The Audacity of Hope.
When I called the NICU in the wee hours of yesterday morning, Simone was doing well.
“No, no blood in her urine,” said the nurse, “And they said she had some bruising on her groin? And that her leg was dusky? But I don’t see anything like that.”
My god, I thought blearily, she’s got the wrong baby.
Oh no, oh no! wheezed my breastpump.
But when I arrived at the hospital I saw that the nurse was right: Simone’s bruising, so dramatic just the day before, was all but invisible, and her left leg was pinker and measured the same as it had the previous morning. Her creatinine was still up, and her urine output was irregular, but at rounds I discovered that the plan was one I was familiar with from my time on bedrest: Wait and See.
Allow me to recap the subsequent conversation:
ME: But shouldn’t we do something about the object in her AORTA?
DOCTOR: It isn’t obstructing blood flow, and hopefully it will either dissolve on its own or be incorporated into the vessel wall.
ME: But her KIDNEYS! Surely we should do something about her KIDNEYS?
DOCTOR: We’ll do another ultrasound in a few days. Hopefully her creatinine will have come down by then.
There seemed to be an awful lot of hoping involved, for a science, but I am only an editor, so what do I know? Sure, it seemed strange to go from Monday’s STAT ultrasounds to a sort of medical Bartles & Jaymes commercial, but again, I don’t pretend to understand everything, even in my own field. Apparently the word “the” is an adjective. Who knew.
So I sat around yesterday watching Simone uneasily and waiting for something to happen. Nothing did, except that I noticed that my daughter’s adorable jowls make her look like a tiny Angela Lansbury.
Today, however, her creatinine is still up, and so Nephrology is coming over from the university to consult. Hopefully this means we will get more information about what is going on with her kidneys, and whether there is permanent damage as a result of Monday’s possible thrombotic meteor shower. Hopefully I can avoid accidentally referring to the Nephrologists as Phrenology (those similar phonemes will be the death of me). And after some dreadful chest x-rays, Simone is now being treated for pneumonia, a diagnosis which, like the existence of god, CANNOT BE PROVEN. So hopefully antibiotics will clear that—whatever it is—right up.
Now I need a cookie. Dipped in bourbon.
89 Comments
Maybe Simone would also respond well to a biscuit dipped in bourbon? Just a thought. I think the reigning attitude in NICU’s seems to be: don’t fix it if it ain’t broke. I hope you can find some more hope (and dare I say, peace) in this respite. Continuing to think of you all.
Really really really hoping for the best for your family!
Tell me where to send them and I’ll over night some cookies to you!
Thanks so much for the update!
I am glad Simone’s bruising and leg are better and hopefully the nephrologist can tell you something a bit more concrete. I love your updates and would love to see the young Ms Lansbury.
In my years of nursing, I’ve often thought there should be bars in hospitals, because people at hospitals often find themselves in need of a little something. (If there are bars in airports, for pete’s sake…) Anyway, the Wait And See Place is among the best of places to be in the hospital, especially as it is unapologetically pragmatic and often leads to the Much Improved Place. Good omen! We are thinking very positive thoughts for you!
It does sound like a good omen…not to jinx it. We continue to send our prayers your way!
*whew* - Ok really it is just that Simone is so AMAZING and STRONG and BRILLIANT that when Something tried to get her down she was all “uh UH!!! I’ve got mysteries to solve!!!” and away the Something went.
Very glad for this respite and glad for the update. In my head I am making plans for the Raleigh, NC version of the “Welcome Home Simone! party” to take place at some date in the future.
But I probably shouldn’t have mentioned that.
I hold my breath every time I stop by to check on you and Simone. I will continue to hold my breath and think good, positive thoughts for you all.
I refresh all day hoping for good news. Thank you so much for updating, and (although I know you are not a believer) I’m praying for all three of you.
Also, I hear my breast pump say “Oh no!”, too. Or sometimes “No hope, no hope.” Weird, huh?
Glad to hear Simone’s leg is looking so much better; hoping for good news about the kidneys. I seem to be about out of cookies; would you settle for a bottle of Jim Beam with a few Nilla wafer crumbs floating in it?
Am cautiously optimistic right along with you! Hopefully you will find your cookies and bourbon, and hopefully we will see a pink and jowly Lansbury pic in the coming days.
I’m thinking of you and Scott and Simone all the time. Your daughter is truly a fighter, and so are you. You deserve a cookie the size of Texas, dipped in an ocean of bourbon.
How sucky to have pneumonia be the LEAST of your problems. But, yet, miraculously, she seems to be doing all right! I’m glad you have a good team around you and I obsessively check your site so keep the updates coming as often as you possibly can!
This is certainly a roller coaster ride for yourself, Simone and Scott; but you are braving it well. Wish I could send some bourbon cookies with my prayers and positive thoughts.
Keep on doing what you are doing, Simone–keep fighting like crazy to get better and go home with mommy!
The land of waiting is a difficult place to be. Hoping that today continues to be a little better than yesterday, and that the trend of being better each day continues from here on out!
Thanks for the update–I am one of the many who refresh all day, hoping for news. I am so glad that things seem to be improving. I am praying for Simone and your whole family.
I say skip the cookie and head straight for the bottle of bourbon. You deserve it. Except for that whole pesky milk pumping thing. Its such a precious commodity that pumping and dumping seems wrong. Maybe you should just stick to the cookie and maybe add some ice cream and a valium or 6.
I’m so glad to hear things are looking better. I’ll break out the dark chocolate (milk chocolate is an obscenity) and have a little celebration in Simone’s honor!
I would bring you all the cookies & booze you could possibly consume, ever, were it not for a small impediment called the Atlantic Ocean… sending good wishes, good vibes & prayers instead: they are more transportable! God is getting a profusion of nagging from an awful lot of people about Simone. He is in no doubt whatsoever that we want her home!
Also hope your c-section is healing well: NICU is not a great place to recuperate from a traumatic birth. Plus, I’m sure from the sound of things that you haven’t got enough spare brain capacity left over from your grief, worry & fear to even feel sorry for yourself & your stitches. You’ve been road-rollered pretty damn flat one way & another, so make sure you look after yourself.
Hugs. Lots of ‘em.
Oh my. I am such a fan of that pink little leg now. Glad you don’t have to hold your breath on this last episode anymore.
I’m glad to hear the news. Will continue to pray and refresh, pray and refresh.
So glad to hear that things are on an upswing — thank you for the update. I check on you guys MANY times each day and am always glad to see an update — my husband even asks on occasion –” how is Simone today?” I am thinking of her often and hope so desperatly that she continues to do well. Can they do dialysis if her creatinine does not improve on it’s own? Good luck == samantha
more bourbon, more cookies, stat. that’s my prescription.
so very glad to hear she’s holding. continuing to hope hope hope.
Thank you for the update. I’ve been looking for one. By the time Simone comes home from the NICU a well and healthy baby, you Alexa, will probably be able to take the State test for becoming a registered nurse……….and pass it with flying colors!! :)
I am SO with jayne with the idea of bars in hospitals. I would have sold my left nut for a beer now and then.
Hang in there all of you… thinking of you.
I totally forgot how breast pumps talk. When things get better, it will say more hopeful things like Popcorn and Some More.
I’m sending kidney shaped vibes to my brilliant neonate, Simone, and bourbon shaped vibes to her parents.
Delurking to say that I’m glad things are quieter and that the upswing continues. These highs and lows are what make it all so hard. Hang in there!
Definitely dipped in bourbon… and maybe a whole package of them.
Good luck with the appointment tomorrow. I say skip the cookie and go for the bourbon! You have earned that
Holy smokes. That is certainly a ton of information to digest. Hang in there.
I will be wishing you a case of girl scout cookies and a couple cases of Jack Daniels.
Re: booze, go for it, mama. Drink right after you pump and by the next time you pump it should have cleared your system. (This statement has not been evaluated by the FDA. But I read it on kellymom!)
It drives me crazy sometimes how medicine is so much more an art than a science. Must be driving you bonkers right about now. But wait-and-see seems to be a pretty good place to be. Hope things only get better from here.
I just managed to regrow a new batch of kidney cells for myself after a delivery that put me into renal failure and on dialysis, so I’m sending some good kidney karma Simone’s way. They tell me kidneys are resilient organs. They’re quite talented at healing themselves if you leave them alone.
I’m now most definitely going to slip up and call my nephrologist a phrenologist, and when I do, I’m giving them your name. You can blame the bourbon.
Think of it this way: the best machine Simone could possibly be hooked up to, the best surgeon she could possibly have right now, is her own wee little body. She may look a little on the weak & wimpy side, but the human body is AMAZINGLY good at taking care of its own dang self, and sometimes the best thing to do is stay out of the way of that. I take it as a sign of Simone’s Incredible Self-Healing Powers.
Also, consider that while she is shockingly small for a human, she makes a rather large and robust hamster or gerbil. And hamsters & gerbils, while they don’t need to master things like punctuation and figuring out how to order kebabs at the little hole-in-the-wall place that’s supposed to be oh-so-good but is really quite intimidating, *do* have to master the fine arts of Breathing and Heart-Pumping and that sort of thing, so maybe Simone is ahead of the game, after all.
Is any of this helping? Or should I just shut up now?
Here’s to hoping that things stay calm for a little while, and Simone becomes downright incandescent with healthiness.
How about some Kahlua with doughnut floaters?
Dear Alexa, last check before I went to bed — and I was glad to see an update from you. So glad the blood flow to Simone’s legs has normalized, and that her kidneys seem a bit better. What a relief. And I’m hoping my head off that all your hopefullies come true.
Hang in there. And how about a bottle of bourbon, with a cookie suspended inside?
Waiting and seeing is the hardest thing to do when so much is at stake. Wishing for all the best for little Simone!
Yay! I already can’t imagine you without Simone, it just isn’t a rational possibility. I’ll have a cookie and a cognac tonight in your your honor!
Thanks for the update. I wish it were *all* positive — you know, remarkable improvement, etc. — and didn’t involve words like “pneumonia” and “antibiotics,” (and, um, I do know my feelings on this point are a tiny, tiny fraction of yours), but I’m glad some things are going better, others are hopeful, and that little Simone is such a tough, strong young lady.
While I hope you will never need this information, I have two cousins who (for different reasons) each have only one functional kidney; both are leading happy, normal lives.
Continuing to send prayers and warm thoughts your way.
Oh, thank you so much for updating!!! I’ve been worrying a lot on your behalf; the commenter above who mentioned the old “if it ain’t broke don’t fix it” attitude was right. I’ve had some experience sitting by teeny-tiny bedsides and losing my mind myself, and every test or poke or prod seems to make the little buggers desat or SOMEthing, so the benefits of what you might learn have to outweigh the risks of screwing with them. Mind you, none of my three were nearly as early as little Simone, but the one who had the most severe respiratory distress would fall the fuck apart if you so much as tried to TOUCH the child. I would sit there, and think “wow, surely my smell and touch would be comforting,” but the moment I got in the kid’s personal space alarms would start blaring…it was so hard to just SIT there and have pumping be the only thing I could do, but at least it’s SOMEthing you can do, right? I so, so, so hope that yours gets her little act together, postehaste–when they improve it’s as sudden and mystifying as when something goes wrong. Also surely some Ativan, etc. in the breastmilk wouldn’t hurt, since they’re giving it to her anyway, right?
xoxoxoxoxoxoxooxoxoxxo
Just rereading your post. You have no idea how many times I check your blog hoping for an update.
Anyway…just wanted to comment that my breast pump talks to me too…
Bourbon and CHOCOLATE. And then more bourbon.
Still praying and hoping and loving you fiercely from a distance.
Dear God,
Protect Simone. Please give her the use of both kidneys. And dissolve the clot in her aorta. Thank you.
Love,
Flicka
I came here via Sundry and all I can say is Wow. You are now on my daily reading and I pray for the best for you and yours.
Whew…what kind of cookie goes with bourbon?
Bars in hospitals = genius!
Thinking of you and sweet Simone. Prayers, prayers, prayers.
I cannot imagine how incrediby difficult and frustrating it is to just wait. In some small way I hope it helps to know we are all waiting with you
keeping it all crossed for you!
What kind of cookie DOESN’T go with bourbon, might be a better question.
I’m so wrapped up in the Story of Simone that, because I have a little sniffle, I was halfway through reading this post before I realized I was holding my breath so as not to expose her to germs. *shakes head* If I, a stranger on the Internet, am that concerned about her, I can’t even begin to imagine how insanely nutso you must be going right now.
Take care of you, please, too - when Simone comes home, she is going to need her Mommy. All my best to you all - keep on truckin’.
The first thing I do is jump to the end of your posts to see if I can start breathing again. Been thinking of Simone all day. I’ll join you in that drink as I’m heading off to bed.
Sweetheart, breathe and pump! Simone, stop scaring your Mommy and grow fast and healthy.
Sending all the positive thoughts I can muster.
Hugs from Western Australia,
Sharon
Keep hanging in there. Waiting and seeing just kind of sucks so definitely have a drink or two. Hoping the day that rounds take all of 30 seconds comes quickly. I’d love to be there to see your face when the doctors just nodded their heads and say, “Yup. Looks good. See you tomorrow.” Then roll their little carts onto the next room. It will come. Stay tough little Simone and Mom.
Every day is an important one for your dear little daugther—she has already proven how strong she is! I can only imagine how she will continue to amaze you throughout her childhood, teenage years and adulthood! Stay strong…drink a few and have as many cookies as you wish!
So glad to read the update, and still hoping/praying/chanting/voodooing on behalf of you all.
I think a chocolate-chip/toffee cookie would go best with bourbon.
Delurking to send good wishes your way.
Your daughter is beautiful and your spirit is inspiring.
Wishing you much love and peace during this difficult time.
kath
Rooting for Simone Lee the fighter and her amazing Mama Alexa & Daddy Scott! Amazing for many reasons, the least of which is that you still seem relatively sane.
Holding my breath and skipping heartbeats along with you…
Love,
Julie
After all those cookies and bourbon, maybe some of us should be sending you mineral water?
But no reason to vary the pattern on the good wishes– I am sending my contribution your way.
So glad to here things are…not so terrible! She’s a beautiful baby and I wish the absolute best for you all. I know how life in the NICU goes up and down, but eventually there are more ups.
Also, medical Bartles and Jaymes commercial? The perfect description!
Like others, I continue to send my good wishes to you, Simone, and Scott. And I’ll continue to eat chocolate on your behalf because it worked yesterday! Anything for such a good cause.
I just wanted to let you know that I’ve been following your story and you and your husband and Simone are in my prayers. You are so brave.
Yeesh.
I don’t know how you stay so eloquent.
I? I would be at the bottom of the bourbon bottle.
My thoughts with the fighting flotsams!
Pam
go straight for the bourbon. dip it in cookies.
i feel for you on this multi-tentacled roller-coaster, but celebrate with every upward notch, every gift of good news.
I am thinking of you all everyday and sending you lots of good energy! Hang in there
My heart goes out to you. We brought home our 28 6/7 weeker a month and a half ago. The NICU is so hard. But when you hold your baby girl without any tubes or leads, all this will melt away. Lots of hopes and wishes coming your way.
thinking of you & your family. pulling for precious simone!
I hoping for the best for little Simone.
Enjoy that cookie and dip it in whatever you want!
I haven’t been exactly where you are, but I have spent a nice chunk of time in the ICU with my baby and I think that “wait and see” is pretty great. Doctors are supposed to be depressing downers, so the fact that they haven’t done that yet is a good sign. And kidneys? In my opinion, fickle bitches. Ours were barely working at one point, and within two weeks the kid could pee in his own mouth. Many did they scare us in the interim, though.
Maker’s Mark white chocolate macadamia?
Every appendage that can be crossed is being crossed for that strong and fiesty little girl.
If Simone hasn’t been eating, you undoubtedly have breastmilk frozen both at home and the NICU. You are continuing to pump. If you need the bourbon, pump, drink, dump the next 2 pumps OR keep them and mark them as “bourbon”.
You are going to be so surprised at how much milk you get saved up over time! The occasional drink or sushifest doesn’t make a dent. Go for it. :)
Thinking of you and Simone today.
Good news, sounds as if Simone isdoing better! Hopefully the kidneys will come around. It is probably a temporary problem. Fingers are crossed for you and Simone!
I keep refreshing your site for news of Simone. Although I’ve never commented, I have been reading your blog since I stumbled across its link via Julie’s. Since reading of your plight, you have been in my thoughts constantly.
Love from the UK.
Honey, you deserve a lifetime supply of chocolate-and-bourbon cookies.
Rooting so hard for you all. xo
Please be ok.
Bring the drink on. Alexa, Scott and Simone - you all deserve a shot.
Thinking of you all everyday - Lots of love.
I have been away for a couple of weeks, so I really just wanted to let you know that I am still here and still rooting for all of you.
Still praying for you and holding onto that persistent, stubborn, ballsy hope that everything is going well and will go well.
Can’t stop visiting to see if there’s an update. I found your site a few weeks ago and you and your family have been in my thoughts ever since.
Holding out hope that things are continuing to improve…
Also came to your site recently via alittlepregnant. I’ve been thinking of you daily ever since, and sending every good wish I can.
I’m horribly late, but Simone, you and your husband are still in my thoughts and prayers.
And (again, really late) she is absolutely beautiful.
I hope things are continuing to go well Alexa. I still pray for Simone, and you and Scott. :)
I keep checking too. It’s been five days. Hope all is well.
Thinking of you today. Hope things are continuing to go well.
Tonight is the first time I’ve gone back to the beginning of your story. If only Barbara Walters knew what you and your darling baby have been through, she’d interview you for sure. You are one of the most talented writers I’ve ever come across, and I won’t let another day pass without checking in on you and on her. My fingers are crossed that the next post will bring happy news. Thank you for sharing your story in such beautifully honest posts.
Thinking about you all and hoping for the best.
A whole post with pictures, deleted?
:(
My bloglines shows the new post but I see you’ve taken it down…but I just wanted to tell you how beautiful Simone is. She has a very grown-up nose already. :) And you are a wonderful mama.