoying eye exam stuff, of course).
i already have an anatomy book soaked in human blood, so i’m good… but i’ll still refrain from mentioning said phrase.
CLEARLY your little one is a fighter, and while your fears are real, i’m just SURE she’ll be coming home.
p.s. “assvice” = genius new word.
Hope the MSRA is very short lived. Sweet picture of daddy’s little girl. :0)
I hated the retinopathy exam. The one my preemie had done after she was released (and thank heavens the LAST one) they made me hold her during the entire exam. I wanted to grab and run screaming it was so horrific.
Good wishes. Blow plenty of get well kisses Simone’s way for us please.
I love the new page and have been waiting patiently(and stalking you) for a new update.
Sorry to hear about the MSRA. I have to admit that I totally cringed at the mention of something touching her eyeballs.. ugh..I have major eyeball issues(my brother used to run around the house chasing me while he touched his eyes, knowing how badly it freaks me out) so I don’t blame that little baby at all for protesting. It sucks- all of the things that they have to go through in there. And you know, my 32 weeker that is now 4 months old, had RSV going on a month and a half ago and I about dropped a load in my pants when the doc confirmed that it was RSV. She already has apnea so every night I stress out about SIDS and when the RSV came along it was just too much for me to hear. But! She made it through without it getting too bad.
I think that Simone will be fine, and you, mom, worrying about things like RSV and SIDS just makes you a normal mom. Welcome to the ranks! I think that when the babies have such a rough start you can’t help but worry. worry about what could happen, what Is happening..it’s just part of the whole experience. Moms were put on Earth to worry..it’s our main job description.
As far as taking her for granted just a little? Well, yeah, you probably will eventually. Overall you’ll never take her for granted, but there will be little moments here and there ;) as she grows and asserts her independance.
And don’t feel bad about worrying so much when things are going fine. This time 4 months ago my daughter was doing great and coming along nicely in the NICU and I was certain, every day, that there would be some major setback and there never was. Hell, she did a LOT better than her crazy mother did the whole time she was in the NICU.
Hugs! Always thinking of you.
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