Podcast: NICU, Neonatal Intensive Care with Dr Frankie Harrison

NICU, Neonatal Intensive Care with Dr Frankie Harrison

Season 2, Episode 9

Did you know 1 in 7 babies will access care in NICU when they are born and 60% of those are born at full term.

So why don't we ever talk about what it's like to have a baby in the NICU?

This week I am joined by Clinical Psychologist (And NICU Mum) Dr Frankie Harrison, who specialises in supporting families during and after time spent in NICU through her work as a psychologist and organisation Miracle Moon.

We discuss the practicalities of caring for a baby on NICU from feeding to dressing them, bonding to going home; but with a strong focus on the emotional experience of being a NICU parent, both in the short and longer term.

This September is NICU awareness month, given just how common it is to experience time on NICU, this episode is a must listen for all parents to be- just in case you ever need it!

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TRANSCRIPT

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I know right now you have no idea what to expect from birth, what it's going to feel like, how it's going to pan out.

And so what you thought was going to be this glowing experience of pregnancy has turned you into a bunch of nerves.

Well, you were in the right place because I am here to hold your hand as you prepare for the birth of your baby through the birth-ed online course.

The course that gives you the information you thought you were going to get from your antenatal appointments and didn't.

The birth-ed course opens your eyes to everything you need to navigate your pregnancy and birth choices so you can feel confident, informed, and ready to take back control.

Available worldwide for just 40 pounds or $50, sign up now via the link in the show notes.

This episode of the birth-ed podcast is proud to be sponsored by Elvie, makers of the Elvie Pump.

I bought and used the Elvie Pump after my second baby was born last year, and I couldn't recommend it enough.

I'll share a little more about my experience later in the show.

But if you'd like 15% off Elvie Pump single and double, the smallest, quietest, smartest breast pump on the market, you can use the code BIRTHED between now and the 30th of September.

This discount code is not available in conjunction with any other offer.

I'm Megan Rossiter from BIRTHED, and you are listening to the birth-ed podcast.

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Ready to meet today's guest?

Hi everybody, welcome back to The birth-ed podcast.

In today's episode, we are going to be taking a deeper look at NICU, which is Neonatal Intensive Care Unit.

And I am joined today by Dr.

Frankie Harrison.

Frankie is a clinical psychologist, a NICU mom herself and founder of Miracle Moon, an online platform supporting NICU parents through online support, individual therapy and online courses.

Frankie, thank you so much for joining me today.

Thank you for having me.

It's lovely to be here.

So I suppose maybe like a helpful place to start.

Would you mind telling us a little bit about your story, how you kind of got to this place work-wise, parenting-wise, where it all started for you?

Definitely.

So I guess I started out training to be a clinical psychologist, qualified in 2016.

And I actually started working with older adults.

So that was where I was kind of working.

I was working in an inpatient unit when I got pregnant with my first child.

During that pregnancy, it was quite turbulent, I guess.

I had various things that kind of went wrong that I wasn't expecting to kind of go wrong.

I experienced kind of pain and bleeding, things like that, which was really tricky.

And it got to about the beginning of the third trimester and of the second trimester for me.

And I started to experience symptoms of preeclampsia.

I didn't know it was preeclampsia at the time.

So for me, I experienced things like swelling and I had some different kinds of pains, like head pains and things like that.

And I was in hospital for about a week trying to get my blood pressure down.

No one told me about NICU.

No one told me about prematurity.

No one talked to me about that kind of thing while I was in the hospital.

I went home and then had to go back in because all of my symptoms had escalated more.

And that's when people started talking to me a little bit about delivering my baby and what that would look like.

But it took quite a long time to get to the point where I was informed of what would be happening and what it would look like having a baby kind of prematurity or in NICU.

So I was 31 plus one and I had my little boy by emergency section and he spent five, six weeks in NICU.

We had an okay time while we were there with regards to, we didn't have any kind of huge procedures.

We had issues with feeding, a little bit of issues with breathing, but it was mostly about him growing and getting stronger.

When I left neonatal intensive care unit, I experienced quite a lot of postnatal anxiety, which again, I wasn't too sure about that because I hadn't heard it spoken about.

I had kind of postnatal depression being spoken about quite a lot.

But in terms of the anxiety, I didn't recognize it in myself.

And I started kind of looking into it, and I started looking into connecting with other parents who had been through NICU and who had premature babies.

And I found Instagram to be a really incredible source of support, actually.

I connected with another mum who also had her baby at 31 weeks, and we started talking.

Her name is Georgie, and she's a graphic designer.

And we kind of said, you know, we could actually create a little bit of a community here where we're supporting people, where we're talking about our experiences and where we're able to offer some kind of psychological information and where she's able to do the kind of graphic design around it.

And we started up Miracle Moon together.

It's now kind of progressed over the past two and a half years where I've kind of further trained into working in that kind of perinatal periods and supporting parents through NICU themselves and from when they're home.

So I didn't go back to work.

I didn't go back into the inpatient unit, and I just completely kind of changed what I wanted to do and how I wanted to do it to support NICU parents.

So I guess that's my story of how I got here.

Amazing.

And yeah, I mean, it's sort of heartbreaking and wonderful that you've been able to create something that is so helpful to so many people and that has shaped your life, but out of what was a kind of really difficult experience for you.

So I'm really interested to hear like a little bit more about the kind of the support and the work that you do as we chat through the podcast.

So the kind of the main support that you guys offer is kind of psychological support.

So when we're chatting today, we'll talk through the kind of like the practicalities of what somebody might expect of having a baby who's on NICU or special care, but with a kind of strong focus on like how you can support yourself emotionally on that journey.

So thinking about families accessing NICU care more generally, do you know sort of how many babies are admitted to NICU each year?

How likely is it that somebody might face this?

So overall, so Bliss did some research and kind of gathered data on this.

Bliss are the charity for supporting, a big charity for supporting NICU parents and babies.

And they found over 90,000 babies are cared for in the UK every year.

So that's one in seven babies who were admitted onto neonatal intensive care units, which I don't know about you, but for me, that felt a lot more common than I thought.

And for the fact that it's not spoken about, that's really one person in an anti-natal class at least, that is experiencing that.

So I think the other misconception is that all babies that go into NICU are premature, but actually 60% of them are termed as well, which again, I think is another thing that surprised me.

But you're either kind of going on to the neonatal unit with a premature baby, so that's before 37 weeks, or you're going on to the NICU unit with a polyterm baby.

And they're the kind of two reasons why you would go on to the NICU.

Yeah, and I suppose the amount of time that somebody could spend there, that could be anything from a couple of days to several weeks, several months, even.

And what are the kind of main reasons that babies are admitted to the NICU?

Are there kind of themes that are the kind of the main reasons?

Yeah, so it's either prematurity and all that comes with that, so health issues or needing time to just grow and develop, maybe needing surgery and things like that if they're really poorly.

But then for term babies, it's respiratory conditions, infection, hyperglycemia, jaundice, or having like a restricted flow of oxygen to your brain.

Those are the kind of main reasons why a baby would be admitted.

So some of them are known about before, but some of them aren't known until you're at the point of kind of birth or around that point of needing a NICU stay, which I guess again is why it's so important to talk about so that people are aware that it's there because there's so many people in the community that I've spoken to who have gone, I just didn't know what it was or anything about it.

And I think that shock was the thing that was incredibly traumatic, I guess.

Yeah, I think probably one of the reasons why it's missing from so much of the kind of conversation is that obviously kind of all of your antenatal care is run by essentially the maternity unit.

And obviously the NICU is actually it's kind of almost whilst it's kind of integrated, it is sort of a separate department in that it's kind of staffed by neonatal pediatric nurses, pediatricians and neonatologists rather than the kind of midwives and obstetricians who are sitting kind of in the maternity unit itself.

So my my sort of only experience of NICU was like literally like a two week placement and it was actually a special care unit.

So SCUBU they call it.

Are you able to kind of just explain what the difference is between NICU, SCUBU and the because not all hospitals have a NICU in quite such the same way, do they?

No, so it depends on the level of care.

So you've got SCUBU, which is special care.

So that isn't for babies who need that kind of intensive care.

So that might be for babies that are born after 32 weeks and they just need that space to be able to grow or just need that monitoring for like oxygen, temperature, blood sugar, those kinds of things or tube feeding.

And then you've got level two, which is like a local neonatal unit.

So that is higher medical and nursing support there.

And that's usually between 28 and 32 weeks that a baby would kind of go there.

More kind of intensive support there.

And then you've got your neonatal intensive care unit, and that's for babies that need the highest level of support.

So they will have been born maybe before 28 weeks or be really poorly and need quite a lot of operations and support at all kind of diseases or severe infections.

So it kind of grades in that way.

And different hospitals have different levels.

So it depends on what your local hospital has kind of available.

It might be that if you had a baby really prematurely or really poorly, it might be that you would need to be moved to a different hospital so that they can be supported in the right kind of environment.

Yeah, and we can talk a little bit more about the kind of the practicalities of that a little bit later.

So going back to the kind of the moment of birth, are you able to kind of talk through what does that look like?

So whether you knew baby was going to be going to NICU or not, let's presume they've been born either vaginally or by cesarean.

What happens in this kind of immediate post-natal period?

Where do they go?

Who is going with them?

What do you get to see them?

What can we kind of, what could somebody expect if they were, if they knew baby was going to be going to a special care area?

So I guess it's really tricky because it's really individual, isn't it?

And everybody's got their own experiences.

So some people, they get to see their baby.

Some people even get to hold their baby first.

It depends on the condition of their baby.

So normally what will happen is you'll have doctors.

You might have a few, a few doctors, a few health professionals in the room.

If there's risk attached to what's going on for the baby, it might be that you get to see them.

It might be that they need to stabilize them first, and they might do that in the room.

Or they might just say that we need to take them straight to the neonatal intensive care unit and do kind of stabilization there with their kind of breathing is the main kind of one with kind of heart rate and things like that.

Hopefully you get to see them.

So I saw a kind of glimpse of my baby, but then he was taken away by doctors and nurses to NICU.

My husband was told that he could go with the baby.

I was having a section, so I was on the table so I couldn't go, but he was allowed to go in between me and the baby for the period of time where I wasn't allowed on the unit while I was in recovery.

And that is, I think, the most common practice.

COVID affected that in terms of, you know, for some people having to kind of birth on their own or not allowing partners into the neonatal intensive care unit.

But I think that that is now getting more, that's changing now, as it should do.

I mean, looking back on the period and the stories that came out of families that were accessing Niki during that time, like just the lack of common sense in terms of a lot of the kind of guidance and policies and things that were put in place is absolute madness.

But really hoping that we are kind of on the other side and that there's been some kind of huge learnings that have come from that period, I hope.

So, I mean, that must be like an incredibly, whether you're expecting that to happen or not, like emotionally at that moment in time, either, I mean, simply just being separated from your baby after like, you know, eight months, nine months, seven months, however long you've been pregnant, you know, having them with you all the time and then suddenly being completely kind of separated from them in the space that you're in.

And then potentially your partner now being with your baby, how do you like process that decision of who should your partner be with?

Should they be with you?

Should they be with the baby?

Is there, do you have any other kind of emotional support?

Like, is there any way of preparing for that moment or probably not?

I think, and it's the same with actually just being in the unit generally, you just do what you need to do in that moment.

So you kind of say to yourself, like, who needs the support more at this moment?

And I think you know yourself as a mum, like whether you need your partner to stay with you or whether you want them to be with the baby, I wanted my partner to go with the baby at that moment, because I felt like I was generally okay.

I was also allowed my mum to come in and sit with me while I was in recovery, so she was there with me while my husband was with the baby.

So that worked in our kind of case.

I know that there are some incredible staff who are available and around and who will kind of come and sit and chat with you and kind of hold your hand and just make sure that you're okay.

I guess it's, again, different for everybody in terms of what you feel in that moment, and you might prepare for it and feel completely different at that time.

And it's just about, I guess, waiting until you get to the point where you're able to go in.

And really, so for me, so I was in recovery for a little bit of time, but then the focus very quickly became breastfeeding, when I actually wasn't able to kind of breastfeed itself for weeks.

But it became expressing and expressing, hand expressing colostrum and doing that as quickly as I possibly could so that I could get milk to the baby and get it delivered to the baby.

So that then became my focus really quickly, I guess.

Yeah.

And had anybody like anti, because obviously it was sort of semi planned, you know, with at least a kind of a little bit of notice.

Was this a conversation that had come up for you anti-natally at all?

Or is it a conversation that no, no, no, no.

I suppose that's like a really important thing if people are listening to this.

I talk a lot about kind of colostrum harvesting and things that you can do to kind of prepare for the unexpected.

And often it's kind of recommended from, I say from kind of 37 weeks of pregnancy, I would always, if you are able to and you feel happy to, and you want to breastfeed, colostrum harvesting, anti-natally can be kind of really helpful for even just simply difficulties with breastfeeding, but if there were any unexpected things like separation from baby.

And obviously, if it was a situation before 37 weeks, but you knew baby was going to be born, would you think that would be a kind of helpful thing to have had a conversation about before baby was born, or was your mind just kind of totally elsewhere?

I think it depends at what kind of point, because at 31 weeks, I hadn't done anything anti-natally.

I hadn't done any classes or anything like that.

My NCT class was actually supposed to start the weekend that I gave birth.

So I hadn't had any thought about how I wanted to feed my baby or what that would look like.

So it's kind of figuring out at what point do you start having that conversation, which I think is really difficult.

But if you have any kind of planning period where you're able to have some kind of awareness of what's going to happen, I think having conversations about things like feeding is incredibly important.

But I also think it's really also important to be aware that if you're experiencing a premature birth or your baby in NICU, that that stress and trauma that can come with it can impact your milk supply as well.

So people kind of feel like they're failing or feeling like they're not getting enough milk, but it actually might just take a little bit longer for that kind of milk to come in because of the hormonal change that you're having and the level of cortisol that you've got kind of running through your body as well, which is really hard.

Yeah, and just separation from baby and expressing over them kind of actually being able to kind of suckle.

All of those things are going to impact a kind of a feeding journey.

Let's chat a little bit more about feeding in a minute, but are you able to just talk us through it?

Like, what is NICU like?

What is the environment like?

What are you likely to see?

What does it kind of feel like to be in there?

Yeah, it's very clinical, I guess, as an environment.

So my first experience was kind of being wheeled in after a section, after about 12, 15 hours, after having my baby.

And loads of isolettes, so incubators, where all of the babies are sleeping is quite quiet in terms of people keeping quiet for the babies, so not to over-stimulate them.

The babies quite often have a cover over them, so that the environment is kept dark.

What they're trying to do is, especially for premature babies, is still replicate that womb environment a little bit.

So they're keeping it kind of quiet or muffled, dark, warm.

They've got special pillows and stuff like that to hold them in set positions and things like that.

There are lots of machines, so there are lots of beeping noises going off that you don't particularly know what all of that means, which I guess can be quite daunting to start with.

But they're monitoring things like heart rate, oxygen rate, and there's tubes and stuff like that.

So mostly a lot of babies are fed with NG tubes, so nasal gastric tubes to start with, or they have things like IV lines.

So your baby is kind of normally covered in a bunch of different kind of wires and tubes for monitoring to start with.

And lots of parents sat by beds.

Some babies kind of on their own, while parents aren't able to kind of be there.

Lots of different types of rooms, depending on what level of care those different babies need.

Lots of nurses, medical professionals being around, who are incredible and very, very kind.

And kind of do their best to try and support you in becoming a parent, I guess, in that environment, when it feels completely alien to do that, I guess.

Yeah, I bet.

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And what about kind of day to day, like handling baby, touching them, picking them, taking them out of the incubator?

Like, where do you sleep?

Where do you sit?

Like, what about what does your kind of standard day of being with your baby on Niku look like?

I think you get into the swing of it.

So at the start, I think you just don't know what to do, whether to hold them, how to feed them, anything you don't really know.

And you learn that process through the nurses or by watching other parents and what they're doing.

So I remember kind of going in and just sitting next to the incubator.

If you're lucky, you get a comfortable chair.

So I was sitting next to the incubator and just watching and saw that another mum was kind of changing her baby's nappy in the incubator, kind of with both hands in the incubator, changing the nappy and me saying, can I do that?

And they were like, yes, you can.

So then they taught me like how to do it with all the wires and stuff like that.

And my husband was actually the first one who changed nappy.

He was the first one who administered a feed through the MG tube, but they get you to be involved in the cares as much as possible and monitoring yourself as well as you get into it.

So by the end of it, I was doing things like temperature and monitoring and doing all of the feeds through the MG tube or trying to breastfeed.

I was doing all of the nappy changes whilst I was there.

So it was like I was looking after my baby as much as I could.

You aren't allowed to take them out of the incubator on your own.

You have to ask for permission to do that.

At the beginning as well, I kind of asked for permission as to whether I could put my hands in the incubator to kind of hold him.

They tell you that you're not allowed to stroke them because that can be overstimulating for the baby.

So just placing your hands on them and doing kind of containment holding is what they talk about.

And then you get to the point where, if the baby is kind of stable enough through kind of breathing, that then you're able to do, and they call it kangaroo care.

So where you hold your baby on your chest, but you've kind of got all the wires and lines and things like that there.

But the kind of research that is current now is that that is the best place for your baby on you.

So I guess some nursing staff still think the baby needs to rest and needs to be in the incubator, but actually the place of healing is on you.

So if they can do feeds, cares, monitoring whilst the baby is on you, that's the best thing that you can do.

Yeah, I mean, when you understand what benefits skin-to-skin has, and the fact that they were inside your body, it does make perfect sense that on you, on your body, is going to be the most helpful place for them to continue growing and the new growing and everything.

Let's talk about where you sleep, where you stay.

I think a question that comes up for a lot of people is, can I stay?

Can I be with them 24-7?

Yeah, it depends on the unit, but the majority is no.

So you are an inpatient yourself still on the maternity ward.

I was, because I was having my blood pressure still monitored for a further kind of week, 10 days.

And I remember kind of crying and saying, I didn't want to go home because I didn't want to leave.

And they had the bed space available for a couple more days for me to stay.

So it's always worth asking if you can do.

And when you're in, then you can go to baby 24-7, sit by the bedside.

Whether you want me to.

Yeah.

And so there are people who just sit by their baby all the time.

There are people who kind of go back and have a sleep, go back and have some food, have a walk.

And it really is what you need.

There's no right or wrong with that.

For some people, they have units where you're able to stay.

So my unit had a couple of beds, but they were for people who were in what they call transitional care.

So that's the period of time when they're getting ready to go home.

And prioritise people who are breastfeeding because you're trying to establish breastfeeding and feeding every three to four hours.

So you need to be there to be able to do that.

So I was able to stay at the end and I was able to stay at the beginning, but there was a chunk of time in the middle where I was having to leave, go home, stay at home and come back.

And that is, I suppose, quite usual for most Niki parents to have at least a period of time where they aren't staying in the hospital and they are sort of going home.

And on the flip side, there will be people who have other children at home who are, and families who, you know, I think there's been some news recently that it's going to change, hopefully, but, you know, partners that either don't get parental leave or get maybe two weeks' parental leave, paternity leave or other parental leave.

You know, that is incredibly difficult.

If your baby is spending several weeks in Neuquen, you've got to go to work in the day, or you have to go home and care for your other children in the day.

Do you have any kind of tips from people's experience on how they manage that, both kind of practically and emotionally?

I think it's being aware of the fact that leaving your baby in a hospital and having to drive however far it is away to wherever you're staying.

Some people stay in hospital accommodation closer, some people go back home, it depends where your baby is.

But that process of leaving the hospital is incredibly hard.

It's not how you imagined leaving the hospital.

It's not that picture that you have of leaving the hospital with your baby in that car seat.

So I think it can be super painful, and it is something that I think sticks with parents for a long time after.

So that then when they're having to leave their baby, when they come home or start nursery or things like that, a lot of those feelings can get brought back up again.

So I think that that is something to speak to is that it is incredibly hard.

One thing that I found quite helpful was having a structure with it.

So times that I would be at hospital and what that would look like.

So I would go at a certain time in the morning and I would stay till the evening, and then I would have a goodbye routine.

So I would do like reading the book, I'd say good night, have a cuddle, and then I would kind of go good night and I would then kind of leave.

So it almost felt like it was a bedtime.

In that kind of way, and that helped me, because then I knew that he was being kind of supported.

You go home and you're having to kind of express and be up in the night kind of doing that anyway.

But it's important to get that rest, even though that feels really difficult.

Yeah, I mean, I can't eat, exactly as you said at the beginning, because you don't talk about it, that you can't even imagine, that you cannot even picture in your head kind of what that would feel like, what that would look like practically.

And anybody I know that's kind of been through, Nikki, you do exactly what you need to do at the moment.

And then I guess it kind of hits you like a ton of bricks, kind of as you get to the other side of it, that kind of you've been in total survival mode.

And then you realize, wow, like what we've just done, what we've kind of been through, what our sort of start to parenthood was like, that's like insane levels of bravery.

So anybody that has kind of managed that, well done.

I think a question that kind of came up for a lot of people is just kind of like, we talk a lot about kind of pregnancy and birth, being involved in the decision making, the kind of care that is being given to you or kind of to your baby.

What does it kind of feel like to try and be involved in those decisions?

How involved in those decisions are you when your baby is potentially very kind of unwell?

But how do you kind of advocate for yourself for your baby?

How do you understand what is being offered or recommended?

And how do you kind of keep yourself involved in the decision making around their care?

I think it's really tricky.

And I think that this is something that quite often people feel a lot of guilt about retrospectively, because when you're in it, and you've not heard of it, you don't know anything about kind of the medical conditions or what that's supposed to look like.

You can kind of just go along with what they're saying because they know best.

You're not sure whether you should be doing the advocating or challenging, but you can be involved in that kind of decision making.

And I guess, you know, doctors and nurses who are really good, they involve you in that decision making.

So making sure that you are available for ward round, and I always make sure that I was.

I wrote down everything that they said.

Can you just explain what ward round is for anybody that doesn't know?

Yeah, so ward round is where you have a number of different medical professionals who are looking after your baby.

So it might be the consultant, it might be junior doctors, it might be nurses, or whoever else is involved.

So it might be OTs or physios if they are involved as well.

And they come to your bedside where the baby is, and they talk about the care that that baby needs for the next kind of 24 hours.

So they will make decisions about things like feeds, about oxygen levels, about procedures if procedures are needed, monitoring, all those kinds of things.

So they will review the notes, they will assess the baby, and then they will, normally there's quite a lot of discussion between them to start with, but then it is absolutely okay for you to ask them to talk to you.

It's absolutely okay for you to say, I don't understand that, can you explain that a little bit more, or can you give me some more information, or I need to write that down so I can think about it, or saying things like, can I have a little bit of time to think about that, if that time is possible?

So they will quite sometimes give you an option.

So I remember them talking to me about feeding, and they were talking about my baby going on TPN, which is a type of feeding that kind of goes through bloodstream rather than milk feeds, because my baby wasn't tolerating feeds with his stomach, with being so premature.

And they were talking to me about what my options looked like with that, whether I wanted to continue with the milk feeds or whether I wanted to move on to this TPN thing.

And I was like, I don't know anything about what that is.

Am I able to have a little bit of time so that I can figure that out?

And they said, yeah, that's fine.

So I did some reading about it, and then I was able to make help with that decision.

But ultimately, they're the medical professionals in that instance.

So I kind of trusted them with that, I guess.

Yeah, but I think that is really helpful just to know that actually, you know, it's your baby and you are the one that consents to things.

And so being involved, if you want to be and kind of feeling able to, I mean, potentially quite difficult, but certainly something that you can be.

We have touched kind of on and off now about kind of feeding baby.

Would it be right to say that the kind of the majority of babies that are in NICU would be kind of strongly encouraged to receive breast milk?

Yeah, so they talk about the importance of breast milk and in terms of being able to help with that healing process for your baby.

So the majority of moms are encouraged to start pumping.

And kind of they talk about being able to even if you can just do that for a short amount of time that it can have a positive impact on your baby.

But for some people, whether it is through the kind of levels of stress or milk not coming in or choice that they don't want to do it, then formula feeding is absolutely an option there as well.

I think that's something I suppose it's kind of misunderstood when we think about kind of breastfeeding is that I think sometimes we present pumping as like, oh, this just kind of like really easy thing to do.

Like pumping, whether your baby's in NICU or not, it's really hard work on top of like caring for a baby, physically recovering from birth and navigating all of the kind of emotions and things that would come with a baby in NICU.

Pumping also is like a full-time job.

Because especially if you're then trying to be involved in actually then feeding the milk to baby and they're not being fed directly from the breast, then you're pumping and you're feeding.

I'd say, I think, you know, I haven't got experience of it from a kind of NICU perspective, but lots of experience kind of supporting ones that are breastfeeding.

And there is this kind of a sort of myth, I think, that expressing would be a kind of easier thing to do than breastfeeding.

And I don't, just to kind of reassure people that if they found that hard, like it is hard and often as hard or harder than actually kind of breastfeeding.

I found it a lot harder, the admin that is involved with pumping and just things like, you know, having to kind of sterilise all of the kind of equipment, making sure that your breasts are drained so that you're not getting mastitis and clogged ducts.

That bit about, you know, emotionally having to do that away from your baby as well, and kind of, you know, talk about bonding with a breast pump before bonding with your baby is incredibly, incredibly difficult.

And, you know, if you can kind of picture it, it is normally that you're sitting away from your baby, trying to kind of express, work out this machine that you've kind of been given and kind of figure out how to use it, and you're given usually like a piece of cloth that is supposed to smell like your baby.

And your baby has the other cloth that is supposed to kind of smell like you.

So you wear one and they have one, and then you swap them every time that you do a kind of pumping.

And you're sitting there and you're kind of just smelling this piece of cloth that's supposed to smell like your baby, maybe looking at some pictures that maybe your partner sent you or something like that, so that you can gain some kind of connection.

But that disconnect is really very difficult.

So if you're able to do that bit of sitting next to the incubator and pumping, that can have a positive impact on milk supply, touching your baby while you're pumping.

But I think also the difficult thing is that while you're wanting to pump, you're also wanting to hold your baby.

So that was the bit that I found quite difficult, because I at the beginning was wanting to hold my baby as much as I possibly could, but then you're having to pump every kind of three, four hours.

So then it meant that I'd have to put my baby down.

And then they would often say, no, don't pick them back up again, because we don't want to be putting them in and out of the incubator too much.

So you're kind of like, oh, I want to be able to kind of feed, I want to be able to pump, but I also want to be able to hold my baby.

So making that choice was really difficult.

Yeah, that's really tough.

I think just in terms of kind of understanding some of the things that you mentioned about what we can do to kind of maximize milk supply.

So in order for breast milk to be made, we need to be producing this hormone called oxytocin.

Oxytocin is basically our love hormone or happy hormone.

And so when you are feeling kind of stressed and worried and concerned, you can see why the production of oxytocin might kind of be inhibited.

Oxytocin is produced much more when we are with our baby.

So if we are separated from them, if we are at home, if we're on the maternity ward, wherever we are, if we're not feeling, touching, smelling, holding our baby, then again, you can see why that oxytocin production might potentially be lower.

So some of the things that you mentioned, just to kind of summarize them in case people are in that situation, like photos and videos of your baby, if you cannot be literally right next to them, but whenever you can be actually going to their bedside to do the pumping, being close to them, touching them, holding them, all of those things are going to kind of maximize production of oxytocin.

Also, anything you can do to actually relax a bit, like choosing moments where actually, get a cup of tea, chill out, and then get yourself kind of comfortable and relaxed, rather than kind of doing it when you're kind of feeling rushed or after a difficult conversation.

And it's a...

Breastfeeding is a hormonal process in the same way that labor is a hormonal process.

So it is impacted by kind of outward influences, I suppose.

Yeah, you can make that space next to the incubator your own space.

You can personalize it.

You can have things like bring your iPad in, watch something comforting.

You can bring in tea and loads of snacks, like a bag full of snacks that I just had next to me all the time.

And bringing things that you find particularly soothing or calming that you can engage in next to the incubator.

If you feel like you're able to do things like reading or if you do something like crochet or stuff like that while you're sitting there, because there is a lot of time where you are sitting next to your baby or maybe not able to hold them as well.

And just creating a bit of that space can help with that, kind of relaxing into it a bit more.

And say another question that kind of came up for people was just the kind of like the practical stuff.

Their nappies must be tiny.

Where do you get the nappies?

When do they wear clothes?

Yeah, so nappies are tiny.

So pretty much all supermarkets have premature baby nappies.

The unit will provide some, but then we'll ask you to kind of bring in nappies as well.

But if you run out, they will supply them at the hospital.

I know that ASDA is starting to do free giveaways of really premature baby nappies as well at the pharmacy.

So that's worth knowing.

Things like clothing, it's really hard to know what size you're going to need with your baby because it's mostly when they leave the incubator and go into an open cot that that is when they need clothes.

So you don't know how big they're going to be at that point.

So for me, it was a kind of they're ready to go into a cot, and then you're like, OK, what size are they?

Do I go?

I need to go and get some clothes.

And again, a lot of kind of supermarkets now have premature ranges.

So that's really, really good.

But then you're kind of looking at vests and baby grows and things like that, that will accommodate all of the wires, which is quite tricky.

And for me, it was like my baby moved into a cot, and I wasn't aware that that was going to be happening that day.

So I walked in.

He wasn't in the incubator.

I was like, where is he?

He was in the cot and he was dressed.

So I didn't get that process of dressing my baby for the first time.

So again, knowing that, I wish I'd known that.

I wish I'd been able to communicate to the staff.

I really want to be involved in as many of these first as I possibly can be.

And I think having that conversation is super important.

But again, the units have things like clothing, and they have so many wonderful, like knitted cardigans and knitted hats that people knit for the units.

So we've still got a bunch of really tiny little knitted cardigans and stuff like that that they used.

But so they do have things there if you don't have them, if you're not prepared.

Yeah, I think that's just a really, I'm so sorry that you missed that moment.

But I think that's, they're the kind of tips, aren't they, that actually if somebody hears that, and now they can go, I'm going to make sure that I absolutely kind of say that and ask that.

And you know, if that's happened to you, then feed that back to the unit, because I can't imagine anybody would want to miss out on kind of little, those little moments are really valuable when you're kind of having separation from your baby.

So anything that you can ask for or kind of reach for, for little kind of milestones or kind of touch points along the journey, absolutely, definitely kind of important things to make sure you can ask for.

I realized I kind of skipped over this bit and I just want to jump back a little bit.

So baby having NG feeds, when did that change to either bottle feeds or bringing baby to the breast, trying to establish breastfeeding?

What did that look like for you or what does that look like for people?

So again, I think it really depends on the staff and the information that they have the knowledge that they have with regards to feeding.

So for my baby, I think I could have brought him to the breast earlier, but was told not to because it would exhaust him.

But now from my kind of reading and research around that, you can bring them to the breast, kind of one they're able to kind of breathe on their own kind of stable, in that kind of stable way.

I from, I guess it was maybe about 33 weeks old, that I started trying, but he would just kind of, you know, come to the breast and just kind of lick it a bit and just be like, what is this kind of thing?

And then it got to the point where he was then able to kind of latch, but it took a really long time for us.

So we actually went home with the MG tubes still in and still doing the milk feed stream there.

But I had to show that I could do two breast feeds in a row because the process of getting to hospital, if he pulled his MG tube out, I'd need to go back into hospital to get that fitted again.

So I needed to show that I could feed him in another way before going home.

So to make sure that he had a supply of milk, I guess.

And again, that depends on your hospital.

So for me, we had an outreach team who were then coming and seeing us every other day to check like the MG tube to help support with feeding and kind of getting on to breastfeeding a little bit more.

Yeah.

And so I imagine that kind of breastfeeding support is important, even when babies are kind of born healthy and full term.

So that kind of real one-to-one support with getting that established if somebody really wants to breastfeed would be kind of very, very important, I suppose.

Yeah.

I think a lot of people feel pressure to, at that point, though, when they're talking about coming home, is doing bottles, because you can see how many mils your baby is having.

And, you know, there was a feeling for me in the hospital where feeding was the last thing that we needed to do.

And I remember being like, should I just give him a bottle?

Because then you can see, and then you can see that he's having it and things like that.

I didn't in the end.

But I know that a lot of people do feel that kind of pressure, which is really tricky to kind of navigate in that setting, because you just want your baby to come home.

Yeah.

Yeah, but also is OK.

It's your parenting journey.

We often think, I always say this, we think of pregnancy and birth and then parenting as these three completely separate events.

But actually, the way that we parent a newborn is going to be influenced by the way that they were born.

The way that we parent a toddler is going to be influenced by our kind of journey with them as a baby.

So we can have thoughts and ideals and absolutely hold on to them if they still feel important to you.

But we are also allowed to kind of change our minds.

Say, you know, absolutely seeking out the support to do what is important to you.

But if you also want somebody to say, you can change your mind, like you absolutely can, and that's not a reflection of anything that you're doing wrong or right.

And you know, you don't need another thing to be feeling guilty or concerned or worried about in those early moments of kind of parenthood.

So getting to that point then, that kind of going home process, you mentioned the kind of like bedding in rooms where potentially people might stay with their baby kind of overnight in this final few, the final week or final days before they go home.

What about the kind of actually going home for the very first time?

This must be, you know, I've only taken one baby home from hospital.

The other one was born at home.

But coming home from hospital, remember putting our first born baby on the bed and being like, what do we do with him?

And we didn't have any like health concerns or anything at this point in time.

So what is that?

What is that like?

And how do you navigate the first night, the first couple of days in, you know, you've had so much support around you in terms of kind of like somebody monitoring baby's health.

That must be really difficult to then feel kind of like you're going it alone for the first time.

Definitely.

And I think a lot of people talk about, which again maybe isn't spoken about, but people say that they don't want to leave because you're in this environment where your baby's safe, where your baby's being looked after and where your baby's being monitored.

So going home to a place where they are not having that and it's your sole responsibility can feel incredibly daunting.

So I think it's just worth normalizing that there are so many feelings that come with that experience of going home, you're excited, you're anxious, you don't want to be there, but you equally want to be there.

And there's so many of those kind of feelings that come up and all of them are okay.

I remember kind of feeling super excited, but also being a kind of feeling like I was kidnapping him.

So it didn't quite feel like I should be taking him home.

And I guess I was kind of like as we were in the car going home, driving incredibly slowly, because he was still like four pounds, so really, really small.

I remember kind of being like, are they just going to ring us and tell us that we need to take him back?

And that kind of feeling can stick with you for a little while of, are we going to have to go back?

I guess for some people they do, if there are other kind of health issues, they would have to go back to a children's ward or stuff like that.

But hopefully you're at home and you're kind of looking after your baby at home.

That period of kind of overnight and sleeping next to your baby, I think, again, you're still running on anxiety for the majority.

You're still in that fight, flight, freeze, fawn mode, whatever you're in, kind of survival mode.

So I think that's when the kind of, for me, the anxiety kicked in bigger was when I was home.

While I was in the unit, I was kind of doing that bit of get on with it, focus on every single day, and you felt like you were supported and being looked after and stuff like that.

But then I got home, it was just me.

And that anxiety kicked in, because, of course, it did.

It was trying to help me protect my baby.

But it was doing it in a way that felt, I guess, scary for me at that time.

Yeah, I can imagine.

I think just an important thing that Frankie and I have sort of discussed before this podcast is to just acknowledge that not all babies do make it home from NICU, and we didn't want to kind of pass this over in our conversation.

But also we don't want to just kind of shoehorn it in at the end.

So I think we'll do like a whole episode talking about kind of baby loss.

We've got an episode on pregnancy after baby loss.

But I didn't want to kind of overlook the fact that actually some babies don't actually, sadly make it out of NICU.

And so I just didn't want to kind of brush past that, but also didn't want to kind of try and have the conversation without giving it the respect that it deserves.

So please, if you're listening, do you know that we are kind of acknowledging that situation as well.

So just kind of on that and one of the other podcast episodes that I mentioned about somebody preparing for a baby after a potential loss, what about preparing for another baby after having an experience in NICU?

Any thoughts or ideas on kind of approaching the kind of trying to conceive thing and then also actually the kind of the pregnancy itself?

Is it likely that a baby would be born prematurely again?

Is it likely that you would have a kind of second NICU experience or not?

Again, individual, so I went on to have another baby after NICU and ended up having a term baby.

I didn't have preeclampsia again, second time around.

But some people do.

Some people end up having a NICU stay again.

The thing that I found really helpful was having a birth reflections meeting.

So in that meeting, you can access that through either GP or maternity ward or health visitor.

And in that meeting, it is a kind of specialized midwife who goes through your notes with you of what happened in the process, why decisions were made, of what happened around birth or during the neonatal stay.

And during that experience, I asked the question of what would it look like having a second baby?

What would my pregnancy look like?

What's the likelihood of having a baby in NICU again?

What's the likelihood of having preeclampsia again?

And she was able to answer that for me.

So that meant that I was then able to gain as much knowledge as I could do to be able to make that decision about whether I wanted to take that risk again.

And that is hugely personal about whether you want to take that risk, whether it feels okay for you to do that, either for yourself, for your baby that you're pregnant with or for the sibling as well.

I guess you've got to take all of those things into account and your partner.

So there's lots of things that you need to kind of talk about and think about.

But knowing what would happen practically, so for me, knowing that during my pregnancy, I would be given aspirin for the second pregnancy and I would be monitored more closely.

So I had a community midwife who I saw and I just saw her every couple of weeks to do things like blood pressure monitoring to make sure that my blood pressure wasn't going up.

I had extra scans, growth scans, and I was under consultant care.

For me, that felt like I was in the best possible place and to be able to have that second baby.

And for me, I wanted to take that as a risk because I wanted that kind of second baby.

But it was really important for me to make sure that me and my partner were on that same page.

And I know for a lot of people, you're not.

So it might be that they want the baby, you don't, or the other way around.

I think it's also really important to be aware that that process of having a second pregnancy then maybe would come with a huge amount of extra feelings.

So it might be that you come up to the same kind of gestation where you gave birth first time around and having that anxiety around that, around appointments and scans and feeling anxiety around that.

So just know that it's not just going to be that kind of pure excitement feeling that you would kind of expect to have with a pregnancy.

There's lots of different feelings.

And again, kind of allowing them, talking about them, finding a space with someone to be able to kind of go, hey, I'm feeling this.

It's incredibly helpful to be able to do that.

And I guess being prepared for a number of different outcomes.

So whether that is another NICU stay or whether that is a different kind of birth.

So I was trying to go for a vaginal birth after a section.

It didn't end up going that way, but I tried to prepare that way of doing it.

But I also prepared for another NICU stay, what that might look like, and especially with having to bring in thinking about the sibling.

So thinking about kind of practical support and what I would want that to look like.

So I think that preparation helped with my anxieties, and it made me feel an element of control in a situation that is completely uncertain.

Yeah, yeah, absolutely.

And you mentioned kind of partners there, which we haven't touched on those.

I imagine a lot of the things that we have kind of talked about would be, you know, exactly the same for partners as well.

Will you, and generally, are you able to kind of both go together to be at baby's bedside?

We talked a little bit about kind of potentially people having to go back to work and things.

Through your work, or is there kind of separate support available for partners?

Is there anything that you would want to kind of communicate for somebody who isn't the kind of person that's given birth, the other parent, anything you would want to communicate with them about in addition to kind of everything that we've just spoken about?

I think, you know, there is, whilst the kind of NICU community is incredibly small, the support for dads is even smaller.

So it is, you know, very, very rarely spoken about the impact that it can kind of have on dads, but it does.

So in terms of having things like PTSD, in terms of having kind of that postnatal depression and anxiety, dads can experience all those kind of things too.

They're experiencing all the kind of similar things being in the unit and experiencing maybe like birth trauma as well themselves.

So I guess my kind of message would be that bit of, you know, it is okay if you're not okay, and it is okay to seek help and support.

And if you feel like you're getting home and you feel like I need a little bit of space to talk about that, that is okay to do.

And I think just knowing that there are so many other partners who are in that same position with you.

So maybe being able to connect with other people, other families, other people who have been through that so that you're able to go, hey, it's not just me who's feeling this, is so, so important.

Yeah, absolutely.

And what, both for both mums and partners, what kind of like emotional support is there through, through while they're kind of living it, but also in the kind of, once they're kind of back home and hopefully out the other side of it, what kind of support do you offer?

What kind of support is available to people that feel they need it?

So whilst on the unit, like Bliss recommends that there is therapy support whilst they're on the unit.

I did a poll of my community about the amount of people who actually accessed that support or had available support there.

And 70% of people said that they didn't have any support on the unit while they were there.

So it's quite a few units that just don't have that support available.

When you get home, it's either looking into kind of NHS routes and options, so going through your GP.

And it might be that they refer you to a service called IAPT, which is a kind of talking therapy that focuses on cognitive behavioral therapy.

You should be prioritized as a mum within your first year to be able to be seen through them.

Or there are perinatal mental health teams, so it might be that that's the kind of level up care if you need that.

So maybe if you've experienced things like PTSD, birth trauma, for example, that it might be that you're seen within those services.

Again, it really depends on your area, what's available, what kind of level of care is around, but in terms of specialized support for NICU parents and people being trained in NICU and understanding that it's really lacking.

And that is really why I, a huge reason why I started the Miracle Moon stuff up, because talking to some of these feelings that you don't know whether are normal, so things like resentment, jealousy, guilt, grief, loss, intrusive thoughts, like all of these kinds of things that kind of layer of what you feel maybe when you get home or just some of those feelings around things like the process of coming home, around when your child first gets sick or repeated hospital admissions or the first birthday, going back to work, nursery, all those things can trigger different feelings.

And there's commonalities in that between mums and dads and what they experience.

So it's important to kind of talk about it, and that's why we kind of do what we do on Miracle Moon.

I then kind of see people for individual therapy, and we're starting up some different courses and trying to cover a lot of those different topics that I just spoke about, so that we can kind of get the word out and so that it's accessible for people as well, because that's the main thing for me.

If we were told about all of this previously, it would stop so much of the kind of hurt and pain with it.

So that's, I guess, what I feel like my mission is with it.

Yeah, it's amazing.

And I'm so glad, and I'm going to shout about you to everybody, because I think it's just really, really valuable.

I mean, it's still absolutely ridiculous and heartbreaking that it takes somebody off their own backs to set it up and it's not available within the NHS, but at least it is, it is, it does exist.

And hopefully more people will kind of be able to access it.

Another final question that came up through our kind of community at Birth-Ed was just from basically people who have had friends with babies in NICU.

As a kind of quick final question, how could you support somebody who has a baby in NICU either kind of practically, emotionally?

So I guess it's really hard, isn't it, as a friend to know what to do, how to act, what to say, all those kinds of things.

But I think it is okay to say, hey, I don't know what to say.

I'm not sure how to kind of manage this, but know that I'm here.

So kind of checking in with them with texts is absolutely fine.

Say I'm not expecting a text back.

I know that you're going to be busy or whatever it is, but know that I'm here.

I'm here if you want to talk.

And continuing to do that, I guess, when they get home as well.

That's really important.

Knowing that it doesn't just stop with the Nicky stay.

Knowing that it does have an impact for a lot of people when they get home and that they will still be kind of experiencing things.

They're not going to be over that experience kind of quickly.

It might be that they still feel like they need things to talk about.

I guess just kind of checking in, trying not to, if possible, minimizing that experience.

So things like at least, or kind of trying to kind of layer an element of positivity with it.

I've had people say to me, they just couldn't wait to meet you.

And they're trying to make me feel better or make the situation feel lighter or whatever it is.

But actually that can really invalidate the way that you're feeling.

So it's tricky and being able to sit with that level of discomfort, because it is uncomfortable talking about kind of NICU and talking about everything that kind of comes with that is really hard.

If you need to protect your space and you find it really difficult, that's okay to say that too.

I think it's also really important to know that things might be triggering.

So things like getting pregnant or pregnancy announcements or baby showers.

And it might be that your friend needs a little bit of time before they're able to kind of do those things again, because it might bring up huge amounts of kind of grief or guilt or even kind of PTSD type symptoms around those as well.

But also thinking about the practical support.

So for me, my family and my friends are really incredible because they just made sure that my freezer was full of food.

So that when I got home after the kind of day of being in NICU, I just had a meal that I was able to eat.

I had food that I was able to just take in.

One of my family members took my dog, so I wasn't having to think about my dog.

You can do things like supporting the other sibling if they're at home, doing washing.

Just those practical supports were huge in then being able to allow you as much space as you need to be able to look after your baby in the hospital and yourself.

Yeah.

Amazing.

Thank you so much.

I mean, we have literally, like we were saying at the beginning of this, when we were chatting before we recorded, each one of these questions could literally have been an entire podcast.

So we have basically skimmed the surface of what somebody might experience from Nikki, but hopefully even that is probably more information than most people have to begin with.

And if you are interested in kind of learning more, understanding more, then you can go and find Frankie at Miracle Moon, and I will post all of her links and things in the show notes of this.

Frankie, the last question I ask everybody before we kind of wrap up is, I normally ask if you could gift a pregnant parent or a new parent one thing, what would it be?

But I think this time we can specifically go, and if you could gift a niku parent one thing, what would it be?

I think it would be that they are not alone.

It is such an isolating experience because people don't talk about it.

I think I would say to people, you're not alone in the way that you're thinking, in the way that you're feeling.

There are so many other people out there who have experienced it, who are also thinking and feeling the same way that you do.

You know, society's kind of representation of birth and having a baby might not fit for you, so you might kind of feel like a bit of an outcast.

But there are people who have been through it too and who also want that kind of connection as well.

So you're not alone in it.

Thank you so much.

And thank you for sharing all of that kind of really valuable information with me today.

I think it will be a very helpful kind of addition to people's kind of birth preparation, actually accessing this conversation before, as we said, potentially one in seven people may need to kind of access Neekly Care.

So thank you so much for joining me.

If people want to follow you or find out more, where should they look?

So I'm on Instagram at Miracle Moon UK.

We've got our website, which is miraclemoon.co.uk.

We've also got a closed Facebook group, and probably the easiest way to access that is through our Instagram.

We've got a link tree, which gives you direct access to that.

So we've got a number of different kind of communities.

And on the website, we're setting up some courses so that they will start at the end of September as well, so that there will be a number of different resources and support on there.

We've also got a podcast, which we haven't recorded for a long time, which you can find on It's Miracle Moon on all of your kind of podcast channels as well.

Amazing.

Thank you so much.

Thank you.

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