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.
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I wish I could stand beside you, hold your hand, and let you lean on me for strength.
While I don’t usually pray, I will for Simone. She’s such a strong, brave little girl.
I found your blog a couple of weeks ago and you are so brave. I couldn’t imagine going through any of what your have. Your baby girl is such a fighter and we pray for her and your family every day.
God Bless
she made it, you made it and now it is in the past. little girl is strong. this all sucks and you are right to think that you are suffering from some post traumatic stress because i still have it from the NICU. if it is any consolation, it took five months to get my daughter off the vent and then another year to completely wean her off. she had major drops like that and as far as we know, no brain damage. she still sleeps with humidified oxygen but she can do it on her own- i hope simone is even stronger than mine was.
Forgive yourself. Have a little wallow and a brief self flagellation session and then forgive yourself because this guilt will only make you ill and give no benefit to the we one.
Don’t be too hard on yourself. When Simone is home with you and she grabs your long hair and pulls a batch of it out, you will wish you kept is short!
Honestly, be good to yourself. It is the best way to take care of your little miracle. Positive thoughts and prayers still zinging from me to you and yours.
I know you love old movies, so I hope you know what I mean when I say this is like “Mildred Pierce,” where the Mom has one modestly gratifying sexual encounter on the beach, while she’s away, her kid gets pneumonia and winds up in an oxygen tent.
But sex doesn’t cause pneumonia. And those old movies were the kind of fiction designed to make women feel guilty about not devoting themselves to motherhood to an impossible degree. I hope they’ve stopped making those kinds of movies. Because seriously, sex doesn’t cause pneumonia.
Anyway, I hope you can get a pedicure with a clean conscience. And I hope you and Scott and Simone can enjoy the springtime, when little things grow.
You have been through so much, so bravely and it is utterly unfair that you have this rollercoaster to follow the whole time. Please do not blame yourself, it is not your fault. It seems like every time you let a chink of light or normality back into your perspective, then things go wrong, but I can tell you that this is veil cooincidence, not you being punished. You need to get away, you need breaks, you have to at least go through the motions of a normal life or you will have a melt down. Don’t grow out your hair, don’t sit up and hold a vigil. Simone will be ok and so will you and Scott and there wil be ups and downs but it will be ok.
Lot of love
Even knowing the outcome I think my heart may have stopped. You are so brave. I also second the hair pulling out part. Or better yet, she could repeatedly try to feed you your own hair.
*sigh* I have no words other than you are an amazing mom.
keep up the great work
Even with the spoiler alert I was holding my breath. The poor little darling. And I completely understand why you want to let your hair grow out. But I’m betting that the next time you need to go for those subtle highlights, Simone will be at home with Scott.
I can’t imagine how you are managing all of this, but you really are.
I don’t know what to say, but it gets better. I Promise.
Despite the fact that the situation “wasn’t as dire at it appeared”, it’s still pretty traumatic thinking that your child is about to die. Going to that place is like being slam-dunked into a cauldron of boiling water.
A few years back I got a voice mail from my 18-month-old daughter’s babysitter telling me that she’d gotten into a bottle of Excedrin and they were on their way to the ER. Even though I figured out on the way to the ER that my daughter is such a picky eater she would have spat out the pills as soon as the bitter taste hit, I was STILL haunted by that momentary collapse of my entire world.
It may seem obvious, but the remedy is in telling the story. Tell it over and over again. After awhile it transforms into just that–a story more than an experience. Never goes away completely, but gets much, much better.
That little girl is feisty (and so is her mom)! I’m praying for you both.
Don’t blame yourself for not being there. We all need breaks. You have to take breaks or it will get so overwhelming you won’t be able to function. In time you’ll see it as a….scratch that. You will always remember it as a horrible terrifing experience that you never wish to relive. But it has nothing to do with your hair. Simone is in the best care she could ever hope for. Let yourself out of the worrying and occasionally take a moment for yourself.
You are an amazing mom, she is a fighter and someday this will be far in the past.
No one can say “don’t worry” because you will, and no one can say “don’t feel bad” because you will. It’s just so f*cking intense in there, so horrible, so unfair, so up and so down.. more emotional turmoil than lucky folk will ever know in their entire lifetimes.
You’re just doing the best you can. Sometimes that means you’re going to beat yourself up from the helplessness, even though you’ll know it makes no sense.
I just want so much for you all to be free of this place, home and healing, with Ames in-heart. xo
Oh Alexa. I want you to be through this, to a world where getting your hair done isn’t a dangerous activity and grounds for terror.
Much love. You’re wonderful. xoxo to you, Simone, Scott and Ames.
Something similar happened to my baby girl, they gave her pain meds before they had the vent ready and she stopped breathing. I walked in about the same time you did and it was scary as hell. My heart goes out to you.
I rarely left my girls’ bedsides. For the same reason as yours. I wanted to be there just in case. My husband thought I didn’t take enough time out for myself to recover from the stress of the NICU. He was right, but I doubt if I’d do it any different if I had to do it all again.
It will get better. You’re doing an amazing job handling all that has been thrown at you!
I never had to spend time in the NICU (she was early but only by 6 weeks), but spent countless hours in the PICU with my daughter. She has a primary immune deficiency (genetic) that has caused a lot of complications with illness and infections, many requiring hospitalization for days or weeks at a time. The first time she landed in the PICU, I had, heaven forbid, left town to work at a weekend retreat. She became ill the day after I left, and I was called the next day to meet them at the UofM children’s hospital (I was in Fargo). I made the trip in record time, and she pulled through, but I hovered over her for weeks and it was almost two years before I could leave her overnight without major panic/guilt attacks on my part (it did not bother her at all). But then I remembered that I always left her in the care of competent, caring, well trained adults who loved her very much and who she loved as well and felt pefectly safe with, and that in order to be the bestest mommy I could, I needed the occasional break or 24 hour getaway. Besides, my daughter started needing a break from me! (“Momma, are you sure you don’t have to go anywhere? How bout I go stay with Gramma or Uncle Andy tonight? Huh? Please? PLEASE??). She is now twelve and a half, and doing pretty well overall…still begging me to “take a break, already!” every so often, but also still trying to fit on my lap (she is already bigger than me, but will never be too big to be held).
It sounds like your beautiful little girl is brave and spunky and strong, and my suspicion is that she get it from her maternal unit.
Oh wow… I KNOW how scary that is, as it happened to one of my sons in the NICU, and you described it spot on – the nurses trying to get me to look away, the blue baby limbs, the ER-ness of it all, the way time slowed.
For days I didn’t visit him because I was convinced he would die and I didn’t want to get too attached. Isn’t that the worst?
He’s fine now, and 9, but so much of parenting is just holding your breath and praying.
My thoughts are with you.
You deserved that haircut, but you certainly don’t deserve what you went back to at the hospital. This whole situation is so horrible that words cannot begin to comfort. Still thinking of all of you…
My stomach is still tightly clenched after reading your post, and I knew, going in, that it would end okay. If people told you going in how terrifying parenthood would be under the best circumstances, no one would believe them, or no one would try it.
I can’t imagine how horrible that must have felt, but I am delurking to tell you I have been reading your blog for quite a while, and you are so amazingly brave, and a wonderful mommy, and it sounds like Simone is just like you, and she’s going to fight. Just hang in there. And remind yourself that you are doing the best you can, and you’re only human too, sometimes you have to get some air and remember that, in order to be strong for Simone.
Oh wow. It’s scary stuff.
Cut it all off, I think…
No. Really. You are doing great. It’s the best that you can do — and you know what? It’s great. And someday, when Simone is big and flipping her hair around with adolescent irritation, this story will be funnier. (Maybe.)
Have that bourbon shot, already. Yikes. Just remember had you been right there, with the long locks, it would’ve played out the same way — with them asking you to leave, you distressed, you crying, Simone pulling through. The same way. I hope you allow yourself some time to sleep and eat despite the fact that your hair will now grow to your ankles before you ever venture to a salon again.
Grow it out. You are perfect this way or that way. So is your little girl.
Wow. What an emotional rollercoaster. It sounds a drink of scotch would be a great thing to have. I am so glad that she is doing o.k.
I just wanted to tell you I think you are utterly and completely amazing.
Oh, I wish I could just make any of this easier for you. Your words, your writing style, both are elegant and beautiful. Your inevitable feelings of guilt for letting go even for a moment–less so. I am so sorry for the toll this must be taking on you. You are a rock, but even rocks have to allow themselves a little kindness.
Dear Alexa, what a horrible situation. I’m so sorry it happened, and so relieved it turned out OK.
I hope this doesn’t mean you won’t let yourself get a break every once in a while — even if I do understand that it’s a double-edged sword when dark thoughts are just waiting for a chance to crowd back in…
May things get better. May everything get better.
Oh Alexa. You blow me away – with your writing and your pluck. What a horrifying experience — even knowing Simone is fine, I couldn’t read it without tearing up.
And listen, getting out into the world is a good thing. When my mom was in the hospital, my dad kept up this constant vigil to the point of near mania. He finally confessed to me that he felt like if he left, took a walk, went out for a meal, it was a betrayal, or worse, some sort of jinx that would somehow by the deciding factor as to her health that day. Intellectually, he knew it was total bunk, but emotionally, when there is so little contol, the heart looked for something, anything, that would make the whole sitation feel less fraught with chance, mere hap. I understand the impulse, but girlie, you’re doing a great job.
That’s motherhood: insane guilt over something that we couldn’t have prevented, anyway. Glad that Simone is okay and you’ve survived your baptism by fire.
Baby’s death high price to pay for subtle highlights.
You know, I hope, that you are absolutely chuckalicious?
Just be glad you didn’t get a mani-pedi. I doubt they would have been able to save her then.
Just my opinion, but I don’t think neonatologists should wean “micro” premature babies off the ventilator until they are at least the equivalent of 35 weeks gestation. These babies who have arrived early, would not be breathing on their own if they were still in the womb. I think the NICU where Simone is should leave her alone until she is older and her lungs and breathing system more advanced. It WILL happen.
You deserved your outing Alexa, and you don’t need to feel guilty about it. Thoughts and prayers continue to come your way from me here in Michigan.
I am so glad to hear that Simone is doing alright! You are right in seeing the bright side of her last trial of CPAP. First 30 minutes, than 24 hours, maybe next time she’ll be ready to kick that old vent out into the hall while shouting some choice words.
The NICU turns every mother into her own worst critic. No matter how big or small the setback, we blame ourselves which is totally ridiculous. Try not to let this keep you from giving yourself a break.
How very terrifying for you.
Stay strong, Miss Simone. We heart you.
Oh, you poor woman. No-one should have to deal with the trauma that you’ve been through these past few months. No-one. And especially not such a nice someone as you!
There’s nothing that will make amends for your loss of Ames, and there’s nothing that will magically make you forget watching Simone struggle, either. I still cry from the shock & terror of the NICU 7 months on, and my little chap & I didn’t have it nearly so rough as you. BUT! there’s some big positives coming your way soon, because knowing such bad times makes the good times so very sweet. Delightfully & deliciously sweet. And Family Flotsam are definitely going to have some well-deserved happy times coming their way soon.
Perhaps give the counselling service a go if you haven’t already? It can help put some of the trauma to bed. I had the same wonderful counsellor all the way through infertility treatment, 3 subsequent miscarriages & our premature baby, and I’d have lost the plot quite magnificently without her.
Another week or so & Simone will be tearing down her incubator (I know you guys call ‘em isolettes over there, but it just sounds such a LONELY noun!) walls to start chewing your boobs off. She’s starting to look hungry!
I am a lurker — and an expectant mother — who has been reading this site for a few weeks. Your writing is so wonderful and honest. I check every day for news of Simone. Perhaps it is partly due to my own hormonal state (but mostly due to your talent, I think), but every entry brings me into your experience and I feel that I am there, enduring it with you.
I wish I could have been there with you on this day. I would have hugged and comforted you. I would have told you that it is not your fault and that your hair looks wonderful. I would have reassured you that Simone will fight on, grow stronger, and will be safe in your arms in your own home one day. That day I am sure seems very far off — it would seem so to me. But relative to the long and happy life that I feel certain awaits your daughter outside the NICU, it is very near.
All I can do is echo the support and admiration of your other readers — and thank you for sharing your story with us.
You know… of my 3 that were in the NICU, I seemed to handle this last one the worst. And, amazingly enough, she had ONE set back the entire time. I was so used to one step forward, 3 steps back, that when she didn’t have that kind of thing happen all the time, It totally freaked me out and I didn’t know what to think.
You had my heart in my throat through the entire post. I won’t repeat myself or any others like I normally do.
And yes, thank you so much for sharing your story. We’re still thinking of you! Give that sweet girl lots of hugs and kisses for all of us.
One day, you will be able to look back on these moments with some sense of detachment. I can still remember watching D. turn blue in the NICU, but I don’t feel terror squeezing my heart at that particular memory anymore. It passes, but it leaves you changed forever.
I continue to follow your life, and I continue to pray for you and for your family. If you and I were friends I’d offer you a stiff drink and a strong shoulder and I’d remind you that being there would in no way have prevented this horrible situation, and we all need to take a break sometimes, that we’re allowed to take a break sometimes. Allow yourself to feel bad for a bit, then remember, you were there to help her through this, as every battle she has fought, and every battle she will fight. You are a good mommy.
I am so glad you told us ahead of time that she was okay. I still cried as I read it.
Peace,
StacyG
I have been reading your saga with such sympathy for you. You are handling this challenge with such grace, I admire you.
Even without the kinds of challenges you have been facing, I have found that motherhood is one long exercise in guilt and self-recrimination. There’s always something I feel like I should have done differently, better. Motherhood is not for the fainthearted.
You and your family are in my thoughts.
Alexa, that sounds so incredibly scary and hard. I agree with whoever mentioned getting counseling… you used the phrase post-traumatic stress fairly lightly, early in the post, before the latest trauma, but I think it’s actually a pretty reasonable reaction to what’s gone on with you. Maybe it would help to get some professional care now, before Simone is home with you, to get a jump on the healing? Just a thought. Know that like the rest of your readers, I think about you all the time, and can’t wait to hear about things still getting better and better.
I am so sorry you are going through this, Alexa. And unfortunately I know that you will spend every waking moment in the hospital from now on. My 2 month old daughter had meningitis. When she was first admitted and we didn’t know the infection had gotten to the meningis (we just knew it was in the blood), I didn’t eat for two days. I felt like I couldn’t eat until I knew she was ok. Then my friend brought me a quarter pounder with cheese (my favorite) and I ate it – and it was so good. Five minutes later, they came to tell me my daughter had meningitis. It has been two months since and my daughter is perfect and I still have a hard time enjoying a meal. I feel like if I do, something bad will happen. So for the most part I eat enough to survive but not to actually enjoy. I know I will slowly work myself out of this just like you will. Something my therapist told me that has helped incredibly is that when we are in these situations, we lose sight of the fact that they are temporary. We dig the hole deeper and deeper cause we feel like it will go one forever. But it wont. It is a crisis and it will pass and you will have a normal life soon, with your daughter at home and you will be able to do something as mundane as get highlights or eat a quarter pounder without without the world collapsing. In the meantime, I am sending many good vibes your way. Hang tough. This too shall pass.
I can’t even imagine what you must be going through, but I wanted to let you know that there are people out there sending you lots of love and good energy! Hang in there Momma!
Simone really, really needs to stop scaring me like that. And you! Also you. I think Simone may just be throwing tantrums because I have not bought her a pony yet. I promise to remedy this as soon as is reasonably feasible.
I miss you, friend, and think of you all the time.
Simone: keep breathing. ok?
Alexa: you are a good mama. Remember that, even when you worry about having your hair done. And when all this is over, & it’s time to bring your healthy, chubby baby girl home from the nicu, give those nurses a bag of donuts. :-)
(and take home everything from the cart, including the unused nipples & bottles)
I am crying. Please keep fighting, dear Simone.
SimoneSimoneSimoneSimone.
My heart was hurting reading your post. You do need time to take care of yourself but you always worry and wonder about when you are gone. Simone–keep breathing and being strong and feisty!! Alexa–you keep being a good momma!!
One of the things you learn through the years of parenting is that you can never be there 24/7, and that sometimes when you are gone, bad stuff happens. Grow your hair as long as you want – I wouldn’t blame you a bit. But remind yourself again and again that while this incident and your giving some time to yourself were correlated, your hair appointment didn’t cause anything but some highlights. Bless you and your tiny fighter.
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