I had a hair appointment on Friday, scheduled weeks before. It was to be my first midday outing away from the NICU—I am at the hospital approximately eight hours at a time, and haven’t missed a day yet. Not because I am particularly stalwart, mind you: I seem to have some post traumatic stress from my trainwreck of a pregnancy, and staying focused on Simone keeps me from being dragged into a pit of overwhelm at all that has happened since January. The present is difficult enough to manage without piling on the tragedies of the past, don’t you agree? Perhaps this makes you think of a certain river in Egypt, but I like to think of it as knowing my limits. All the same, it seemed like it might be time to get out a little. March is one of my favorite months. It isn’t the most temperate, but after a Minnesota winter, a sunny 40-degree day with the birds singing and the snow making a rushing sound as it melts into the gutters makes me feel stupid with hope and relief.
Friday morning Simone had been on rated CPAP since the previous afternoon, at the maximum pressure settings. Her blood gases were not encouraging, and it was decided that if they did not improve, back on the ventilator she would go. The doctors stressed that this wasn’t the end of the world, which assurance I waved aside. End of the world? Please. This wasn’t on the penultimate stretch of the world. Setbacks like these don’t even feel like setbacks anymore, so great is my joy that nothing new has happened to send us skittering out of orbit. The first time they tried Simone on CPAP she lasted 30 minutes; this second attempt was such an improvement that I already considered it a roaring success. So I left for my appointment as planned.
At the salon, it was strange to sit in the lushly appointed waiting area and do nothing, with no monitors to monitor or alarms to alarm me. I sipped my tea and watched the fire in the fireplace, both exhausted and slightly exhilarated to be out in the world. I thought about Ames. I don’t think I had realized what distinct personalities babies have until I had Simone, and it makes me wonder what he would have been like. I slipped a little towards melancholy, and then my stylist collected me and led me to her chair.
Just over two hours later I walked back into Simone’s room, refreshed and sporting a head of shiny, coddled locks. She was being reintubated, I could tell because she was outside of her isolette, a nurse, nurse practitioner, and respiratory therapist clustered around her. They all looked up when I entered.
“You might want to step outside,” someone said. I ignored them; I had seen Simone intubated twice before; this was old hat. I remember putting my coat away and thinking it was too bad she hadn’t managed the CPAP. And then I began, slowly, to notice that something was wrong.
The nurse bagging my daughter was doing so with unusual rapidity, and the practitioner had a look on her face I couldn’t place. I realized it was fear, and then I saw Simone more clearly: pale, bluish, and floppy. My eyes shot to the monitor, and I heard my blood whooshing in my ears at the sight of her heartrate. It was 49. Where Simone’s breaths should have been was a flat scrolling line, and despite the frantic puffing of the manual bag, her oxygen saturation hovered in the 30s. It wasn’t going up.
“You should step outside,” someone said again. I felt a swell of panic. What the hell is going on here? I wanted to ask, but I couldn’t speak. The practitioner was explaining that the first intubation attempt had failed, but because they’d already given the paralytic drug, Simone’s chest wall was too rigid to bag effectively. Puff, puff, puff, went the bag. I wondered if I should run into the hall and start screaming for help. Simone’s pale lavender arm wobbled as they worked.
So this is how it will happen, I think. This is it, right now, the moment my baby dies. I think I am going to faint, but instead I start to cry. The nurse shakes her head grimly and asks whether she should call someone.
“I need to get that tube in,” says the practitioner, and she begins her second attempt at intubation. Simone’s head is pulled back, and I look from my silent baby to the monitor, where nothing has moved. A nurse puts pressure on Simone’s neck and then the tube is finally in and they connect the bag to that and puff some more.
“Her heartrate’s coming up,” says the nurse, as it jumps suddenly to 78 beats per minute.
In seconds it is all over, and I keep my voice calm, asking the practitioner sensible questions about oxygen deprivation and pretending not to notice the tears still slaloming down my cheeks. She assures me that there will be no damage: after all, the entire process took about ten minutes. It only seemed like forever.
Afterwards I stood next to the isolette and held Simone’s cold hand while she slept. Then I leaned against the sink, wanting nothing more than to pour a bracing finger of scotch and gulp it down, like they do in the movies after receiving an unpleasant telegram. Looking in the mirror, my new hair was like a slap in the face. Mom Reads Us Weekly as Child Fights for Life! Or maybe Foiled Again: Baby’s Death High Price to Pay for Subtle Highlights.
I remind myself frequently that everyone has to take a break sometime, and that my presence isn’t required to keep Simone safe. I will never have more qualified babysitters. Even Friday, the situation was not as dire as it appeared—they could always have given her a tracheotomy: hell, I’d had a pen in my purse. I know that all of this is true. And I know there is a lesson here other than never, ever get your hair done, but I think I’ll grow it out anyway.
{ 180 comments… read them below or add one }
← Previous Comments
Next Comments →
Oh, I’m so glad that story ended like it did. I am also the mother of a NICU baby, who is 33 weeks now, born at 31, so his road has been easier. I was in the hospital on bed rest for nearly four weeks (six days at home in the middle). You and your daughter and your family will get through this, just as we will. I’m sorry any of us should be able to relate to one another because of these circumstances. I will be thinking of you and your strong little girl.
Oh, of course something awful would happen while you’re gone. Just to make you feel guilty. Welcome to motherhood.
we used to sneak a flask into the NICU. No lie.
I want to say “hang in there” but I feel like that would just conjure images of a kitten hanging from a tree on bad glossy paper.
You’re doing great. Simone is a tough cookie and she is damn lucky to have a mama like you.
JESUS CHRIST.
I just want to gather you up and hug you tight. Seeing as how you don’t know me, this would freak the hell out of you, no doubt. But I still want to.
Alexa, you are amazing. And my NICU used to encourage me to go away and take some time. I went to a wedding about a month into my Matthew’s stay. He was scheduled to come home the next day. Instead, he had a giant brady down to 20 or something horrible.
((hugs)) I’m praying for your sweet girl, you, your husband, and your sweet boy. Always.
Intubation is always a skill that should be practised with backup strategies. It technically difficult and risky. Especially if you’ve paralysed the patient, as you found out.
I’m so glad it ended well,
J
I am very relieved to hear that Simone has toughed out another crisis. She is a very strong little girl! She’s going to give you hell in about 15 years…
The grace and humour you approach your challenges with astounds and inspires me. You’re doing a great job in a tough situation, be kind to yourself if you can…
I am perpetually amazed by what people are able to endure. At the risk of sounding totally creepy, I wish i could have been waiting out side the room for you.
Hang in there.
It’s not your fault, dear. You need time to get your hair done and just breathe for a second. None of that changes your love and devotion towards Simone. And I know you know all that but sometimes it’s good to hear it again from someone else.
Much love, dear.
Oh that’s terrifying. I’m so sorry for all that you’re going through.
Although I am sure the guilt would suggest otherwise, even if you had been there rather than stealing a few precious moments for yourself, you couldn’t have prevented it. That is the harshest, worst reality I’ve ever learned; that that is what motherhood means. If someone had told me how heart-wrenching that part would be, perhaps I would’ve left motherhood alone after four failed pregnancies instead of striving for that fifth, most miraculous one. Oh but then, then what I would have missed.
In the meantime I wish you all the love and comfort and gentleness the world has. I pray for you and for your wee one. I wish I could magically make it all right for you. Consider this one more blessing of the hundreds that are coming for you and Simone.
Holding you from afar. I wish this were easier for all of you. But it would seem that Simone is a fighter and she’s got a lot of people pulling for her and fighting with their prayers for her. And you.
oh man, how terrifying. i’m sorry you have to go through this.
Alexa, honey, do you have a family member who can stay with Simone during your “regular” hours at the NICU if you have to go out? My sister was lucky enough to have me, my mom and my dad take different “shifts” with her during the day so she was never alone. The few times she had to go out, she had someone to keep in almost constant cellphone contact with until she got back. Yeah, I know the whole point of taking a little break is to clear your mind of the NICU, but some moms can’t do that–and it creates more anxiety. I hope someone can come and support you.
I am praying for you and our girl Simone and all of your family, and I am sending much love.
The guilt is so consuming. I used to hate calling in the morning for a status update, because I was afraid I was going to get bad news and it would be my fault for not being there overnight. Never mind that when I was at home I was trying to get the nursery ready and recover from being in the hospital for 3 weeks and pump milk every time I sat down.
Try to go easy on yourself. I had a bunch of nurses tell me that if I felt like doing it I should take a day off. Our stay was short enough that it didn’t become an issue, but I might have done it. I hope your hair looks fabulous and that your next try with CPAP is even better than the last one.
Oh, honey. I’m so glad that Simone is okay — and that you got your hair done. I know it feels like the most callous thing you could have done right now, but it really, really wasn’t. You need care, too, even if it’s just a couple of hours to relax and feel pretty. This whole thing was quite firmly Not Your Fault. You are and will continue to be a wonderful, awesome mom. Give yourself a teeny, tiny break, please.
Now, see, you should’ve gotten a pedicure or a facial in addition to the highlights, because then you would’ve come back to the NICU when the day’s drama was over with. I mean, neonatologists and neonatal nurse practitioners run into difficult intubations all the time. They keep at it, and next thing you know, the tube’s in and status quo returns.
When my son, who turns 8 next month, was in the NICU, we were lucky and had no big scares—just the occasional apnea/brady event that delayed his parole. But the nicest, sweetest thing my dad ever said to me was something he said in the NICU: He called me a “super-mom.” I don’t know you, Alexa, but you’re 100% super-mom too. Even when tossing your head back, swigging scotch, letting the fluorescent lights illuminate the subtle highlights just so. Super-mom. (Not like those pansy-ass moms who never have to grapple with such stress and fear. They don’t get to wear the cape.)
Oh, Alexa. Some time to yourself was a right thing to do. How terrifying, the scene you returned to. I am so glad Simone is alright and that you let us know beforehand that she is alright. And as others have said…what happened had nothing to do with your decision.
I am so glad she is OK.
Holy SHIT!! I need to get the lump out of my throat! I knew from the spoiler alert that things turned out okay – but that was scary! You are SO brave and strong and so is Simone. I check in every single day to see how she is doing and I’m always over the moon to hear that she’s rollin’ along. But please, go easy on yourself Alexa. You have been through SO much – you deserve your haircut and whatever else you decide to do to pamper yourself! As mothers we will naturally do everything in our power to keep them safe but bumps, scrapes, and tears will happen anyway. Just wait till some stupid boy breaks her heart – oh wait – we’re talking about Simone here -she’ll probably kick his ass instead!!
Oh, Alexa, this was so wonderfully, beautifully written that I didn’t realize until the end of it that I’d been holding my breath the whole time. I can’t wait until Simone can read these amazing entries about the first few weeks and months of her life, and know that you were there: you were always, always there, all along.
Oh Alexa, I’m so sorry your first time away ended the way it did. I can’t imagine how this makes a person feel.
But let me tell you, I had a relatively healthy, albeit small newborn and the first time I left him, to go out and buy diapers, I was terrified about what would happen when I returned and I guarantee when Simone is healthy and at home with you and you go out to run and errand or get a pedicure or whatever, you’ll feel the same way. Don’t let this episode color everything else and remember you are so very normal and Simone is doing wonderfully all things considered.
Thinking of you on a daily basis.
Oh my word. I’m the (proud) mother of a former 30-weeker. He is nearly 6 years old now and he’s fabulously above-average in every way (reality = totally NORMAL). His NICU experience, which was relatively mild; regular vent and oscillating vent, CPAP, Grade 1 IVH that resolved.
I agree with the previous post that said “Motherhood is not for the faint-hearted.”
I’ll add another glossy poster with wide-eyed kittens image inducing “Hang In There.”
You and Simone are in my thoughts.
it is a brutal ride, the one you are on, and the magical thinking of hairdos and panic and “this is how it happens” is normal, except that you tell it so freaking amazingly that my heart is in my mouth and tears are in my eyes for that ten minutes/lifetime you endured, standing there afraid.
and, can i say the title wins my favourite ever blog title award? or is it still too fresh to say that?
wishing you safe home with Simone, and soon…and like Kate said, with Ames-in-heart.
You hung in there with Simone when you could’ve run screaming from the room…please don’t ever beat yourself up, even in jest. You are Simone’s Mama & I’m proud of you!
With all my heart,
Julie
Another lurker and recovering NICU mom here. Just wanted to tell you that you will come out the other side of this thing scarred and bruised, but stronger than you ever thought you could be. My daughter is 18 months now-and strong, beautiful, sweet, kind, and SMART, no lingering evidence of our harrowing hell developmentally (except she is still not on the weight charts). I believe our relationship got a jump start with all those hours being with eachother at the hospital. every day. I think she knew I was there, somehow. And that made a difference.
The last (but certainly not only) heart stopper-complete with blood infection and a couple of transfusions (with enough bradys and desats to make me not sleep or eat, just sit there, worrying)-when I looked like hell, my favorite nurse/shrink told me, “you’re no good to her if you get sick or worn out from not taking care of yourself”. She was right. And you are right to leave sometimes and take a break. You have to. We worry that if we leave, they will die. We think if we stay, they will make it. But, what will happen will happen. One day, you will walk out of there with your tiny girl (it’s a magical day when it’s YOUR turn to do the carseat test and the 12 hour hospital discharge tests!!), and you’ll realize she wasn’t as fragile as she seemed.
Your readers will all rejoice with you on that day, but for now it’s the hard walk. Just keep breathing, and know we are all thinking of you and your family.
I found your blog through my Google reader and I just wanted to come by and say hello. I have been reading through some of your past posts and, of course, crying at work.
Simone is the most beautiful thing I have ever seen, and I just know she must carry a bit of Ames’ spirit with her as well. I am so sorry for the loss of your sweet son, and I will hope and pray every moment for your strong, beautiful daughter.
I can say, and I hope you don’t find this offensive or presumptuous, that I truly believe Ames is with you in spirit all the time. I also know he is not alone up there in heaven…
Hang in there and just keep up the fight. I’ll be pulling for nothing but GOOD NEWS.
Good God. You are amazing Alexa. I felt ill with fear just reading that (and I’d already skipped to the end so I knew that Simone is ok).
Thinking of you and your little family all the time and sending positive thoughts into the ether…
Sometimes it’s hard to comment because it feels impossible that any string of words I could put together can help you guys right now. But I know it must help to tell the story so I hope it helps that we’re out here bearing witness. Shaking my head again in awe of your incredible coping skills, Alexa.
How is your husband holding up in all this? You don’t write much about him. I hope he’s supporting you.
Thank God everything turned out all right. As the old saying goes, “It’s always something!” But don’t feel in the least bit guilty about your hairdresser appointment! You deserve some time for yourself (in fact, I highly recommend a massage next time as well!). I’m so glad Simone is OK. Hugs to all of you.
Hi Alexa,
This is just a note to say that in the few weeks you’ve been eligible, you have been selected as MOM OF THE YEAR in my books.
I am so proud of you, of Simone, of the team of people that surround her and will her on to fight.
She is perfect and beautiful and I hope she takes after her mom in character. She is one lucky girl to have you.
We think of you often in this house.
Much love,
erin
I agree with closing comments on the post after this. But I am afraid,I just can’t keep my mouth shut. Your baby is very beautiful. Those uninformed, unintelligent beings are sad to behold. Let’s let karma bite them in the ass. Hard.
Love, hope and prayers to all of you this Easter weekend.
Hi, I have never commented before but I have been following Simone’s journey for the past month and I wanted to say that those people who commented on your beloved daughter in whatever site you wrote about in the next post are pretty horrible. God forbid they ever have a parent, child, friend, or pet need medical help – can you imagine? Sorry, Gods will that you got hit by that car. Just roll over and die already!
Anyway, as a mother and a human being, I am rooting for you and Simone!
I can hardly contain myself over your new post. You have got to be kidding me. You’ve got to give us their site address. I want to go over there with burning torches and ropes.
Hugs to you from afar! Now I see where Simone gets her fight from.
Hi, Alexa. I’ve been following your and Simone’s story…I just wanted to say that you’re doing an amazing job both as a mother and as a writer.
Simone is a lovely baby. I’m so sorry you had to see some sick f*ckers co-opt and twist your story in such an ignorant fashion.
You obviously have a lot of readers who appreciate your sharing this unbelievably difficult experience. Thank you.
simone is beautiful, sorry she is raising your blood pressure though.
I am a lurker, I am random.
I commend you. Do not let dumb people hold you down. I pray for you and Simone every day. You are the strongest person I’ve ever encountered. Keep your head up.
Just wanted to delurk to let you know that for every unfriendly whatever who is silently reading this blog for her own obscure reason, there are half a dozen *more* of us who have been silently reading along and wishing you and lovely little Simone healing and joy. Truly.
*Standing and applauding after reading todays post*
Alexa-
You are an amazing mom. And Simone is so beautiful. I want to kiss her little cheeks, and stroke her stunning head.
You and Simone are in my thoughts and prayers so often.
Deb
Apparently others had the same idea I did..post a comment on this post about the next post.. which almost made me want to scream at those idiots at the top of my lungs!! Somehow stupidity is allowed to run rampant in this world and those you spoke of are of the utmost stupidity. I can’t even believe people would say things like that.. Anyhow– the rest of are praying for you Simone and following your story closely until she comes home..keep your head up and don’t let morons get you down..you’re doing all the right things for your daughter and deserve the best…
Best wishes..
I can barely imagine how your blood must be boiling after reading that hateful garbage about your beautiful daughter! I have never posted here before but I lurk and wanted to let you know that there are tons of lurkers who admire both you and Simone. She’s a gorgeous baby and it sounds like she is doing incredibly well.
I wish you would have gave out that address so we can give her hell!
Obviously the person that wrote that was in some desperate need of some attention and blog traffic. Maybe the fact that they must be pretty lonely seeing as how no one would marry someone as repulsive as her or let her bear any children (thank God!) she probably has nothing better to do than blog. Hopefully no one clicks on her adds and she’ll get evicted from her studio apartment for being unable to pay because obviously she is not intelligent enough to hold down a job. She probably gets off on reading posts and comments like this, which is sad. I hope she gets back on her medication soon and leaves people alone.
We love you though, don’t let things like that get to you. Simone is prettier now than that woman will ever be. You are a great mom!
Delurking to tell you I check your site almost daily to check on your family’s progress. Simone is such a beautiful little one and your strength and bravery are something to which I aspire. While I don’t know you, I pray for your little one.
Stupid people should be ignored.
First off, I’m a former infertility blogger now a mom of three and I have read your site for a while. A friend went through something similar last year (our children were born at the same time) and I know what she went through and I know it takes an incredible amount of strength to get through each day. She and I were discussing you the other day on the phone and I told her “I don’t know how she says so funny through all of this.”
Now, the sad confession. Several years ago a ch*ldfree friend of mine told me about this site and explained that people like this were why she didn’t like to call herself ch*ldfree. Understand that my friend will never change her mind about having kids, is not all that interested in my kids (although enjoys being an auntie to mine–within limits) and yet does not dislike children. In fact, she has a lot of emphathy towards them. Just no babysitting or diaper changing and drooling over cute newborns and that’s fine. I love that she doesn’t have kids and is free for lots of interesting experiences. Anyway, I occasionally read that site, although I hadn’t for a while. It’s sort of like a really bad trainwreck. I don’t know why I read. Oh yeah, it’s freaking weird and yet slightly fascinating.
The people on that site (and I will save you the time, because I know you don’t have it to spare) are basically horrible empty people. It’s kind of funny, because they spend a lot of time talking about how fabulous their lives are but then they talk about they’re crappy cubical jobs and living with their parents and the big thrill is going to Olive Garden (which, of course, is full of children who are awful). Occasionally one of them will tell the others that they gave the smackdown to a stupid “moo or duh” and it’s usually so unbelivable (because most parents would kill you if you spoke to them or their children in the way they say they do). I stopped reading the site because it really made me sad for humitity.
Please understand that these people do not in any way represent how most ch*ldfree people feel. I can’t imagine the type of serious mental problems and deep-seated anger that must drive some of these emotions. And frankly, when I was reading the medical comments on that blog, all I could think was how poorly informed they are–which is funny, because I believe the person who wrote some of the comments claims to be a doctor.
I didn’t put my blog up on this comment because I didn’t want to deal with the freaks coming over (actually, they slammed me once a few years ago and I was absolutely tickled over it it was so stupid). Hang in there. Best to your family.
I am so sorry you are not only having to deal with a sick child, but such horrible people. Your daugher is beautiful and I check to make sure she is well everyday. It is horrible that they can write about an innocent little baby like that.
Since everyone has the same idea, I guess I’ll chime in. Morbid curiousity led me to seek out this site and…I was sputtering. Someone above speculated that they have serious mental problems. As an experienced observer of the totally obvious, I affirm this diagnosis. The comments are breathtakingly absurd and can only be understood as the ranting of a lunatic fringe. Their punishment is the banal and angry emotional life they have embraced.
I suppose I don’t need a childfree message board to know that there are more than a few whackadoodles in this world — we will always have the myopic hatred of small and stupid people. I am truly sorry that in telling your story so beautifully and with such honesty, you have had occasion to encounter these particular wackadoodles. I hope it does not rob this blog of whatever therapeutic effect or creative release it provides you. I remain a supportive reader & admirer.
I am clearly naive, internet-wise. I had no idea people would write such horrid, horrid things about your beautiful girl and her dedicated, loving, tireless mother. Please know that there are many, many more people who have immense respect and love for you (even total strangers like me!!) than there are who waste their time with hateful thoughts about defenseless babies. I expect that those people torture animals too. I am so sorry that you were exposed to that – you need your energy for Simone and I am sad that you had to waste some on these lunatics. I am certainly not wasting any of mine on reading that crap.
Sending you love and good thoughts.
Oh Alexa! I am so sorry! I also had someone come to my blog to tell me hateful things about me and my babies. I had to go to no anon because of it, and it still upsets me when I think about all that was said. I am so sorry that someone did it to you, too!
You are doing an amazing job with little Simone. There is nothing like the stress an extended stay in the NICU causes to the parents of a baby. I am still reeling from it. You show strength and love each and every day you get up and go to that hospital. You show your strength just by getting up each day.
I hope you don’t let the people who want to cause pain the chance to get to you. It is hard to block stuff like that out, though. Every time you think of the hate, please remember all of the people who are cheering you and your family on…
hugs to you.
Yes, I am doing it too. My immediate reaction was, how fortunate that they choose to be childfree. That doesn’t mean they won’t be able to influence relatives of course, and any child unfortunat enough to come in contact with them, but at least that particular gene pool will become diluted. My best friend died in the tsunami and my blog was the thing that saved me, and one day I received an email from some woman telling me I was obviously a pathetic, miserable human being. I am sure she aimed to hurt me but she actually cheered me up. See, I was half out of my bloody mind because I loved him, my life is still richer because he was part of it and always will be, I think at the end of the day people like this make us feel grateful not only for what we have but also for what we are not. Can you imagine being like them, living life this cruelly, this obliviously? I felt a searing anger at first, who do these wankers think they are, no parent in your position should be subjected to any more rubbish, but what I really feel is pity, I suppose, I pity these poor sods and their smallness so very much, such desolate lives they choose to lead…
And this “but now I am concerned I may not be long for this world” made me laugh out loud. This sums you up I think, brilliant and warm and invariably funny despite all odds.
← Previous Comments
Next Comments →