Hand to Hold's Official Blog: Written by Parents for Parents

Advice For Parents Of Preemies: Learning To Ask The Questions

Advice For Parents Of Preemies
My daughter was two months old on the day that I discovered that I had missed her first bath.

And her second.

And her third.

And I don’t actually know how many others because I was too embroiled in my emotions, simultaneously outraged and heartbroken, to ask.

Scarlette was born at twenty five weeks. At one pound, eight point six ounces she fell into the category of “Micro-Preemie” and she was fragile.

Her skin was stretched paper thin and a web of raw nerve endings, having never completed their development in the womb, left it raw to the touch. So we didn’t. Touch her, that is. Not in the way that nature and nuture propel you to touch your baby, with a gentle stroke against baby soft skin.

Micro-preemies require a harshness befitting of the world they entered too early upon exit from the comfort and shelter of a mother’s body. We could let her grasp our finger, or cup our hand firmly and fully around her legs, exerting pressure that seemed at odds with the frailness of her body. A soft touch would cause alarms to ring out as she lost her breath, her undeveloped nerve endings unable to cope with the sensation.

I was a mother who could not caress her child.

We learned about touch times, when a nurse would lift the lid on her isolette and turn the lights on dim so that we could see our daughter as she took her vital signs. For one entire week I watched as other people changed her diaper and took her temperature and gently re-positioned her body in the bed and did my job while I sat helplessly by, pumping and praying and singing whispered songs.

I wanted to do those things.

I wanted to mother my child.

I did not know that I could because no one offered.

It wasn’t the fault of anyone in particular. They are busy, nurses, saving tiny little lives and each assumed that someone else had told me that I could be involved in the touch times. That I could change her diaper, the one that was smaller than my credit card. Or take her temperature with the standard issue thermometer that was larger than her entire arm.

I did not ask because I did not want to be an annoyance and also because I knew how sensitive to stimulation she was. I didn’t want to overstimulate her and make her uncomfortable. I assumed that no one was offering because I wasn’t allowed, that maybe it wouldn’t be good for my baby for me to do so.

On the day I found my voice and asked when I might be able to change her diaper our nurse raised her eyebrows at me. “You can do it now,” she answered and my eyes pooled with tears.

“Oh honey. I am so sorry. I didn’t realize that you wanted to. I didn’t realize that no one had told you.”

You miss so much as the parent of a preemie, when they whisk your baby from you before your first glimpse and put down a feeding tube before you can put her to breast and cradle her in cotton before you can cradle her in your arms.

I was so looking forward to her first bath. I was going to do that. I was going to give her her first bath. Me, her mother. It would be my first act of motherhood that was my own in this foreign way of mothering.

I waited in anxious anticipation for the day that they announced she was big enough, stable enough, strong enough for her first bath.

Finally, I couldn’t wait any more and I asked.

She had been getting baths for weeks.

I spent ten to twelve hours a day at the hospital but they bathed her at night, late, long after I was forced home.

And I missed it.

I missed it and it broke me.

I vented my anger at the staff because how could they take that from me? Didn’t they know? Didn’t they know I wanted every opportunity to mother? Didn’t they know I wanted the firsts?

But they didn’t and the reason they didn’t know is because I did not tell them.

And I had not asked.

After that I learned quickly. A note on her chart “Do not attempt X without speaking to Mom! Mom wants to be present!” for the things that weren’t pressing, like giving her the first bottle or dressing her in her first outfit.

This is what I mentioned to the nurses, that sometimes? Sometimes we’re scared to death that touching our baby is the wrong thing to do because everything else in this prematurity scenario is so counter-intuitive. Sometimes what we desperately want is within our reach but we don’t know it because every bit of this is journey is new and not a hint of it was covered in the baby books we read. So sometimes? Sometimes we just need to be asked.

But the most important thing to remember is that that baby? That baby is yours. Despite everything else that was stripped from you, your pregnancy and your birth experience and your expectations, you still have this.

This is what I tell every person who reads Scarlette’s story and emails me overwhelmed to say they just had a preemie or that they are on hospital bedrest and hoping. I offer my love and my prayers and then I tell them: Do not be afraid to ask how you can be involved in your child’s care. They will let you do as much as you and they are comfortable with, you just need to let them know you want to. 

And it will make the unfamiliar seem a little less daunting.

The first night I was able to give Scarlette a bath, at 9 actual weeks/34 gestational weeks old:

Scarlette After Bath 2 | 9 Weeks/34 Gestational Weeks from Kayla Aimee on Vimeo.

Kayla Aimee About Kayla Aimee

Kayla Aimee (GA) is the mom of a micro-preemie, Scarlette, who was born at 25 weeks gestation at just 1lb 8.6 ozs and spent 156 days in the NICU, facing a myriad of issues from PDAs to milk protein intolerance to sensory processing disorder. Scarlette is now a feisty four year old who spends her post-NICU days charming everyone she meets.

Kayla Aimee is the author of Anchored: Finding Hope in the Unexpected, a memoir detailing their journey with prematurity, born from her love of writing and her passion for providing support for parents of preemies.

A southern girl through and through, Kayla Aimee writes about faith, family and her favorite things at www.kaylaaimee.com and loves chatting with other parents on her Facebook page

Comments

  1. What wonderful advice you have given! I wish I would of been more vocal when my preemie was born. Of course that was 20 years ago and things were a little different but not a lot.

  2. Your writing is a gift. I love being able to read the same thoughts and feelings that I had put down so coherently and beautifully into words. Thank you.

  3. So well said! I wish I would’ve read this January 20, 2013 the day before I had my preemie via c-section and was scared to death and completely clueless. It takes us way too long to find our voices and by then we’ve already missed so much. Wonderful advice for those about to begin the journey us veterans have navigated…

  4. my daughter was born at 35 weeks (she is 9 weeks now) and even though she was a late pre term preemie, this article hit right on. I was afraid to ask so questions, looking back I wish I had. we were only there for 13 days, but it was long enough to miss the first bath (of course they did it the one night I went home to be with my 2 year old.) I did change most of her diapes, mmore because, I just did it, and most of her feedings. but I can only imagine how it would feel to not be able to touch her – the 36 hr I couldn’t hold her were too long! thank you for sharing your story!

  5. Thank you. I was reading this at work on my lunch, and trying not cry. I felt like you too! My daughter is now 16 mo old, 13 adjusted. She was born at 28 weeks, 1 lb, 13.6 oz. My first baby, and I was devastated for everything that was happening to her. I blamed myself for her being born prematurely. I didn’t get to be there for Cora’s firsts either. Her nurse would send me pictures of them giving her her first bath, bottle, her first piece of clothing, her first hair bow…I only got to experience it by cell phone pictures. I didn’t think to ask either. I didn’t find any of these preemie communities until long after she came home. I wish I knew this all before, but it’s fantastic for new preemie parents!!!

Trackbacks

  1. […] I’m so honored to be sharing our story with Hand To Hold, an organization dedicated to providing support to parents of preemies. Please click here to read the rest of this post on Hand To Hold’s blog. […]

  2. […] +Michael’s stay in the NICU was completely disorienting.  I loved Kayla’s post on advice for parent’s with a baby in the NICU. […]

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