Dear Simone,

by Alexa on March 10, 2008

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

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Diane March 10, 2008 at 9:33 pm

Love to you and your sweet Simone – it will get better and easier soon – oh yes it will…..

Samantha March 10, 2008 at 9:36 pm

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

Amanda Hope March 10, 2008 at 9:38 pm

Awww! Happy one month! And also, EYES! Yay!

I hope this means her kidneys are behaving, for the moment?

April March 10, 2008 at 9:50 pm

Oh what a darling.

One month already? Wow. Thinking of you and yours.

Ariel March 10, 2008 at 9:54 pm

We love you too!

nadine AKA scarbiedoll March 10, 2008 at 9:55 pm

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.

Sarah March 10, 2008 at 10:04 pm

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

DaisyCake March 10, 2008 at 10:05 pm

I love Simone so much. I am so glad you posted!
Happy One Month Birthday Simone!

elizabeth March 10, 2008 at 10:13 pm

What an absolutely adorable child!

cori w March 10, 2008 at 10:15 pm

she is so beautiful. what a beautiful letter. we are here for you!

Christy March 10, 2008 at 10:17 pm

Simone, you’re very much loved! Keep up the good work little girl, random people around the world are cheering for you!

Jill March 10, 2008 at 10:21 pm

I’m glad Simone is doing well. The pictures are precious.

Becky March 10, 2008 at 10:34 pm

Oh she is GORGEOUS! And getting SO BIG. Good Girl, Miss Simone. You tell it like it is. I like that in a baby.

Marni March 10, 2008 at 10:48 pm

Happy tears for the update. Beautiful writing … to a beautiful daughter.

Stefanie March 10, 2008 at 11:02 pm

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.

Farah March 10, 2008 at 11:02 pm

Happy One Month Here on the outside Simone. You have a fantastic Mom. Keep up the good work!

Teej March 10, 2008 at 11:04 pm

Beautiful letter, and what a precious little person she is.

And YOU are a wonderful mother.

Patty March 10, 2008 at 11:06 pm

Happy one-month birthday, sweetheart!

Alexa, we’re praying for you and Simone both. You’re such a gifted writer.

shannymar March 10, 2008 at 11:08 pm

We love you Simone. You are so blessed to have such a strong and loving mother.

Meghan March 10, 2008 at 11:15 pm

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.

Cari March 10, 2008 at 11:20 pm

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

mpls guy March 10, 2008 at 11:52 pm

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?

All Adither March 11, 2008 at 12:01 am

She’s looking like such a big, strong girl lately. Go, Simone!

Marti (from Michigan) March 11, 2008 at 12:06 am

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.

Heather March 11, 2008 at 12:33 am

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.

Michell March 11, 2008 at 12:46 am

She is beautiful. Many positive thoughts coming to you and Simone that the vent will soon be a thing of the past for good.

Jess March 11, 2008 at 12:46 am

How lucky, lucky, lucky you are to have each other. It takes my breath away.

BEAUNAL March 11, 2008 at 1:16 am

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.

Annalien March 11, 2008 at 1:50 am

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.

Natalie March 11, 2008 at 2:08 am

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

Geohde March 11, 2008 at 2:40 am

Simone looks just beautiful

J

Mindy March 11, 2008 at 2:41 am

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.

Mauigirl March 11, 2008 at 3:20 am

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!

Kath March 11, 2008 at 3:23 am

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.

Serina March 11, 2008 at 4:43 am

We are so proud of you Simone! One month under your belt is a GIGANTIC milestone! Well done!

Orodemniades March 11, 2008 at 5:57 am

Happy Birthday, Simone! You’re a strong girl and we’re all pulling for you and wishing you strength.

Ani March 11, 2008 at 6:36 am

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.

Bittermama March 11, 2008 at 6:37 am

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

Heather March 11, 2008 at 10:35 am

What a wonderful letter. Happy 1 month birthday, Simone! Looking forward to hearing of many, many more!

Bon March 11, 2008 at 10:40 am

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.

Alex March 11, 2008 at 10:43 am

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.

Jennifer March 11, 2008 at 10:49 am

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.

Laurel March 11, 2008 at 10:53 am

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.

Kirsten March 11, 2008 at 11:00 am

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

jennifer March 11, 2008 at 11:07 am

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.

Mel March 11, 2008 at 11:12 am

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.

Kellie March 11, 2008 at 11:15 am

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.

Jennifer March 11, 2008 at 11:16 am

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!

Kristin March 11, 2008 at 11:18 am

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.

Kristin March 11, 2008 at 11:22 am

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…”)

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