Hello Friends đ
In this episode of Beyond the Beeps, Leah discusses the importance of understanding a baby's senses in the NICU with occupational therapists Emily Hills and Lindsay Hardy. They explore the concept of co-occupation and co-regulation, emphasizing the vital role parents play in their baby's development. The conversation delves into the eight senses, the impact of early birth on sensory development, and practical tips for parents to enhance their baby's NICU experience. The episode highlights the significance of parental presence and the right way to interact with babies in a sensitive environment. In this conversation, Lindsay and Emily discuss the vital role of parents in the NICU, emphasizing the importance of breathing, connection, and communication. They explore the concept of touch times, the significance of sensory needs in the NICU environment, and how parents can manage their baby's pain during procedures. The discussion highlights the need for a supportive environment for both parents and healthcare providers, focusing on the shared sensory experiences that can enhance care. Ultimately, they convey a message of hope for families navigating the challenges of the NICU journey.
LINKS:
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ChaptersÂ
00:00 - Introduction to the NICU and Your Baby's Senses
03.42 - Learning about your baby: Your babyâs job and your job together
07:27 - What are the senses?
12:32- How parents can improve the sensory environment of their NICU babies: Skin-to-skin care
15:17- Impact of Early Birth on Sensory Development
17:49 - How babiesâ senses develop from birth
23:22- What parents can do to help their babies in the NICU
25:23- Daddy is very important
27:32- Using your hands to support your baby
29:53 - Tips to help parents stay calm when doing care
34:18 - Making the case for paying parents to be at their babiesâ bedsides
36:45 - Tips for caring for the medical team
42:04- How parents can improve babiesâ pain
47:42-The Vital Role of Parents in their babiesâ lives now and in the future
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Short Bios:
Emily Hills: Emily Hills is a Clinical Specialist Neonatal Occupational Therapist at Royal Free London NHS foundation Trust. Emily is a certified neonatal therapist (CNT). She has completed her MSc in Advanced Neonatal Studies at Southampton University. Emily is NIDCAP certified and lectures on The Family and Infant Neurodevelopmental Education (FINE) programme in the UK. Emily is a qualified lactation consultant. She has completed Neonatal Touch and massage certification (NTMC) and has completed the advanced course in The Prechtl General Movement Assessment. She is a senior Brazelton trainer. Emily is co-author and co-founder of Sensory Beginnings Ltd and is an Advanced Practitioner in Sensory Integration (SI)
Lindsay Hardy: Lindsay Hardy has worked as a paediatric occupational therapist for many years for the NHS and charities in the United Kingdom and abroad. She has led teams of occupational therapists, physiotherapists and speech and language therapists and designed content and taught post-graduate courses for therapists and others in the field of paediatric occupational therapy, sensory integration, cerebral palsy, early intervention, developmental neurology. She is an expert practitioner in Sensory Integration, has completed several advanced trainings including Bobath Course in Early Intervention, in Prechtl General Movement Assessment, and advanced training in Conductive Education and has completed Circle of Security Parenting training and level 1 VIG training.Â
Lindsay is co-author and co-founder of Sensory Beginnings Ltd and is an Advanced Practitioner in Sensory Integration (SI)
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The transcript of today's episode can be found below đ
Leah (00:02)
Hey everyone, welcome back to Beyond the Beeps for this month's chat. As you may have noticed from last episode, we're now also viewable on YouTube. You can find full videos of Beyond the Beeps at icubaby.org. Today is a very special Beyond the Beats episode, bringing in two brilliant women from across the pond in true incubator international style who can help us understand our baby's senses.
and how we as parents can improve our baby's NICU experience. We always say that I see a baby and then the incubator and we can never say it enough. A parent's presence with their baby in the NICU really makes a difference for you the parent, the healthcare team and your baby. We have talked with different parents and professionals about how to do some things at the bedside like communicate with the healthcare team, manage some of our emotions. But today we're gonna talk more about what we can do
with and for our babies. There is no doubt that a parent knows their baby best. But I don't know about you. When we're in those first NICU moments that are probably scary and certainly brand new, it's hard to know what to do. What can my baby feel? What can they see, taste, smell, touch? What are they going to remember? You're not alone in your wonder. In fact, did you know that the American Academy of Pediatrics didn't even know that babies experienced pain until the 70s?
and they didn't outlaw surgery without anesthesia until 1987. Extraordinary. We have learned and continue to learn so much about baby's sense systems and how the wellbeing of those sense systems can really improve their NICU experience and their long-term health and wellbeing. Thankfully, we have with us today those two women who are helping to advance the knowledge and improve the healthcare for NICU babies.
Joining me today are Emily Hills and Lindsay Hardy. They are both advanced occupational therapists and are the co-founders and co-authors of Sensory Beginnings, a UK-based international sensory integration, education, and resource company. I had the privilege of meeting these two women at Mary Coughlin's Trauma-Informed Professionals Science and Soul Conference last year in Boston, where they presented the most compelling, helpful, and joyful presentation about their program.
A little bit about these brilliant minds and caregivers. Emily and Lindsay both hold advanced degrees in occupational therapy, neonatal therapy, and sensory integration. They are experts in the field of sensory integration, which is what we're gonna talk about today. Emily is also a qualified lactation consultant and has certifications in neonatal touch and massage. And Lindsay, quick backstory, is actually Emily's former teacher, is...
leads teams of therapists and designs and teaches postgraduate studies on sensory integration, cerebral palsy, developmental neurology, and more for therapists and medical providers. Welcome to you both. I am thrilled to have you here.
Lindsay And Emily (03:11)
Thank you very much for having us. We're delighted to be here. Thank you.
Leah (03:12)
Yes,
it is such a privilege to have you and thank you for meeting us in the late night hour from a different time zone. So we really thank you for that. So when we talk about occupational therapy, so occupation, we use that word means a job. And what is the job of a newborn baby?
Lindsay And Emily (03:23)
Thank
Well, if you look at occupations are everything in life. so the occupations of a baby are to sleep, to play, to eat, to be with someone. And it's all about co-occupations. As Lindsay's always telling me, there is no baby without the family. And so their occupations are always co-occupations.
Leah (03:45)
Mm-hmm. Yeah.
Hmm.
I love that. Say more about what co-occupation is.
Lindsay And Emily (04:11)
doing things together. So humans are about relationships. We're not meant to be in isolation. We're meant to be part of tribes and with our people. And so we were driven to connect and to be with others. And so as babies, it's about reading each, well, not even just babies, it's about across the lifespan, it's about reading each other's cues and adapting and helping each other self-regulate in order to do what we want to achieve in life.
Leah (04:34)
Right.
Lindsay And Emily (04:41)
An example would be, I was driving in the dark, was slightly stressed when I got here, Lindsay co-regulated me and now we're doing this lovely co-occupation together.
Leah (04:53)
That's a great example. Yeah.
Lindsay And Emily (04:55)
Yes, so all our parenting activities really are co, what we would call co-occupations because you're doing them with someone else, with the baby. So all the babies learning from the parent right from the get-go, so many things, you know, when they're feeding or when they're being cuddled or having that continuity of care and expectation of cares being available to them are
Leah (05:02)
Mm-hmm.
Lindsay And Emily (05:24)
the starting point really of our ability to regulate and have an idea of what's coming next. Our ability to have an expectation of regularity is really important to us for our bodily rhythms, for things like sleeping and eating, just really fundamental things. So parenting, especially early parenting, is all about
co-occupation about looking at your baby, working out what they need, going in there and helping them to regulate as Emily said. So these two things sort of coexist, if you like as well, co-existing of co-occupation and co-regulation come together and that's what parenting is all about.
Leah (06:05)
That's so crucial, I think, for us to understand also that with you both being occupational therapists, I think, Emily, you work in the NICU and, Lindsay, you work in NICU follow-up, right? And that sort of world is you are the professionals that we would want our families to connect with to learn the parenting of the baby, like to learn this co-regulation, yeah?
Lindsay And Emily (06:31)
Yeah, and I guess it's just, it's, it's all about coaching and being with and I think we've learned a lot, particularly as neonatal therapists over the years that we were, we went in and we had an awful lot of exciting information we thought we had to share with everybody and we wanted to educate and teach and actually who are we to do that? And so it's, it's about being with and modeling and coaching and learning together because the parents are always the experts in their baby. And so it's a, it's a real
It's a really good job. It's a real honor to learn together.
Leah (07:03)
Yeah, do either of you have babies, children or children in the NICU?
Lindsay And Emily (07:08)
In the NICU? No. No, no.
Leah (07:11)
Yes. No. OK.
But you've parented. You've been part of the parenting unit of thousands of babies in the NICU. Right? You're part of the team. You're on their team. Right? OK. Amazing. Amazing. OK. So going to the specialty that you guys really have, which is sensory integration, we're talking about our senses. And for those of us who are thinking like I am, that's like touch, taste, smell. And I was only raised that there were five senses.
Lindsay And Emily (07:20)
Yeah, yeah, yeah, yeah
Leah (07:41)
Right. And I have copious notes from the presentation that I referred to earlier that are sitting in front of me here in my books from you all that told us that we actually have eight senses. I think you need to catch us up.
Lindsay And Emily (07:53)
Well we have eight at the moment, we may yet have more. yeah we better catch up on the eight at least. So yes absolutely as you say Leah, everybody across the planet knows that we have five and still that's what's taught in schools in the UK and I assume in the US and North America generally.
Leah (07:58)
boy.
Yes.
Mm-hmm.
Lindsay And Emily (08:17)
But yeah, so we have our touch, our taste, our smell, our hearing and our vision as the ones that we know all about. But we actually have three more very clearly outlined and we've known about them actually for a long time. It's just we still don't talk about them generally. But one of them is called proprioception. so proprioception is information you get from your muscles and your joints.
Leah (08:38)
Mm-hmm.
Lindsay And Emily (08:44)
And so it's constantly feeding your brain, your neurobiology with information about where your body is. And it can help for us to also plan where does it want to be next. So it constantly feeds information to our brain about where our body parts are and supports us in our postural changes and our postural movements. So then we have something called the vestibular system.
The vestibular system is the receptors for that are located in our inner ear right next to the receptors for hearing but they're a separate little bundle of receptor cells and they pick up the sense of gravity and we don't tend to think about gravity because it's been here all the time we've been here so we don't really give it much thought.
Leah (09:21)
Mm-hmm.
Right.
Lindsay And Emily (09:38)
The time when you really notice it is when you're on the swings or on the roundabout or you're trying to do a handstand, something like that, then you might notice it a bit more because you're really pushing your body into different positions in the gravity field. So then it focuses your attention on it a bit. But it tells us about gravity and then it tells us about our position in the gravity field. So it's how at the moment that you know that you're sitting upright.
and you haven't got your head falling over to the side and you're not hanging upside down, for example. So it tells us about position in relation to gravity. And then thirdly, we have something called interreception. And interreception is sensation from our inner body parts. So that's from your gut and your bladder and your heart and your lungs and all of those inner organs.
And that information, if you think about it, it tells us, it tells our brain about whether we're hungry or our blood is full or our breathing needs to be faster because we've just run up a hill or whatever it might be. But also those very sensations are also really impacted by our emotional state as well. So we might have, might feel something in our tummy, in our stomach.
Leah (10:55)
Hmm.
Lindsay And Emily (11:02)
And that feeling might be that I'm hungry or that I'm feeling unwell or that I'm excited or that I'm really scared. And all of those sensations come from the feed that we get from our internal organs and then the sense that our brain makes of it. Do I feel it as a physical sense or an emotional sense, for example? So those are our sensory systems and they all start developing really early when the baby's
only weeks old in terms of gestational age. So they're developing right from the get-go, if you like. And our genetic code for us as humans is that we're going to create a human and the brain for a human to be able to do some of the jobs that we do. But what our genes expect and need in order to play out appropriately.
is sensory information. So it's like food for the genes, food for our brain, food for our body to actually build the connections that are going to be helpful to us. So we constantly get fed sensory information from really early on in the womb that helps to build us and will continue throughout our lives. So for all of your lives, your brain will change its formation, change its connections dependent on
Leah (12:02)
Hmm.
Lindsay And Emily (12:28)
the sensory experiences that you have in life.
Leah (12:32)
So I would imagine then if we're that that expectation that you're talking about, so is a 40 week pregnancy, which would be a fluid life in with, you know, liquid inside the like the amniotic fluid. Now we're born early. Let's take, for example, or, you know, something's disrupted that we have low fluid, something's happening. That sounds like it would have a big impact on that period of time for what's
what I'm getting now. I don't live in fluid. I now I'm flat on a bed. What are some things that you can tell us about that? What do we look at there?
Lindsay And Emily (13:12)
So they're definitely all going to be changed and Emily will go into real detail about how that is going to look different, but just inevitably it's going to be different because we're going to be in gravity and we're not going to be in fluid as you say and sounds are going to be different and light's going to be different. So everything is going to be a little bit different than was expected. And that's why the experiences that we're trying to create on the neonatal ward.
Leah (13:23)
Hmm.
Mm-hmm.
Mm-hmm.
Lindsay And Emily (13:41)
are as close to the womb experience as possible, because that's going to be the most helpful is thinking for your baby's development. And if you think they were going to be inside a womb inside a parent, then the importance of having the parent be there is is pretty vital, really. Yeah, I would say. But I think
Leah (13:57)
Mm-hmm.
Yeah.
Lindsay And Emily (14:10)
Yeah, I think actually, to be honest, it was pretty naive of us to think, do you know what, we'll flip every single one of those eight senses and it will all be fine. And it's it's we flip all of them. And what's interesting is when you look at the the the long the longitudinal cohort studies. So in the UK, we have the Epicure study, which you're probably familiar with, which we looked at babies born less than 26 weeks and we followed them until they were 19. And we're doing Epicure two now. And it shows us that actually
Leah (14:19)
Right.
Lindsay And Emily (14:39)
our medical interventions are getting better, like things like, you know, obviously, surfactant, magnesium sulfate, delay, cold clamping, all the fun, shiny medical things we get better at. And that means that things like cerebral palsy will happen, but it's not on the rise. And we're keeping little people alive, younger and younger, but we're getting better. But what is on the rise is sensory processing difficulties, autism, ADHD,
Leah (14:49)
Mm-hmm.
Yes, we are.
Lindsay And Emily (15:09)
specific psychiatric difficulties later. And this isn't to say everybody's going to get this at all, but there's a, you see it. And I think the biggest thing that is missing from neonatal care, which Lindsay will explain, are the parents. The best sensory environment for you to grow a healthy brain is in the loving arms of your parents. Skin to skin is the most researched area in the whole of neonatology.
Leah (15:17)
Mm-hmm.
Lindsay And Emily (15:38)
but it's not quite shiny enough. So it gets kicked out every so often. And actually, like I took Lindsay to the, we went to the Gravens conference a few years ago. I can't remember if I've ever told you this, but it was an amazing conference, but we sat through maybe about four randomized controlled trials about families are really important. Parents are really important. We must have the families there. And Lindsay is like, what is wrong with you guys? She's like, if it's so important.
Leah (15:42)
Hmm.
Lindsay And Emily (16:07)
Pay the parents, end of. That's it, job done. They'll be cheaper in the long run. They're the best sensory environment. It's what the evidence says. Stop doing all your shiny stuff. Well, hopefully we'll do both. Yes.
Leah (16:10)
Yeah.
Yeah, well, I mean,
that's really, it's true. I was just talking about this because we do a transportation program. I was talking about this mom getting an opportunity, particularly with a mother, to make memories with her baby, to be there. In this case, it was before the baby passed away. And if we hadn't been able to support that, she wouldn't have had those memories and that would have been horrible. But what I'm hearing you talk about is that we take a baby, a baby comes out of this perfect world, if you will.
Lindsay And Emily (16:39)
Right.
Mm-hmm.
Leah (16:52)
for their sense systems and they come out for some reason or another, right? Just happens sometimes. And the thing that can impact their environment or their wellbeing while we work on lights and sounds and things is really the next place that we want them to be is with their parents.
Lindsay And Emily (17:13)
Yeah. Yeah. It's the best sensory environment. We are always joking that we are not little horses. We don't go give birth and go galloping off into the distance. You give birth and you're meant to be held in the loving arms of your parents. And life throws so many social stresses and financial things on families and distances in the States as well. The ability to be there is so hard unless we're going to support you. I think
Leah (17:18)
Yeah.
Hmm.
Yeah.
Lindsay And Emily (17:43)
If we think about why it's, maybe it's the why it's so important that the parents are there. So if we think as humans, as Emily said earlier, whenever you're born, you cannot survive on your own. And we can't survive on our own for a very long time. And actually, you could argue we never survive on our own really. We're supposed to be together. all of our, so we have on top of that,
Leah (17:48)
Yeah.
Lindsay And Emily (18:10)
We have a really, really long childhood as a species. know, our brain isn't fully matured really until it's mid-20s. That's a really elongated time. So we have two things there. One is that we have a really long childhood anyway. But secondly, we are born at such an early stage in terms of our development that we are totally dependent on someone else to feed us, to keep us warm, to look after us in every single way.
Leah (18:22)
Right.
Lindsay And Emily (18:40)
And so our genetics have been designed that we have to make contact, that we have to be in relationship with somebody else. It's as vital as food is the way we get food is as basic as that, that we must be in relationship. And so our sensory systems are designed to pull us towards somebody. So our tactile system is actually designed
not just to give touch, but to seek touch. Our auditory system isn't just designed to listen, it's actually designed to seek out sounds and to seek out human sounds. And what's more is to seek out our parents' because our parents are a place of safety. We learned that in the womb. Even if you're born early, you've already been hearing your mother's voice and your mother's rhythms. So for every one of our senses, vision, our vision isn't just
Leah (19:19)
Hmm.
Lindsay And Emily (19:38)
We just receive, we actually seek out and as a species we seek other human faces to look at. Now developmentally, early on, you don't want to be looking, Emily can pick up on that, but because we're not developmentally ready for it yet. But every one of our senses, movement sense, the vestibular sense, we're familiar with the movement of our mother. That's what safeness feels like.
Leah (19:41)
Hmm.
Hmm.
Lindsay And Emily (20:05)
So then we come out of the womb early and actually we get pretty much no movement. And then when we do get it can be a bit dramatic, but when we can be on our parents skin to skin, you at least are getting the movement of the mother's body as she breathes. You're getting some rhythmical movement that's coming through you. So all of our senses.
in order for us to survive are not just about food and water and oxygen actually in order for us certainly for us to thrive. We could argue to survive actually is our sensory systems are seeking familiarity, familiarity, safety, are looking for like little tentacles and looking for that information. And if we think about it a little bit more, if you think your brain is inside
Leah (20:53)
Yeah.
Lindsay And Emily (20:58)
black box effectively. It doesn't feel, doesn't see, it doesn't do anything in terms of sensory seek on its own. It can only know what's going on by the sensory systems receiving information and sending it to it, sending them down the wires to the brain for it to then make sense the world it's in. And early on
Leah (21:18)
Hmm.
Lindsay And Emily (21:23)
all of our lives, our sensory, our brain is building itself based on the sensory feed it's, it's receiving. And early on, it's really doing the building blocks. It's like foundational blocks that we're building. And so the most helpful thing we can do beyond obviously the nice shiny things that Emily was talking about that actually keeps us alive, which of course is vital, the number one thing. We're not questioning that. But
Leah (21:49)
Right. Right.
Lindsay And Emily (21:53)
The next thing is to provide the most helpful sensory feed information that is going to support what's going on inside this black box to build the, create the building blocks and build the foundations for your neurobiology going forwards. So that's really why the parents are so important because this is what we've been geared to look for.
This is what we've been geared to seek out and find that safety and help us to build our brain.
Leah (22:29)
just, that's like, I'm like, I want to get up and like, cheer. This is so beautiful and so important, because it's something that our parents are also wired to do. The baby's wired to seek, the parent is to, and you know, that is their job. And it's one more thing they can do. Okay, so what? What can
Lindsay And Emily (22:40)
Mm-hmm.
Absolutely.
Leah (22:53)
you know, what are our parents positioned to do? You you've been, set this up in this beautiful structure of like the eight different senses. What are some things that our parents can do? Let's, I mean, we can choose a sense system. I know that the NICU is very loud and bright, and you mentioned just now something about vision. It's pretty noxious to even parents sitting there, never mind the babies.
What can we do as parents to help our babies?
Lindsay And Emily (23:28)
So many, many things. And it's going to depend. A lot of the things are going to depend on the baby's gestational age as well. And so suppose you're, you're starting with baby 22 weaker. And as a parent, you're going to, it's terrifying. And maybe your little baby doesn't look how you envisage they were going to look, but you're the most important thing is you looking and learning about your baby's behavior right from the very first moment in life.
Leah (23:30)
Yes.
Lindsay And Emily (23:58)
and sharing that with everybody. So your baby likes to sleep with their fingers near their mouth. You tell everybody because then when you're not there, people can support them or your baby always wants to have their nappy down on their side. Tell everybody. So all those hours spent watching are so important and it doesn't really matter if your baby is born 22 weeks or 42 weeks. We all do the same. We look, we drink up that little person and who they are.
And so your vision is really important. And then it can be super, super frightening. And so it might be like, we're not going to take straight out of the skin to skin, but you might be just doing little hand hugs and hand hugs are life. So your hands are going to fake the amniotic fluid and you're going to be using those super still hands. And as you know, we need eight hugs a day for four to survive, eight to thrive. And so that's one little hug.
and then your voice. from as early as well, the literature is changing. used to be used to say like 24, 25 weeks, you can hear. now they're thinking that your subplates neurons for your auditory system are coming online as early as 12 weeks. So your voice really, really matters. And what we do know around that 28 weeks mark, you can start telling the difference between your parents voice as well. And so you're
Leah (25:21)
Wow.
Lindsay And Emily (25:23)
So daddy has a really important role, particularly because the frequencies are going to be, it's going to be lower. So it's going to be really nice for the baby. And so, and then also having something that smells. So we give out on our unit and I'm sure every in the States, it's very similar. You give out little bonding squares. And so we give out three, one for each of the parents and one for the baby. And then they're changed. So the parents can always smell their baby and the baby can always smell their parents. So there is.
always something to be done and I think obviously you're still following the guidelines of your the neonatal unit and some neonatal units might say we would love head in the midline for the first 72 hours and we would like minimal handling your voice your smell your hand hug amazing and you're watching that's that's going to be so important and you're going to work up to that beautiful skin to skin and
The worst thing that any of our teams have ever said to a family and it's not done, it's not done in a mean way, but it's just done a bit. It does not thought it through where somebody on the team goes, Oh, that baby doesn't like handling. you're like, that baby doesn't like bad handling. But for the baby, if we show, if we do it slowly and considered and we look at the whole environment. So we're looking at the lights and the sounds and all of that.
Leah (26:35)
Hmm.
Yeah.
Lindsay And Emily (26:49)
Yes, that baby's going to love their parents' loving touch. The worst thing you can ever say to a baby parent is, yeah, your baby don't touch them. It goes against all your instincts.
Leah (26:57)
Hmm. Yeah. And you're you're you're doing
something as you're talking because you're a professional and those of us who are listening on the in the podcast can't see you. But there's there's a set that's OK. There's a set of things that you're doing that I want you to help us understand, which is when we're going to touch our baby. Right. That's can be overwhelming. And we don't want to do any harm. And we were, you know, very
Lindsay And Emily (27:21)
Yeah. Yes.
Leah (27:27)
frightened of that and what's the order that we should be doing this?
Lindsay And Emily (27:32)
So this is probably works across the lifespan. So although we're looking at little tiny people, sudden sensory input isn't very nice for any of us. So you're always just gonna talk first. So give a warning that you're there. Then you're just gonna, and tell the baby how much you love them or what's happened today. And then as you do that really softly, you're gonna be warming up your hands so that your hands are gonna be nice and warm. And then you're gonna start.
Leah (27:35)
Yeah.
Yeah.
Right.
Lindsay And Emily (28:02)
with slow, still hands. So right now I'm just doing a little handhug, but slow still hands. And that's for most of us and this, know, not everybody, but for most of us, light tickly touch is really disorganizing. Having said that, every so often I've watched a parent stroke their baby's eyebrow and I'd been going, my God, that looks uncomfortable. The baby is loving it.
Leah (28:07)
That little cup of the head in the bum or something. Yeah.
Hmm.
Hmm.
Lindsay And Emily (28:30)
I think as healthcare professionals, would never risk it. We would always talk first, warm hands, hand hugs. But as a parent gets to know their baby, they know if they've got that little magic eyebrow or whatever it is. So we do have to individualize it and it's based on cues. a starting first talk, then touch, then do whatever else needs to be done later, but always based on the baby's behavior because some little people take time to settle into that hand hug.
Leah (28:51)
Hmm.
Lindsay And Emily (29:00)
other little people that like bring on the next step.
Leah (29:00)
Right.
Right, and waiting, like you're talking about, like if you put the hand hug and they kind of startle a little, it's just to wait, wait for them to settle.
Lindsay And Emily (29:09)
Yeah, and
breathe in, breathe into it because it's kind of like they'll wriggle and then if it's your first time you're gonna go like wriggle as well. And so it's like you kind of in a way you want to be one. So I'm always like, okay, you are the amniotic fluid, which makes me feel a little bit like a hippie at times. But it's just like, just trying to get you to breathe into it and stay in the moment a little bit. And also, I think it when parents
Leah (29:19)
Sure.
Hmm.
Lindsay And Emily (29:38)
appreciate just how vital they are, just how important they are. Hopefully that slightly dampens the stress a little bit because you are doing a really important job. You're not stepping outside a boundary or anything. You're doing what's needed here and the most helpful person to do that is going to be you as a parent, mum, dad, whoever. It's really important and that
Leah (29:41)
Hmm.
Mm-hmm.
Lindsay And Emily (30:06)
also to think that what we can, as Emily said, if we're tense as the parent, then that tension is also going to be felt. So easy said, not so easy to do when we're anxious, but taking that breath and just thinking, you know, I'm here for you, I'm doing this for you, doing it for me as well, of course, but for you, this is helping, this is helpful.
And if we can feel as calm as possible, as I know, easy to say, take the deep breaths, take a moment and just really centre yourself as much as you can, then that's going to be even more helpful.
Leah (30:54)
Yeah, mean, you brought up something there about the boundaries. There's a lot, obviously, that we're using to protect babies. And here in the States, we have a well-known terminology called touch times. And that's basically the time that is set aside to care for a baby. So the other time would be called cluster care, where you're
That's what happens in the touch times is you cluster all the care together and the rest of the time is meant for the baby to rest, right? And that usually happens every three hours that there's, where you mentioned like, you know, head and midline or certain things that have to be followed and only at that time will they change a diaper or take a temperature. And that same conference we were at is when I believe it was Mary Coughlin who said, you know, touch times aren't for parents. It's for the caregivers, like the healthcare providers.
Lindsay And Emily (31:46)
Thank
Leah (31:49)
But it helps our families, like so in that world of learning who's in power, like who has the power and who is able to do things when and how. I think a lot of it is communication about figuring out, learning your baby and then communicating, you know, and you know, the nurses and doctors really are protective of their babies also. And so they have to learn each other. You guys have to learn each other to know that this is going to be the right thing. And they really just don't want to do anything. Parents don't want to do anything wrong.
and they feel they're still following that set of rules. So I think that learning the cues like you talked about, Emily, and then certainly, Lindsay, what you're talking about, like figuring that out so you know how to interact and then helping the healthcare team understand your baby too, you're their voice. I don't know if there's anything else about that you have thoughts.
Lindsay And Emily (32:38)
Mm hmm.
Well, I wonder because you had to explain touch times to us because we were like, I wonder if they even just I mean, we like call them care times. And it just seems like because then that's the family coming in to care. And then it's it's already in, you know, we're not saying pairing, we not really sort of promoting parent participation? Because it
Leah (32:45)
Mm-hmm.
Mm.
Lindsay And Emily (33:03)
Otherwise, feels like that's the that's what I thought. Like it was the only time you're allowed to touch your baby is on these touch times. And so that's already giving a weird message. And so I wonder if that's like, OK, parenting, parenting times, parenting every three hours, because that's the sort of little parenting moments you're going to have. I get in order to manage fluids and to manage feeding, we putting you on a three hour regime makes life a lot easier. I get that. And for staffing levels as well. But I think
Leah (33:09)
Yeah, right.
Right.
Lindsay And Emily (33:32)
It's actually said that communication, the words we use really matter. It's the labels that we give things changes the emphasis, doesn't it? And changes the meaning that they have. But also, if I've understood correctly, what you were saying about the touch times is that they're saying that the parents can touch the babies at these certain times, but the rest of the time the baby should be left to try and sleep. Is that right? So sleep is really...
Leah (33:37)
Mm.
Yeah, and obviously it's a gradation,
right? When they're very early, there's less, you know, the same thing of going from talking only to talking in hugs, to talking, touching, holding, that same progression. But certainly when they're, it becomes a routine. And then our parents internalize that as, I'm going to be hands off now.
Lindsay And Emily (34:01)
Okay.
There's
a big drive right now to move away from clustered care, which is something we all did because the belief was do everything in one hit, let them sleep for six hours, do everything in one hit. And now the thought is that your little delicate neurobiology cannot cope with doing everything in one hit. And so there is a big drive to move away from cluster care, to spread out these sort of interventions that would have to happen throughout the day and to really focus on
Leah (34:23)
Mm.
Lindsay And Emily (34:45)
parenting at these nappy changes, temperatures, these moments coming out for skin to
Leah (34:51)
Yeah, it seems a funny thing
because our babies don't wear watches. So they don't know that, you know, like at three. Yeah.
Lindsay And Emily (34:56)
I'm always saying that when we're looking at feeding, there is no clock in that baby's
head. How are they? No, they got to wait another 20 minutes. Yeah, exactly. Yeah, that's going to take a few years. That's the other thing is that's going to take, you know, average child is going to take years literally to get to that point. I think the beauty is if you have parents.
Leah (35:03)
Yeah, it's they don't know that they shouldn't go to the bathroom for three hours because
Yeah, that makes sense.
Sure, yeah.
Lindsay And Emily (35:20)
and the parents can read their baby's cues and the parents can change the diaper whenever it's appropriate. Whereas when you haven't got parents, I don't know if it's the same in the States, but UK, it's hard to staff your neonatal unit. And so that's why everyone's put on these little military regimes because you can't staff it how a little human wants to be treated.
Leah (35:25)
Mm-hmm.
Of course.
Of course. Yeah. Yeah, it
has to work. It has to work for everyone, you know, and it makes good sense.
Lindsay And Emily (35:44)
While
we just change it, we make the parents there. Pay the parents. Because sleep is so important. mean, it's such a vital vital activity for sure. And along with, you know, feeding and everything, it's absolutely up there as a vital thing. But actually, the research shows as well is that sleeping will be better skin to skin. So if we if we did get to a point where
Leah (35:48)
Pay the parents.
Yes.
Lindsay And Emily (36:14)
as much as possible a parent is available, like, much as the time then away, this sleeping is actually part of what the parent can offer as well the best sleeping environment. So yes, you might be doing, you know, obviously, you the parents there for the parenting, co-occupations, but also they're really vital for sleep as well. If possible, when possible.
Leah (36:24)
Hmm.
Yeah, I was gonna ask you about that.
Say that again, I'm sorry, Emily.
Lindsay And Emily (36:42)
No, I was just wondering as well. Certainly in my experience is when people become a little bit protective of these care times and a little protective of don't handle, don't touch tends to be when they're a little bit broken themselves. so, yeah. so, and that's why none of this is going to work unless you're looking after all the time, the baby, the family and the staff, because when the staff are broken,
Leah (36:52)
Mm-hmm.
Yeah.
Lindsay And Emily (37:10)
That's when they say no, that's when they will say things like, it's my baby, I'm looking after them. They say things that they don't mean, but they're just like, they're at their bandwidth, you know?
Leah (37:20)
Yeah,
yeah, I was gonna, I actually was actually really gonna ask you about this because you work there, right? And day in and day out for our parents and for our healthcare providers, our parents even say, know, I can at least leave, you know, my baby can't. So they're aware of this, of the environment and the stress and, you know, the life and death environment that they're in. And then the healthcare providers are there.
all day for years, hopefully you get good ones this day. And for those parents and for those providers, are there some things that they might be able to do to tend to their sensory systems when they're experiencing that stress?
Lindsay And Emily (38:04)
Yes, I think
it may seem, I don't know if you do these big long shifts as well, like they do their 10 hour shifts. Sometimes they can't even go to the toilet or the bathroom.
Leah (38:13)
Yes, yes, 12 hours.
Lindsay And Emily (38:20)
And that's so your inter receptive needs are already out of whack. And you're just like, I mean, as a therapist, I walk in, I walk out, I'm in charge of my little caseload. It's, it's, and so that's, always teasing me on my job going like, you've got the best job, Emily. Like, I know, because I can, you know, my, my sensory needs are met. I need to go and get water. I go get that water, you know, but, but for
Leah (38:36)
you get to go to the bathroom. High standards.
That's right.
Lindsay And Emily (38:45)
The staff often you're waiting for someone to pick up on your cues to go, my gosh, are you not all right? Do you need to have a little bit of time? there isn't just crack on. it's they, they haven't, feel for my neonatal nurses, they have had a really hard deal for many, many years. Certainly in the UK, they were asked to keep the baby alive. And then we said, development matters. Could you also do the development? And then we went, hmm.
Leah (38:55)
Mm.
Lindsay And Emily (39:13)
parental mental health matters as well, can you do that? And if you looked at every other ward in the hospital, they had a multidisciplinary team to help them. And for many, many years, the neonatal nurse was like, my God, I got to do all of this. And that's why in the UK, it's the highest for burnout. But to go back to what you're saying in terms of your sensory needs, things like natural light matters. In the UK with NHS, we have these cheap little lights in our ceiling, which flicker all day long.
and that flickering is just going to hit your brain stem and just exhaust you. so having those lights off and having natural light is going to be better for the babies as well as you, as well as the parents. Thinking about the sound, we're using our church voices or our library voices. One of my nursing colleagues was like, it's our angel voices. so that's basically, I know angel voices are nice, it's quiet. We're not shouting.
Leah (39:47)
my goodness.
Aww.
sure.
Lindsay And Emily (40:10)
And if we are doing lots and lots of skin to skin, those alarms are not going to be going off. If we are not doing lots of skin to skin, those alarms are going to be going off and that's why we need to silence them. But it will wear you down if you have all that noise and all that light and all the noxious smells coming at you 24 7 and you're not even allowed to go to the bathroom.
it's it will it will weigh down it will bear you down weigh you down so it's why when we're looking at sensory needs you have to look at the age appropriate sensory needs of the baby we need to look at the sensory well-being for the parents because we are asking them to turn up every day in very very frightening stressful traumatic environment and we have to look at the sensory well-being of the parent of the staff because well we need them to keep these little people
Leah (41:00)
Right.
Lindsay And Emily (41:06)
alive and you can only do that if you're focused, know, if you've got your A game not broken by everything. But the interesting thing is for the most part those sensory needs are not so very different for everybody in that system. There's lots of commonality that calms everybody, maybe the parents, staff.
Leah (41:07)
Right.
By the stress,
Sure.
Yeah.
Yeah.
Lindsay And Emily (41:35)
And
so, you know, there could be some fairly quick wins if we become really sensory focused on what's going on in the sensory world of the neonatal unit, both physically and then think about from a psychosocial, from a psychological social perspective. Again, there's commonality and similar needs. We all need
Leah (41:48)
Yeah.
Right.
Lindsay And Emily (42:04)
Looking at relationships that are helpful, that co-regulate us, be it the baby and the parent and the staff. We all need the same thing at the end of the day. But until we label it, until we bring it up, we're not going to do anything about it. As you said at the beginning, we know about five senses, so we've done something about those. We don't even know about the other three, so we really haven't done anything about those. And it's the same for
Leah (42:13)
Mm-hmm. Yeah.
Lindsay And Emily (42:33)
the other aspects we've been talking about until we label them, highlight them. We're never going to do anything about it. So that's what's for a keen to do.
Leah (42:45)
that's what you're doing, you're doing something about
it. And that's what I love. And the other one that's not just the environment, but we know that in the NICU there's, there's like all the shiny, all the things that keep these babies alive. There's a lot of stimuli or stimulus that is painful, right? We need to do a heel stick. We need to re put the line back in. We have to re intubate. We have to draw blood. We have to confirm these things short of what you were talking about our cluster care versus spreading it out.
Lindsay And Emily (43:03)
Mm-hmm.
Leah (43:15)
I'm thinking, yeah, like heel sticks and things like that. Eye exams, oof. Knowing what you know now and with all of that, can parents also be a buffer for painful stimuli?
Lindsay And Emily (43:21)
Good yeah.
Yes, and there's so much lovely evidence to support that, but it requires a team approach. The worst thing we could do to a parent is to just say, you can manage your baby's pain and not show you how and also walk through with the doctor or the nurse who's going to be doing it to go, okay.
Leah (43:35)
Okay.
Hmm.
Lindsay And Emily (43:51)
This is is Lindsay and she would really like to support her son during this procedure. She is going to do this little hand up and she's going to give non-nutritive suck with EBM and she's going to talk softly and she's going to stay on this side. And if you prepare everybody, then they're OK. But if we don't prepare anybody, what we do is we say things like this is painful. You don't want to see this. Go and get a coffee. You're like, Lord, a lie. What? And so it's but.
Leah (44:00)
Mm-hmm.
Lindsay And Emily (44:18)
I've stitched people up in the past by showing the parent what to do but not spending enough time with my colleagues about what they're going to do and why. Because as the neonatal therapist, I don't have to do the very hard procedures that my colleagues have to do. So it's way easier for me to just go like, yeah, let's do this. So it's definitely spend time with the baby.
Leah (44:25)
I lost you, hold on.
We're still recording, so hang tight.
Lindsay And Emily (44:43)
spend time with the family and time with the staff and things that are always going to help you for the rest of your life, I'll go back to what life is like in the womb. Go back to flexion, comfort, alignment, hands to mouth, sucking and darkness. even when you have somebody there with you. So when you've had a miserable day at work, you need the same stuff. yeah, but there are some really lovely projects that are being done looking at parental participation.
Leah (45:02)
Aww, yes!
Lindsay And Emily (45:12)
and you know what's really interesting right now? I'm a really lovely little quality improvement project with our ophthalmologists right now who are super kind and patient with me, allowing me to do this with them. And it's interesting because they will know the baby is uncomfortable, but they haven't yet got the strategies or skills to do anything about it. But they'll say, sorry, darling. I'm so sorry. Almost they've used this loving language, but they're not using any.
non-sensory strategies to manage and also I have to tick is the parent present and half the time the parent is present but in the back of the room just watching and it's like I'm not allowed to say anything for this whole two weeks it is a killer but at least my teeth they're open to change they're open to like okay let's do something about this
Leah (45:53)
Right.
Yeah.
Yeah, you shared with me, you both shared with me about admission, using the non-birthing parent to support the baby at admission into the NICU, right? So baby has to be separated from the birthing parent or the mother and comes to the NICU, bringing that other parent, partner, grandmother, whoever it might be with them, giving them that job. You're gonna stand here and you're gonna do this. And I think you even said, your job is to look at the baby's face.
Lindsay And Emily (46:18)
See
Mm-hmm.
Leah (46:35)
And you need to tell me how they're doing, right? I'm gonna ask you, how's the baby? And I think that's wonderful to give them that instruction. I love that you're, I can't wait to see that data. I can only imagine, I'm not very good at staying quiet. So best of luck to you. I can't, I might be quiet, but my face is very loud, very loud.
Lindsay And Emily (46:40)
Yeah, yeah. 100 % and every so often I've gone like out of my way but and then they're like scrap that one.
Leah (47:03)
goodness. Yeah, mean, gosh, it's just, these are such important, important tips for our family, not even tips, these are like, this is living. This is what we need to be doing. This is the living of the NICU that we need for our families so that they understand that they're welcome and that we want them to be there. And so that's really, really, really helpful.
Yeah. Okay. I'm sort of all over the place. Sorry.
Lindsay And Emily (47:37)
Vital, they're vital.
Parents, they're vital. You're a parent for the rest of your days, the rest of your child's life, you know, whatever that looks like, you're always going to be the parent. you know, parenting means being alongside, doesn't it? means being there through all the challenges that come along and the highs and the lows and...
Leah (47:57)
Mm.
Lindsay And Emily (48:05)
yeah it needs it starts from conception you're together with someone right from the get-go and say that sort of is yeah very very important and I think going back to what Lindsay was saying if we don't if we don't label and name what's wrong things never change and it's probably the single biggest mistake we ever made to neonatal care was not bringing the families in sooner.
Leah (48:16)
For sure.
Hmm.
Yeah, I think where the folks at the incubator, like Dr. Courchia says a lot, you know, like and Dr. Barbeau, that we're in a really special part of medicine, which is trying to push change rapidly. So our last big one was surfactant, which was over a long time ago. And this seems to be, and I'm really happy for the global attention to this, you know,
Lindsay And Emily (48:51)
Mm-hmm. Mm-hmm. Mm-hmm. Right.
Leah (49:04)
co-occupation that is having a baby. So it's amazing. And you all have so many amazing free and subscription resources on your website that we will absolutely link for all of our listeners here in the show notes because they're beautiful and I really encourage everybody to take a look at them. I have here on my desk all of the senses and they're
Lindsay And Emily (49:21)
Thank you.
Okay.
Leah (49:31)
so beautiful.
They all have beautiful names and it's really helpful for the families too. They're explaining to their older children what baby's feeling and they need to know. They're explaining to the healthcare team. They're explaining, everybody's learning in this process. Even if we've done it before, each time is new. You don't step in the same river twice. So, every day is new. So you have so much.
Lindsay And Emily (49:34)
you
Leah (49:58)
out there that I want to make sure that folks do take a look at, you know, and there's some great little free resources on doing that skin-to-skin transfer to get into kangaroo position. Recommendations and ideas for supporting your baby's senses in the NICU, which I love. Touch and sleep, which we talked about here. Gosh, just incredible. We certainly will link these out there so everyone can take a look at them and learn. There's also courses for the
providers who are listening, because we have a lot of nurses and healthcare teams that are listening, to learn more about supporting the sensory systems of the babies and come to find out us too, because we also have a sensory system. And as we talked about before, you've worked with thousands of NICU families at this point in your careers, and your wisdom is vast. If you could share a piece of advice or a word of wisdom for a family that's right now
Lindsay And Emily (50:41)
Yeah.
Leah (50:58)
because we do have some folks listening there who are in the NICU with their baby right now. What would that be?
Lindsay And Emily (51:05)
Just that you are the most important part of your baby's care. And so what you do matters. Yeah, 100%. And looking after you is really important as well. So making sure that you have someone to help you and look after you.
The vitality you hold for your baby is huge, but we can only give and be available if we are also looked after. And so you've been on a tough journey. It's tough. you know, that's okay to acknowledge and seek out support where you need it.
Leah (51:37)
Right.
Amazing. And yeah, that's the four hugs to survive and eight to thrive. We all need it. I love that. All of us. And final question before I let you go back off on your wonderful weekend together. We use the word hope a lot for our families in the NICU. What does that word mean to you?
Lindsay And Emily (52:01)
That's it. All of us.
Gosh. That there are horizons yet to even emerge, but they will. And those horizons can be, you know, like rainbows and you'll feel all the colours of the rainbows along this journey you're on. And hope isn't always just perfect. You know, there's challenges as well, but holding on to the fact there are...
Leah (52:27)
Hmm.
Lindsay And Emily (52:49)
there are horizons ahead and there's gonna be good things that come from your journey, however different it might be. Yeah, hope is future and there's always a future.
Leah (53:04)
beautiful. It's beautiful. Thank you so much, Emily and Lindsay for joining me and us here in the Beyond the Beeps room. And thank you to everyone out there who is listening in maybe while you drive to and from the hospital or pace your floors. Or if you're watching us on YouTube, while you're pumping or sitting at your baby's bedside waiting for your next opportunity to engage with your baby. We want you to know that you are not alone.
Lindsay And Emily (53:25)
Thank
Leah (53:32)
hopefully with today's conversation you feel more empowered and inspired to help your baby feel less alone too. Take gentle care everyone.
Lindsay And Emily (53:43)
Thank you.
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