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Is Your NICU Baby a “Touch-Me-Not”? What You Should Know

November 20, 2020

I'm katie, OTD, OTR/L, NTMTC, CNT & founder of blooming littles

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Have you heard the term “touch-me-not”? It’s NICU slang for a baby who has a real hard time tolerating touch and/or interaction. I’d say a lot of NICU babies go through a stage like this at some point, so you’re not alone if you’ve experienced this. Let’s talk more about what a “touch-me-not” is, how sensory processing skills are related, what we should AVOID doing with these babes, plus where we should start as NICU caregivers. Let’s reach the goal of helping NICU babes build positive sensory responses as they are healing and learning to interact with the world around them.

First things first, I want to challenge all of us to move past the phrase “He/she doesn’t like to be touched.”

AH, I know…I think it can be ingrained in our NICU vocabulary when you’re caring for a REALLY fragile NICU babe who gets medically unstable during a diaper change.

BUT…here’s the thing.

Let’s shift our mindset to a more strengths-based response, rooted in knowledge of development and trauma-informed care. 

Instead of thinking of your NICU baby as a babe who doesn’t like to be touched, let’s re-frame our thinking.

Let’s think, “My baby is learning about touch and needs me to help support him.”

I want us all to start recognizing that NICU babes are LEARNING sensory processing and sensory regulation skills. Their brains are shaping and developing neural pathways before our very eyes, and in direct response to our interactions and care.

So…let’s talk about it.

WHAT IS A “TOUCH-ME-NOT”?

Basically, this is NICU slang for a baby who “doesn’t like” to be touched or interacted with. 

Your baby may be a “touch-me-not” if you hear or say things like, 

“No, don’t do anything with him.”

“He doesn’t like to be messed with.”

“He doesn’t like to be touched.”

When I hear “doesn’t like”, that usually means a little babe is showing signs of medical instability, or major stress cues during their care and interactions.

Signs like drops in their oxygen (desats), increase in heart rate, decrease in heart rate (bradys), flailing movements, or an increased breathing rate.

If your baby can’t be held, you can still support development! I’ve got 4 ideas for you here.

SOME “TOUCH-ME-NOT” EXAMPLES

If you’re unsure whether your NICU baby is struggling with sensory regulation and sensory processing skills while they’re in the NICU, here are just some examples:

  • A 30 week baby who has bradys and desats during their nursing assessment.
  • A 32 week baby who has just had surgery for NEC and is recovering, but needs a low stimulation environment for stability.
  • A former 24 week preemie, now 38 weeks and intubated—who shows distress during a diaper change. 
  • A micro preemie who needs ventilator breaths and increased breathing support during any hands on care.
  • A term baby with gastroschisis who hasn’t been started on feeds and is difficult to calm down.

There are 100 examples I could share, this is just a taste. 

Here’s the thing, y’all…

Many of these behaviors and medical responses (changes in heart rate or oxygen rates) are EXACTLY what I would expect to see based on that baby’s medical status or age.

Yep! If I had belly surgery, I would be a “touch-me-not” too. (Nope, no touchy!)

The difference is…I have well-developed self-regulation and sensory processing skills to help me cope.

Babies don’t. They need us to help. 

WHAT DOES SENSORY PROCESSING HAVE TO DO WITH “TOUCH-ME-NOT” BABIES?

Sensory processing is the body and brain’s ability to integrate all of the sensory information in the internal and external environment successfully.

Y’all, there is a LOT going on! And there are even more senses than those in the image above.

1. Your baby will prioritize basic life functions before sensory processing.

All of your baby’s body systems have to work together in just the right way for them to balance all of the things that their body is doing. 

While your baby is learning sensory processing skills, they are also working on basic life functions like… 

  • keeping their heart rate where it should be,
  • breathing,
  • managing their temperature,
  • plus loads of other responsibilities.

Because of this, we can see babies who show some of those “touch-me-not” signs!

They’re saying, “Guys, I’ve got other things I’m focused on right now!”

We have to help (and let!) NICU babies focus on the basics…even if that means being patient and changing the ways we interact with them.

2. Successful sensory processing abilities are being disrupted by the dominance of procedure-based touch in the NICU.

Did you know that most touch experiences are procedure-based in the NICU?

That means most of a baby’s touch occurs during procedures like heel sticks, diaper changes, lab draws, temperature readings, blood pressure readings, etc.

What does all of that touch have in common??

It can be processed as a negative or less supportive touch experience, if appropriate supports aren’t provided.

That repetitive exposure can hinder a baby’s development of sensory processing and sensory regulation skills.

There’s a popular phrase when talking about neuroplasticity (building brain connections) of the brain….

,“What fires together, wires together.”

Meaning, the more neurons that are firing along specific brain pathways, the stronger that response.

The more a baby’s body responds to stress, the more dominant that reactive and protective response will be.

My goal for us all is to disrupt the cycle by learning how to support positive interactions with babies learning about touch.

WHEN INTERACTING WITH A “TOUCH-ME-NOT”, ARE THERE THINGS I SHOULD MAKE SURE I DON’T DO?

Absolutely! 

Let’s be sure we don’t…

  • Avoid interaction all together.
  • Use a “get in, get out” approach to caretaking.
  • Discourage positive touch experiences like Kangaroo care or hand hugs.
  • Ignore baby’s cues.
  • Limit sensory input entirely.

Some of these may feel like your ‘go-to’ move when you want to protect fragile babies. 

Again, I’m challenging us here.

Depriving a babe of all interaction, especially positive touch, has the potential to hinder your baby’s ability to learn self-regulation  or sensory processing skills.

Remember, even in the womb, that babe was exposed to sensory input.

They weren’t deprived of sound, touch, movement, pressure, or even taste!

It’s time to think, how can I provide appropriate input (or slowly introduce it) based on my baby’s age and medical status, so that we can support sensory processing skills instead of avoiding sensory experiences all together?? 

If you’re caring for a NICU baby who has difficulty tolerating positive touch experiences, like Kangaroo Care (skin-to-skin), don’t worry…there are some thing you can do! I point out 7 different things to consider in this post!

7 THINGS TO EXPLORE WHEN YOUR BABY ISN’T TOLERATING SKIN-TO-SKIN HOLDING

If you have a neonatal therapist in your unit, I would highly encourage you to use them as a resource as you develop critical thinking skills surrounding this discussion.

WHAT DOES MY BABY’S MEDICAL STATUS HAVE TO DO WITH SENSORY PROCESSING?

E V E R Y T H I N G!

Your baby will prioritize basic life functions FIRST (we talked about that above!).

The more medically fragile your baby is, typically the more they struggle with sensory processing.

(Source: Als Synactive Theory)

Makes sense…their body is taking in a LOT of input. 

For example, if they

  • have a breathing tube,
  • are post op surgery,
  • battling reflux,
  • getting a sepsis workup,
  • having seizures,
  • or any number of other medical concerns

…that is a lot to process— the regulation of pain, stress, body responses, etc. take priority.

If caregivers are talking at the bedside, or the doors to the incubator are clicked shut suddenly, or the smell of hand sanitizer floods their incubator…that additional input (though it may seem small!) could create a “touch-me-not” reaction. 

Breathing + laying still = baby can do it!

Breathing + laying still + pain from belly incision + diaper change + conversation at the bedside = too much!

WHAT DOES MY BABY’S AGE HAVE TO DO WITH SENSORY PROCESSING?

Your little’s age has EVERYTHING to do with their sensory processing abilities. It gives us an understanding of what is appropriate or expected for their age.

For example, I would expect a micropreemie (23 to 26 week babies) to be sensitive to touch and interactions. 

That is ABSOLUTELY appropriate for their age. They’ve got 3 more months of development to go before their due date.

Just because it’s an appropriate response doesn’t mean we let them struggle. 

For example: we expect a 2 year old to have tantrums, but we don’t rush them through it, we SUPPORT them through it!

Compared to a baby born at 26 weeks, a baby born at 35 weeks may not have as many difficulties regulating the lights, touch, smells, sounds, and experiences that surround them in the NICU.

Source

The earlier a NICU baby is born, the harder it is!

The problem is…they need care that requires touch and interaction now. 

That’s one reason why it’s important to understand how to care for “touch-me-not” babes.

You are their protector! 

You are supporting the earliest development of coping skills.

Remember, instead of labeling your babe as a “touch-me-not”, let’s recognize your babe is actually just learning all about touch.

CAN A TERM BABY BE A “TOUCH ME NOT”?

Yes!

Preemies aren’t the only NICU babies who struggle with sensory processing and touch tolerance.

Term babies can also show negative responses to touch input and interaction if their medical demand is high, or if they were born with a congenital or genetic condition that affects how their body or brain can interact with the world.

Every baby has their own specific sensory-based needs (just like us!).

WHERE DO WE START?!

1. Prioritize positive NICU experiences and associations no matter the age or medical status!

It’s important to make sure that all touch experiences are as positive as possible.

Even if there’s a negative procedure, pain, or stress be sure you’re prioritizing comforting touch and pain and stress prevention interventions.

And…always respond to your baby’s signs of communication. If you see signs of overstimulation, pain, or stress…pause.

2. Be consistent.

NICU babes need more than one good hand hug a day.

It’s everyone’s responsibility to provide supportive care.

Every single person (parents, grandparents, nurses, respiratory therapists, neonatologists, ultrasound techs, environmental staff, neonatal therapists etc.) who come in contact with a NICU baby should be aware of their cues, and learn how to modify their task to support that baby!

3. Build trust.

By providing consistent, positive, and comforting interactions…you are building a trusting relationship with your sweet babe.

Trust, y’all!

It can sound silly, but the concept of a trusting baby versus a non-trusting baby is well researched. 

Caring for a baby who has poor tolerance to interaction and sensory input can be really difficult. Especially when they’re requiring medical management that requires hands-on care.

Let’s reframe the thought process from ,“that baby doesn’t like anything…” to , “My baby is learning about touch…”

That is STEP ONE to supporting babies while they’re learning about touch in the NICU.

How does it feel working and supporting a NICU baby with difficulty tolerating touch and interaction?

Does it help to know you are on the frontlines in teaching that little babe about touch?

You matter! You’ve got it!

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