Six Sticks Of Butter | Scarlette's Story

Today is World Prematurity Day and I am reposting what I wrote last year in honor of all babies born too soon
You can go into your kitchen, open the refrigerator, remove a few sticks of butter and place them in the palms of  your hands.

That’s what it feels like to hold a one pound, eight ounce baby. The equivalent of six small sticks of butter.

You only have a fleeting second of it, when a nurse instructs you to cup your hands inside the isolette just inches from the bed and gently lifts a tiny baby into them as she quickly changes out the bedding. The whole exchange takes place in less than a minute and she’s gone again, the lid shut, the cover draped and you’re peeking under a corner of it through a thick plastic wall at your daughter, praying.

She will be a month old before you are allowed to hold her.

She’s chasing a little boy and girl at story time, weaving in and out of the shelves of books, her raspy, high pitched giggle floating across the room.

She is much, much smaller than them. We are talking, the moms, about ages. Both of their children were born in the month she was due. February, they say. November, I reply.

And there they come, the questions. Because she’s so small. Smaller than the 7 month old who crawls towards us. Smaller than the one year old toddling after them.

I tell her story.

I wave my hand “But she’s doing wonderfully now. We are the lucky ones.”

I lie in bed later and think of my hands.

Hands that reached for her from an operating table when they cut her from my womb fifteen weeks too soon.

Hands that are wrinkled, damaged and dry at twenty nine from all the sterile scrubbing in order to place one single finger on my baby.

Hands that trembled as I dialed the number to my husband’s office to tell him that thirty days after she was born they finally, finally let me hold her.

Hands that held a book as I read aloud to her about a little girl and a secret garden over the shaking vibrations of an oscillating ventilator.

Hands that clung to his as a surgeon took a scalpel to her heart.

Hands that traced the outline of her face on my computer screen in the dead of night as I shook myself awake again to pump.

Hands that wiped tears from my eyes for one hundred and fifty six nights as I walked out of a hospital and left her behind again and again and again.

Hands that I balled into fists as I took deep breaths to steady myself and prepared to put a feeding tube down on my own.

Hands that held tightly to her medical team in deepest gratitude as we took her home.

Hands that dropped a dish as the apnea monitor alarms rang out to say she wasn’t breathing.

Hands that stretched her body over a ball and willed her to use her fragile, broken bones.

Hands that let her go in the direction of her daddy as she took her first steps.

Hands that grasp her little one in mine and remind her to use her library voice as she puts a finger to her lips and whispers “Shhh!” back at me.

Hands that casually wave when I express how far she has come, how strong she is when asked by an acquaintance at story time.

They get the short version, the one punctuated with numbers and gratitude that fits in the space of the conversation. She was so small and her story is so big. She was so sick and her fight was so strong.

But today is World Prematurity Day.

Today there time and space to share her story, to raise awareness, to lend some hope.

She is two years old and yesterday when I asked her if she saw the baby in the manger, she looked at me and signed “Jesus” and I pushed her hair back from her forehead and marveled at her and His great goodness.

This is the story with a beautiful ending and we are the lucky ones to be in it’s cast of characters.

I care not only because of what we endured but because I now count among my friends mothers who said goodbye to their babies this side of heaven. I am ever changed, marked by both tragedy and blessing.

My message is always this: Know the signs of pre-term labor. Education is the best tool. Trust yourself. Even if you think you just have first time mommy anxiety. If it feels wrong, make the call. Always make the call. It might not change anything. But it might change everything.

You can read Scarlette’s birth story here, a letter from the first day I was allowed to hold her here and the joyous account of her homecoming here and a post with awareness resources here.

(In the spirit of promoting awareness, I’d like to ask for you to consider sharing this post with friends and family on social media sites. I’ve removed the sidebar buttons from this post in order to minimize distractions and direct the focus to it’s message. Thank you so much!)

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Comments

  1. Dana says

    thank you for sharing! my sister was born at not quite 26 weeks and weighed 1lb 14 oz. today, she is a healthy, happy teenager! i will pass this on for others to read.

  2. Alicia says

    Beautiful, Beautiful, Beautifully written. My preemie born at 28 weeks weighed 1 lb. 8 oz. 13 in. They truly are miracles!

  3. Karalyn says

    You have such an amazing little girl…I remember following along in your journey as you would post updates about little Scarlette…I cannot even imagine going through everything that you both have…that all THREE of you have! It is amazing…God’s love is amazing. Thank you so much for sharing.

  4. says

    Kayla, So many of these thoughts resonate in my own head…the pictures burning into your mind, in the middle of the night, in the darkness of the living room, of your little one as you pump..video, just to hear her breathe…oh how I remember it so vividly…and the feeding tube…it’s so different to put it in your own baby and not the dummy in the training room…your heart near beats out of your chest as you get it down to where it’s supposed to be. You touched a sensitive space in my mind…I first commented on your blog when I was about 22 weeks pregnant…never did I realize I’d be joining you…thank you for such a beautiful piece on World Prematurity Day!

    • says

      I have to admit I’m a wee bit jealous that you got to practice on a dummy! They made me do it right on Scarlette! I’m totally going to suggest this to our NICU! No one ever wants to join the preemie club :( All my love

      • says

        At CHOP, they have a training center on the top floor, in a parent lounge, where you can go to relax, read a book, eat something (they always have beverages and fruit on hand) or use a computer. The training center holds courses for CPR, NG Tube, and other things…we took the CPR and NG up there…so you really get to relax and lay out all of the NG supplies, angle the babies head, see it go down based on your measurement, and even test for acidity! They have vinegar in the dummy’s belly! It was wonderful to learn that way. My husband and I both had to put it in and out of Maura before we could take her home and that was scary business!

  5. Brandy M. says

    I am a longtime lurker and I have been following your families journey since shortly after Scarlette was born. I saw a “Grow Scarlette Grow” signature on the TwoPeas message boards and decided to look up its meaning. That is when I came across Scarlette’s story. I am constantly saying to my husband, “Honey, do you remember Scarlette? I read her mom’s blog. Scarlette did this today or Scarlette did that today.” She is such a blessing and I am so glad you realize how precious she truly is. I hope she continues to grow stronger day by day! :o)

  6. says

    Two years ago, MY hands trembled in the early morning hours as I checked for a new update on Scarlette each day. So fearful of what I might find; so hopeful that somehow, by some miracle, that tiny, tiny baby girl would have survived another day. So full of dread when there was no post; frantically searching elsewhere to find any bit of information. I still can not fully imagine your pain, living through those agonizing days, weeks, and months.

    “She was so small and her story is so big. She was so sick and her fight was so strong.”

    It is such a big story. Thank you so much for sharing Scarlette’s incredible story with the world. xoxo

  7. Stephani in Canada says

    Thank you for sharing your story. I’ve said this here before; I only wish I’d seen your blog before I had my twins, prematurely in February of 2010. The information you share has helped so many others, I know this for a fact, for I have shared it with a friend who’d also been through micro-preemie land.

    Even if you help just ONE Mum recognize the signs and it saves a precious life…

    Still so very happy to hear how your Scarlette has thrived and beat those preemie odds we preemie Mums try to push out of our minds, for it seems like statistics are our entire life, long, long after they have left the NICU.

    She is one awesome little (big) girl and you are awesome parents for getting her where she is today! You are all miracles and this thanksgiving, you continue to have so much to be ever so thankful for.

  8. Heidi Gore says

    As I sit here in my work office with tears ready to spill down my face, I am struck with awe at God’s graciousness to each one of us. You have such a wonderful way of expressing yourself as you remember the amazing grace that God gave your family and the sincerely heartfelt hurt you express for those who have not been as blessed to take their child home. What an amazing gift you have been given–your writing skills AND your daughter. Thank you for pointing people to God with your life story. God is and can continue to greatly use you for Him and His glory!!

  9. says

    You and Scarlette have touched my heart. I hope I don’t come across as too stalkerish when I say I wish we lived near each other so I could actually know you both… I will be here to watch her grow for as long as you’ll continue to share her with us out here in internet-land. I wrote a little something about how much you both have impacted my life here: http://krysworld.blogspot.com/2012/11/meet-scarlette-and-kayla-aimee.html
    Thanks for sharing her with us.

  10. says

    I gave birth to 25 weeker twins back in December, and I feel like you basically summed up everything I could possibly say about it in one post. It’s so important for preemie moms to share their stories – both for themselves and for the preemie moms that come after them – and it’s wonderful to hear that Scarlette is doing well. All the best!

  11. J Desilva says

    Deeply touched by this post, you wrote this so beautifully. . . God is amazing! I don’t believe that you were lucky, I know that you were blessed!

    ~ How Great Is Our God! ~

  12. Laura says

    I have followed Scarlette’s story from the beginning (at Two Peas) and I marvel at how far she has come and especially what an ornery little squirt she is! I just love to check in and see what funny story you have to tell now! What a struggle with such a happy ending!

  13. Kat says

    Delurking to tell you that Scarlette’s birth story made me sob. I’m so grateful that she is doing so amazingly, and to you for sharing your story. I have pinned SO MUCH of your baby stuff!!

  14. NAtalie says

    I stumbled upon your blog thru a mutual friend a few weeks after Scarlette was born and have been a daily reader since. I have been so touched by your story and the candidness with which you share it. We also struggled with infertility and finally got pregnant after 3 years of trying. I held my breath til 12 weeks, then 25, and two days shy of 35 weeks my water broke and our son was born 21 hours later. We are so blessed that our “late preemie” has done extremely well and is now 6 weeks old. Great job raising awareness for premature babies.

  15. says

    Thank you for sharing this. Your story has touched me (and many others) in so many ways. I went in to get checked out last week because I was already feeling Braxton-Hicks at six months. Luckily, things are stable for now, but I’m trying to take it easy! Yesterday was also the anniversary of the day my cousin lost her preemie twin girls. So many people still tell her to focus on what she has, etc and shame her for grieving. It breaks my heart for her every time I hear another thoughtless comment. I don’ tknow if I ever do or say the right thing either, but I always send her my love. Sending you and Ms. S lots of love too ;)

  16. says

    So, so beautiful. What an amazing story, amazing girl, amazing mama. Thankful to have met you and to have read this as my very first Kayla Aimee story. xo

  17. says

    I loved the Animoto. Scartlette’s story is such a wonderful one. I am amazed by how far she has come. Thank you for sharing your journey through this life with us.

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