Dear Simone,

Saturday you were one month old. You nestled against me, one arm thrown companionably over my right breast, your feet pressing into my hand. When I spoke, your irises rolled toward the top of your head, looking for the source of my voice. Though I wish you were still safe inside me instead of running with the NICU’s fast crowd—digesting milk and developing a fondness for benzodiazepenes while your contemporaries bob lazily in their amniotic cocktail—part of me feels lucky to have these extra months with you. I would willingly give them up to ensure your health, but as that has not been presented to me as an option, I might as well enjoy this stolen time with my daughter of the softly furred shoulders.

Fingers

March 10th
On Thursday, my little gosling, the honking of your air leak had grown impossible to ignore, and your too-small breathing tube was removed. It was determined that as long as it was out, you ought to be given a chance to breathe without the ventilator, via CPAP. A hat was pulled onto your head and the attached straps used to secure a piece of tubing, a pair of prongs pressed into your nostrils, like so:

image

You were horrified. First we take a TUBE out of your THROAT, and then we strap some contraption into your NOSE? No. NO. Absolutely, a thousand times, NO.
You raised your hands and used them to push desperately at the tubing, all the while screwing your face into an expression of fury. More importantly, you clamped down with your chest, refusing to breathe and fighting every artificial breath the machine attempted to give you. Your oxygen saturation dropped, and then dropped lower still. Your nurse called for the practitioner and there was much sighing and headshaking by the respiratory therapist. You weren’t doing well, she said—snottily, I thought, fighting both my tears and an urge to force plastic tubes up her nostrils to see how she liked it. “Not doing well” was a phrase I had heard applied to you before, but this time it meant not that you were ill, but that you were failing, and I took exception.

It has been a long month for the both of us. I am nearly thirty years old, and there are nights when the unfairness of it all makes me want to lie on the floor and scream; at only thirty weeks, I thought you could be forgiven a fit of pique. While the nurses prepared for reintubation, I moved to the other side of the isolette and put my hands through the portholes to cup your head and feet. You were calming down, now, and taking a few breaths. I told you what a good job you were doing, in the same soothing voice I plan to use someday when helping you through things more complicated than breathing, things like bicycle riding and unrequited love. You began to breathe, breathe, breathe, and stop….and then breathe, breathe, breathe, and stop.
“You have to keep doing it,” I said, rubbing your feet to remind you.

Breathe, breathe, breathe, and stop…I massaged your toes, and could feel you thinking What, the lungs-in-and-out thing? I just DID that.

How exhausting it must seem: in and out, in and out, FOREVER. By now you were keeping your oxygen saturation in the low 80s, but it wasn’t enough, and the nurse practitioner disconnected the CPAP and pulled you from the isolette. She tipped your head back and swiftly slid a tube down your throat, larger this time to correct the air leak.

Back on the ventilator and doped up on Ativan and paralytics, your eyes drifted open. My good, sweet baby.

One Month

I promise you, it will get easier. All of this will get easier. It seems impossible, but someday your breath will be effortless, unnoticed. Someday we’ll both take it for granted. Until then, though, I will be right here, applauding your efforts and wishing I could do this for you. I suspect this is only the first in a long line of similar wishes.

I love you more each day, and happily you are to young to recognize that as a hackneyed sentiment. It is true, after all.
Hand
Love,
Your Mama

109 comments

  1. Samantha says:

    Bless her sweet little heart. Thanks for sharing the pictures — she is a cutie — oh so tiny. You are doing an amazing job at keeping your head up and staying positive for Simone. Take care

  2. A friend just sent me this post. I am crying. We also had a bout in the NICU with my first. He wasn’t a preemie, he’d had a stroke at full-term and was seizing as a result, but the anti-convulsants made him forget to breathe.

    They told me all kinds of horrible things. That he had CP (he doesn’t), that he would never be able to walk, (try to get him not to run now at age 3) and whatever else they had to to cover their asses.

    It’s hard to trust your gut sometimes with the monitors going beep beep and the air of doom. But try to find the quiet and listen to your heart. You are the mama, you know.

  3. Sarah says:

    Having wiped away the tears after reading this beautiful letter to your precious daughter, I just want to say thank you so, so much for sharing this time with us and pictures of your exquisite prize fighting daughter. Lots of love and kisses being blown your way from Perth, Western australia. xxxx

  4. Stefanie says:

    I obsessively refresh your blog. I’m amazed at your strength and inspired by every word you right. I’m thinking about your little girl and sending thoughts and hope that she starts breathing on her own in earnest very soon.

  5. Meghan says:

    It’s been a month already? Really?!? I was just thinking of you and Simone today, wondering what was going on but I figured no news was good news. Thanks for the update, we’re all pulling for the three of you.

  6. Cari says:

    Such a beautiful description of your moments together, it’s just heart-panging. Plus, love that little semi-transparent hairdo!

  7. mpls guy says:

    Sounds like your baby girl has some serious spunk. I’m thinking that you’ll be really aggravated by that personality trait when she’s about 17 months old. You know?

  8. Marti (from Michigan) says:

    In a way, I don’t blame her. That CPAP is an awful looking thing for such a tiny sweet face to bear. Thank you for your update.

    In time, she will learn to breathe and it will be second nature. What a beautiful baby girl.

    I will continue to keep Simone and you and Scott in my prayers.

  9. Heather says:

    Just the fact that they thought she was strong enough to try being off the vent is a great sign. I hope it helps you to know that there are a ton of strangers out there praying for you. It helped me! Simone will someday appreciate that you kept a record of everything. Preemies are amazing babies. They are robbed of so much, yet have more strength than grown men. Your Simone is amazing.

  10. BEAUNAL says:

    My tears while reading your post are for many reasons…mostly for the joy that Simone is the strong girl we knew she would be and all because her Momma and Daddy made her that way. God Bless You as you continue through this together.

  11. Annalien says:

    Wow, I can’t believe she is a month old already! She is gorgeous. I don’t have any experience in NICU matters, but she seems to be doing excellent to me. Such a little fighter.

  12. Natalie says:

    I have not posted any comments in the last few weeks as I have felt humbled by your strength and resilience. This post however compelled me to just say this: Well done the three of you. What a beautiful piece you wrote, and what a mother you have become. Simone looks like she has grown so much and despite never having met you, I feel quite proud of you! Much love, Natalie

  13. Mindy says:

    Sweet, precious little lady…she is in my prayers. I’ve been checking your blog every day for updates. No pressure!! Far more important things to deal with than your humble blog-readers. But thank you.

  14. Mauigirl says:

    So glad you posted an update – I was checking daily too!

    Happy 1-month birthday to Simone! She’s doing great. I think her not wanting the CPAP just shows she has lots of spirit!

    Thinking of all of you and hoping Simone continues to grow and flourish!

  15. Kath says:

    Dear Alexa, she looks so much bigger now! And how wonderful to see her eyes. What a lovely girl you’ve got there.

    That letter was beautiful. One day it will be one of her most treasured possessions.

  16. Ani says:

    Happy one month to your precious little girl! What a lovely letter to Simone. I hope she continues to get stronger and stronger each passing day. All the best.

  17. Bittermama says:

    Oh, look at that beautiful girl with her eyes wide open! She’s working so hard for such a young little thing.

  18. Bon says:

    ah, she is fierce, i think, and wise, not failing. you have a mother’s good judgement of her efforts.

    and she is so lovely and so full of promise tears sprang to my eyes looking at her.

  19. Alex says:

    Another obsessive refresher here. What a beautiful post. Simone is lucky to have such a strong, eloquent mother, and her mother to have such a strong daughter.

  20. Jennifer says:

    Go Simone, go! I have been checking back on a regular basis, hoping that no news was good news. She’s one tough little cookie, and you’re doing an awesome job. She knows, at some level, that you are mom and are taking care of her.

  21. Laurel says:

    Oh she is so beautiful! Simone keep growing, healing, and learning how to breathe. Alexa, I marvel at your strength and your ability to express your emotions. You both amaze me with each post. Keeping all of you in my thoughts and prayers.

  22. Kirsten says:

    YIPPEE – thanks for the update. She looks so BIG! And she is clearly strong…and talented beyond her age. Congratulations on one month!

  23. jennifer says:

    What a cutie!! Happy one month. I can’t even begin to know how hard this time in your life must be but you are an inspiration. I am thinking of you and wishing this time in the hospital will go by quickly and you can enjoy your time at home with simone.

  24. Mel says:

    You really are being a brilliant mom so I hope you pat yourself on the back and love yourself a little.
    She is a sweetpea and a very brave and strong little girlie. She will treasure this letter one day and make you read it over and over again.

  25. Kellie says:

    Simone, you are so beautiful and special and magical that even perfect STRANGERS love you and obsessively check on you every day. (Okay, several times a day!) Keep getting stronger. We’re all out here rooting for you.

  26. Jennifer says:

    Alexa, I swear she gets more and more beautiful with every picture you post! She is so lovely. And I agree with PP. She looks like she has grown so much! How much does she weigh now?

    Happy Birthday Simone!

  27. Kristin says:

    She is so beautiful! (I’ve finally gotten the ears out of my eyes long enough to type.) I’m in awe of her strength — and yours. Keep breathing — you can do it. Many prayers and good wishes are with you.

  28. Kristin says:

    Um, that’s TEARS out of my eyes. Not ears. That would be silly. If it makes you chuckle, then that’s OK, because you deserve it. Otherwise, I’ll be wrapping the shreds of my electronic dignity around myself and slinking away.

    Did I mention that Simone is absolutely beautiful? Is it just me, or does she look bigger and stronger? And thank you so much for the update — I’ve been refreshing and refreshing, checking the date (“It’s only been X days…her mom is very busy holding her feet and telling her how brave she is and making sure she knows that she’s loved very much. I’m sure she’s OK…please let her be OK…”)

  29. Tash says:

    Oh Simone, it takes such incredible strength, doesn’t it. To look at your mum, to fight off that thing they’re jamming into your nostrils (a fight which impressed the crap out of me, I might add — that alone shows you’ve got some spunk and sass in there! Yeah!). Just keep breathing. Keep breathing. You too, mom, keep breathing. Thinking of you all, with every breath.

  30. Cam says:

    Delurking to say that I too got here through A Little Pregnant a few days ago and now I keep coming back just to see how she’s doing.
    This post brought tears to my eyes. I have a two-month old myself and I’m here hoping that pretty soon Simone will be on her rocker all smiling and cooing and distracting you from your blog reads just as she is doing now. Happy birthday, baby girl. And keep breathing.

  31. Emily says:

    Sorry for the spike in your site counter. That would be me popping in every couple of hours to see if there is an update.

    You don’t disappoint.

    I love the sweet little fat wrinkles laced around her shoulders like a necklace. She is growing…bigger, stronger, more stubborn.

    Happy Birthday, sweet Simone. (Make sure someone gives you a cupcake!! You deserve it.)

  32. Anne says:

    What a wonderful post and what a beautiful baby. Is it my imagination or is our baby Simone fattening up?! She looks beautiful and to see her eyes open makes it all worth it. To know that your touch brings so much to her must make your heart overflow.

    Congratulations Mom, Dad, and Simone. You guys are awesome.

  33. thalia says:

    Oh Simone, at 30 weeks of course you are entitled to be a bit peeved at having to move those lungs all by yourself. But do try again next week and make your mummy proud, yes?

  34. Haley says:

    Delurking to say Simone is right. Breathing gets tedious sometimes! :) But I agree with everyone above, she looks bigger and healthier and it’s nice to see her eyes. I cannot say that I ever went through any of this with my child, but my heart still aches for you as a mother. And I rejoice with you on the good days, too. I hope there are more good days in the future.

  35. Betsy Bird says:

    Thank you SO much for this beautifully written update. I didn’t discover you and Simone until last night and I can’t tell you how much I’ve thought of you since then, wondering how things were going. You’re the first stop I’ve made on the computer today — I had to know if there was news of my tiny new friend and her miraculously talented mother. My deepest best wishes to both of you.

  36. Jennifer says:

    A month already? On one hand it seems unbelievable. On the other, it seems like you, Simone and your hubby have been through so very much in such a short amount of time.

  37. TB says:

    May the next month be immeasurably easier for all of you. Keep fighting Simone and Alexa and Scott. You’re doing beautifully.

  38. Kaylan says:

    Oh, hello, beautiful girl! Happy one month! Alexa, you’re doing wonderfully — a natural mama. Simone couldn’t be gently cuppped in better hands.

  39. TheHMC says:

    Aw… she’s so gorgeous :D.
    Huge hugs to you mom….keep hanging in there. I’m sure the nurses and everyone tell you that one day it will all be a distant memory. And as UNlikely as it might seem to you right now, I promise that it IS true.. and will all be easier eventually. ONe day you’ll look at her and won’t believe how she started out.

    They sure do have such a hard time with that breathing stuff. It’s hard being such a little baby sometimes!
    Many, many thoughts your way. And huge hugs to Simone!

  40. Sarah G says:

    Simone is so beautiful, c-pap is so odd for them at first my daughter had 2 blood tranfusions and a lot of on-off c-pap and she was born at 30 weeks. She will learn to do this, slowly, slowly. It won’t feel natural to her yet, but she’ll do it all of a sudden.
    Then one day you will walk in to see her and all of the tubes will be gone and you will see the whole of her lovely face for the first time and know you’ll be taking her home in just a couple of days. that day will come and it is so worth the wait. Enjoy your baby xx

  41. Newt says:

    I am thrilled to the earlobes to hear of all this great progress. Happy, happy one-month birthday, little warrior!

    Hope the next month is filled with joy and progress, and strength and healing and miracles. Grow, beautiful baby! Grow big.

  42. sarah says:

    You are wonderful for your special words.

    I have never been so moved reading something written for a living child.

    Beautiful girl.

  43. I have never been the type of person to read the last line of a book to see how it ends, but I have to say, these last posts have me doing just that. Happy 1 month, Simone! Keep up the good work and tell those doctors and nurses to cut you a break, already. We all think you’re doing a great job!!!

  44. My first post here. Hi!

    I had to delurk to let you know how beautiful this post (all of them, really) is.

    This, I know, will be the first of many letters you write to Simone on her milestones throughout her long, happy life.

    She is the sweetest little bundle and I wish her, you and Mr Alexa a million little miracles!!

  45. Lynn says:

    Absolutely beautiful – the words and your daughter! Happy Monthday! Stay strong baby girl! Your mom is right – some day you will take breathing forgranted – but until then – we will all be on the sidelines cheering for you!
    ~Lynn/PA

  46. AussieAndrea says:

    Congratulations on your one month anniversary Flotsam family!! Thoughts are with you… keep on going Simone and hang in there Alexa and Scott…

  47. Rebeccah says:

    If we could breathe for both of you, you know that we would. As it is, all we can do is gasp when we hear from you and sigh with happiness when we hear how well you all are doing.

  48. Priya says:

    Alexa, you and your daughter are clearly a of a superior breed (thought and written without irony, dear). Congratulations to you both! We’re all so proud.

  49. Star says:

    I never know what to say that hasn’t been said many times, but I check back almost every day to see how you and Simone are doing. So glad to hear that she is doing well. Can’t believe it has been a month already! She will be ready to go home before you know it. You have been brave and amazing throughout this time. Simone couldn’t ask for a better, more devoted mother.

  50. Lisa says:

    Oh Alexa. Reading your post, seeing the pics of your beautiful girl, all I can think is how lovely you are. How lovely your little girl is. I think about you all the time, and constantly send prayers and positive thoughts your way across the ocean.
    Much much much love coming your way from a stranger.

  51. Susan P says:

    Another delurker from A Little Pregnant.

    Our guy was a 31 weeker-CPAP- blood transfusion kind of kid. It took him a while to figure out how to suck, swallow, and breathe without turning blue. He’s now 2 weeks shy of 2 years old and is totally amazing. He can now suck, swallow, breathe, and run around shouting “No Bath, No Bath” all at the same time.

    Sending you and your beautiful daughter lots of love and best wishes for deep, cleansing breaths.

  52. Jill says:

    I think about you and Simone often. You have so much and you’ve lost so much. There are many, many prayers and good wishes going out to you.
    Just think, someday Simone will be a big girl and she will be off at college. Living in a dorm and free to come and go as she pleases. I’m at that point now and I panic sometimes wondering if my little one (so huge now! Much bigger than me!) is safe. I worry about car accidents and crazed gunmen and thoughtless girls who will break his heart.
    It never gets too late to long for the days when they were safe inside you, where you could reach down and pat them whenever you felt them moving.

  53. Mary Ellen says:

    Oh, the fuzzy shoulders! I remember them. It does go away. They start to look less like the children of chimpanzees and more like babies, and someday they might even get fat!
    I think about you and Simone often. She’s beautiful. She’s doing very well. So are you!

  54. pinn says:

    I tear up everytime I read your blog. Beautiful beautiful post. You and Simone are in my thoughts.

    Happy one month, baby Simone!!

  55. Vixen says:

    An amazing story from an amazing lady with an amazing child. Your love and strength is so obvious, and just what Simone needs. Keep fighting!

    As always, positive thoughts and prayers on their way.

  56. Jo says:

    Hi there – This post has me in tears. I found you through Karen, and I am rooting for you guys. What a story; what a love you have for your girl. I hope that every day finds her stronger. (Hugs)

  57. Julie says:

    Happy One Month Birthday Brilliant Simone! I love seeing new photos of you sweet and strong baby girl!

    Remembering you Amazing Ames with great love.

    You have my best wishes and love…and my humble thanks for the regular reminder how miraculous babies (and breaths) are every time I read through your posts. Simone will never know quite what you’re going through unless she decides to take the plunge into Motherhood herself…but all the Moms & Dads out here are holding our own breaths along with you.

    Take care,
    Julie

  58. Laura in L.A. says:

    So good to hear from you, Alexa. I am so happy that our Simone is making progress. (Work computer won’t let me see the pictures–can’t wait to get home!) Love to you and our girl and all of your family–I pray for you every day.

  59. kimblahg says:

    Yes, we tried extabation over and over before it stuck- they really hate c-pap and I can’t blame them.Hey, at least she is a fighter and let’s them know when she is mad- that is actually a good thing.Go little fighter!

  60. Dani says:

    Remember that our sweet little NICU babes are great fighters! I remember watching Jeffrey flail his little arms around and do leg lifts in his isolette. It comforted me that he was fighting his way through the problems.
    She’ll get through this and you’ll get through this.
    Much love and prayers!
    PS. She is gorgeous!!

  61. Megan says:

    Your site has touched me so much! No kids yet, but I am involved with a kids hospital, as is my mom, and my sister is a NICU nurse (different hospital). I told my mom about you tonight and she said that Simone has the best odds of doing well. She said that at our hospital, for some reason little girls do better than the boys. Both of which have a great outcomes, I’m not trying to discourage little boy moms…I’m just saying that I’m excited for you and want you to have every bit of joy out there!

    (disclaimer: no science here, at all. I’m not clinical and my mom is (sorta), but not currently acting as a nurse, dr. or otherwise, but this is what she’s heard)

    Gawd I feel like I am surely going to get killed for saying what I did. Keep in mind, I’m a peon, and I see premature babies of all varieties doing GREAT every day. GREAT, I say!

    Now just feel stupid,

    Love to you and all the BabyMommas, and Daddy’s!

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