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

Tackling Feeding When Your Preemie Has SPD

Feeding my micro-preemie was never easy. First there was that whole thing about how she was born at 25 weeks and weighed less than my typical dinner plate.

Then that whole thing about about how she needed to be fed through a tube.

And how after that she had tongue thrust issues that required a special nipple and squeezing her cheeks together as she drank from a bottle.
SPD Eating

Oh, and how it turned out she had a milk protein intolerance.

So it really shouldn’t have been a surprise when she couldn’t, well, eat.

But, like most things about prematurity, it caught me completely off guard.

I was a first time mom and so once we were home from the NICU I didn’t know which category to divide things into, like Totally Normal For Babies To Gag A Bit On Their Food or Symptom Of Something Stemming From Being Born Super Early.

Turns out, it was the latter.

She gagged on everything, no matter how perfectly smooth I pureed it.

It is a terrifying feeling to watch your child choke and it kept happening, despite reassurances from friends that she would eventually get the hang of it.

She never got the hang of it.

Tackling Feeding When Your Preemie Has SPD

We called in a speech therapist, who came and showed us through feeding therapy how to strengthen Scarlette’s cheeks with special exercises, how to rub a vibrating tube across her gums to help sensitize her mouth. We learned how to position a baby spoon just so and the amount of pressure to apply when pushing it against tiny gums. “O-PEN! O-PEN!” we would say as she pressed the spoon against her mouth.

A feeding therapist fed her her first bites. Prematurity claims most of the parental firsts, mingling my joy at watching her meet a milestone with sadness over all the dreams I had lost. The joy always wins out though.

Months later it wasn’t much better. I noticed it with the puff cereal, the tiny little grains shaped into O’s and meant to dissolve in a baby’s mouth. She kept gagging violently on them, which seemed odd to me on account of how they are basically made of air.

So I called the doctor again. “She’s fifteen months old and she still can’t eat puffs or anything other than purees.” I said. They sent out a specialist to evaluate us and soon we were seeing a speech therapist again and added an occupational therapist visit twice a week.
scarlette_eating

There were several issues at hand. One was that the all of the tubes that were in her mouth during her extended NICU stay had worn deep grooves in the roof of her mouth and her throat. The therapist said that she sucked her food back, like she was drinking, and then it got caught in the  grooves and choked her. The low muscle tone in her face meant that she couldn’t slow down the gagging.

The second was her oral aversion. I suppose if I had spent most of my first year with people pushing tubes down my throat, I wouldn’t want to let people put stuff in my mouth either, even if that stuff WAS painstakingly pureed peaches made lovingly by my very worried mother.

And then there was the sensory processing disorder, how she didn’t like certain textures and refused to touch any food, much less put it in her mouth. She wouldn’t let us feed her and she refused to feed herself. That meant her weight was slipping, along with my confidence.

Early Intervention was a lifesaver for us.

Through occupational therapy we learned how to get her touch things that weren’t hard and plastic. We put her hands in moon dough and jello and bins full of beans. We rewarded a hard bite with a treat. We learned the best ways to introduce new foods and textures, when to push and when to pull back. It was slow and tedious and it felt like she would never willingly eat.

At 18 months old she ate her first biter biscuit.

Now she pets the dog and eats peanut butter and jelly sandwiches. She washes her hands every time jelly slightly squeezes out on to them but she eats it. And then she brushes her own teeth while she sings Let It Go and I watch and think about how far she has come.

scarlette teeth brushing

She still sensory seeks, running barefoot always and pressing her hands against the hum of the dishwasher, but she eats and that is a huge victory. It has been a slow crawl toward the finish line rather than a sprint forward, hands up and breaking the tape.

She is four years old and she still gags sometimes, sending me shooting up out of my seat, knocking over my drink to keep her from choking. But it went from minutes to days to weeks between. I count the stretches of time between this time and the last time; it is ever widening and that keeps us pushing forward knowing that it is such amazing progress from where we started. Even if I do still have to cut her food into baby-sized portions.

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. samantha joanne says:

    hi, i loved reading your story although a little scared about my little one. he was born 25 week 820g in poland visiting my partners family, it was a distressing time being alone due to my partner working in the uk and not speaking the language! But we’re out of hospital now 3 months still attending hospital appointments and rehabilitation. However, I’m glad to hear that there is light at the end of the tunnel and that things can become more manageable. So thank you for sharing!

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  1. […] chapter of it (that’s all you can get right now) and I like it very much so far. She also writes great blogposts about dealing with feeding issues and sensory processing disorder (her child was stuck at purees […]

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