NICU Awareness: The Unique Challenges and Support Needed for NICU Babies and Parents
Episode 32: NICU Awareness: The Unique Challenges and Support Needed for NICU Babies and Parents with Dr. Frankie Harrison @miraclemoonuk & Abby Boursiquot @ourvillageslp
This week, we have our first TWO guest episode! Rachael has TWO amazing guests on to discuss all about the NICU. They offer unique perspectives from both professional and personal experiences.
First, Rachael starts with Dr. Frankie Harrison. Dr.Frankie, a clinical psychologist and mom who had a premature baby, discusses the challenges and emotions associated with the NICU journey. She emphasizes the importance of raising awareness for the NICU and providing support for parents who have been through neonatal care. Dr. Frankie also highlights the high rates of mood disorders and PTSD among parents who have experienced the NICU and the lack of support available. She provides tips for self-care and coping with the challenges of taking a baby home from the NICU. Additionally, she discusses the common issues with sleep and feeding that NICU babies may face and emphasizes the importance of focusing on the parent-baby connection.
Her second guest, Abby Boursiquot, an SLP/CLC/feeding specialist, shares her personal experience and professional expertise on breastfeeding and feeding challenges in the NICU. She discusses how parents can encourage breastfeeding while in the NICU, including the importance of skin-to-skin contact and practicing latching. Abby also addresses the challenges parents may face when taking their baby home from the NICU, such as triple feeding and adjusting to a new feeding routine. She emphasizes the need for parents to prioritize their mental health during this time and seek therapy if needed. Abby offers insights on how friends and family can support NICU parents and highlights the importance of self-care. Lastly, she discusses the unique experience of time in the NICU and the uncertainty parents may face.
Dr Frankie Harrison is a clinical Psychologist based in the UK, and also a Mum who had a premature baby at 31 weeks. Her baby needed neonatal support when they were born and she struggled with the impact this had on her once home. She looked around, asked her doctor and found that there was limited support available for NICU parents. So she set up @miraclemoonuk on instagram and facebook, a supportive community for parents who have been through neonatal care and birth trauma.
Abby is an SLP/CLC/feeding specialist and has worked in special care nurseries and NICU settings in Chicago and DC areas. She is now an infant feeding specialist, specifically for medically complex infants, managing the issues that can occur with prematurity and breast/bottle feeding efficiency issues including tongue ties. Personally, her 2.5 year old son was born at 35 weeks and was in the NICU for 3 weeks. She felt it was such a transformative experience especially as a first time mom, but also seeing the NICU from a personal lens after working there before. This experience further informed her perspective on the NICU and how we can improve the experience for postpartum parents.
Mentioned in this episode:
Dr. Frankie’s website
Dr. Frankie’s Instagram @miraclemoonuk
Abby’s Instagram @ourvillageslp
Abby’s website
Rachael is a mom of 3, founder of Hey, Sleepy Baby, and the host of this podcast.
Listen to the full episode
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Welcome to No One Told Us, the podcast that tells the truth about parenting and all of the stuff that you wish you knew before having kids. I'm your host, Rachel Shepard-Ohta, and today is a really special episode. We're going to be talking all about the NICU, which is a very sensitive topic, but so important to talk about and to kind of reach out and help people feel less alone. I know it can be really scary.
So first up today, we're speaking with Dr. Frankie Harrison, who's a clinical psychologist based in the UK and also a mom who had a premature baby, 31 -weeker. Dr. Frankie set up the Instagram platform Miracle Moon UK on Instagram and Facebook, which is a supportive community for parents who have been through neonatal care and birth trauma. She provides free psychological information for these platforms to encourage parents to connect with each other and to reflect on their experience, to help normalize and validate the emotions that can go with the next. journey. Dr. Frankie also works to raise awareness for the NICU as it is so often not spoken about and provides online one -to -one therapy, couples support and runs her own podcast and workshops, plus lots of other resources. Dr. Frankie, you do so much for this community. Thank you so much for being here.
Thank you for having me. I really appreciate it. Like you said, it just, it doesn't really get spoken about so much. I always kind of do a little leap with excitement whenever anyone asks to talk about it.
Yeah, it's so wonderful. And I think one of the big misconceptions is that the NICU is only for babies who are really premature when the reality is that a full term baby could need the NICU or it's something that you have to be in for weeks and weeks on end. And it's always this super, super traumatic, horrible experience. So yeah, I'm excited to dive into today's episode. But what I'd love to hear first is just kind of your story and how you came to this work and your experience with your own child.
Yeah, absolutely. So my first pregnancy was a bit of an up and down pregnancy, all over the place. It was obviously my first experience of being pregnant. So I didn't really know what to expect. But it kind of, of ended sooner than I thought it was going to. So around the beginning of the third trimester, I started to have symptoms of preeclampsia, which I didn't know was preeclampsia. So I had the kind of high blood pressure and swelling.
I spent a week in the hospital trying to reduce my blood pressure. And at no point, I was kind of told about preeclampsia or about prematurity or about NICU. It then got to a couple of weeks later, and I had another readmission. And they were like, okay, we need to get this baby out now. And I was like, what? Now, like, I'm 30, 31 weeks, like, I just didn't really know anyone that had been through it. I didn't really know what having a baby at 31 weeks would look like. I didn't know about survival rates. I didn't know anything. So it then kind of felt like it all got kind of thrust onto me. And it was just completely, yeah, just a complete roller coaster that experience of quickly needing an emergency c-section, your baby kind of been taken into the neonatal care and then having everything that goes with being in neonatal care and trying to figure that out and becoming a parent all at once.
And I guess I came out of that starting to look for support, starting to look for other people talking about it. And it was at this point that it was then the beginning of the pandemic. So I was looking online a lot. And I couldn't really find anyone that was doing that. So me and another person called Georgie, we met online and we started talking about it. And we just set up Miracle Moon as a space for parents to talk about some of the things they might be feeling after neonatal care.
That's amazing. So how long did he end up having to stay in the NICU?
So we had five weeks in there altogether. So he came home and he was about 36 weeks. So he was still an absolute dot. He was like four and a half pounds.
Oh my gosh.
Yeah. What do you feel like was the most difficult part of that journey aside from just the obvious of the worry of wanting your baby to be okay and to be healthy? What would you say was like the hardest part of that stay – that five weeks?
I think just not knowing what was going to be coming next. You know, there's a there's an element of being in the NICU that feels predictable and there's routines and, you know, the same doctors and the same nurses and stuff like that and that does help you feel contained. But how your baby actually is is quite often that bit of, you know, one step forward and two steps back and you're not really sure what you're going to be walking in on day to day. You're just kind of on the edge of your seat the whole time, like waiting for a phone call or, you know, what is going to be happening because you aren’t. with your baby all the time. So you are, you know, you're kind of waiting and just waiting for that kind of worst case. I think that was probably the hardest kind of part for me really.
Yeah. I mean, on top of like you said, on top of also healing yourself and coming to terms with the fact that this just happened to you and processing all of that. I mean, for a parent who has that picture perfect birth, it's even a lot to just become a mom for the first time overnight. So I can't even imagine. And I wonder how it feels to then be discharged when you're used to your baby getting constant care and constant supervision and they're being monitored all the time. It must be really kind of scary to take them home. What do you feel like both from your own personal experience and working with other parents, what do you think is the most triggering or the most scary thing about taking baby home then?
I think it is that bit of you are so used to the monitors, the reassurance and being able to go, okay, if something happens here, I have got a medical professional like right here. And then you go home and it's all on you. And, you know, quite often your baby is all obviously stable enough to be at home, but that doesn't mean that there aren't things that that can continue to kind of go wrong. And I think that, especially for me, it was just that bit of then just being hyper vigilant of things that could go wrong. We had issues with reflux and, you know, lack of sleep and all of that kind of stuff and multiple admissions into the hospital again. And it was just that, like, again, just waiting for something to go wrong, which sometimes it did. Um, and so it was like, I can't rely on the monitors here. I can't rely on the medical professionals here. This is on me and I know that a lot of people talk about the fact that like they're like, I don't feel like I've got that Like parent instinct that people talk about and I remember a doctor saying to me Like what's your gut telling you and I remember at that time being like, I don't know. I was like, I don't know. I just feel so anxious. I don't know what my gut is telling me because my gut is anxious. So I think being able to kind of trust yourself and kind of learn to do things your way is really hard.
Yeah, I can imagine. So as a psychologist then, what can you tell us about things like mood disorders and postpartum depression and postpartum anxiety and birth trauma or PTSD? Are those things much more prevalent in parents that have gone through this?
Yeah, a lot more. So the rate of kind of perinatal mood disorders is up to like 80 % of people… parents who have been through neonatal care. PTSD is like 40 to 70%. So it's high. And I think the thing that is scary both in the UK and the US pretty much everywhere is that there just isn't the support there for parents. It's recognised, it's in the research that parents are experiencing a much higher rate of mood disorders. But in terms of the support that's then available for people, it's just not there. And again, that's why I wanted to talk about it so much. Because I think you can go into parenthood after NICU and kind of think, especially if you're too first, like, is this just normal? Is this what parenthood is like? Like this hypervigilance all the time? Or even being pulled back to the NICU experience? Or, you know, the kind of changes in mood and the snappiness and the irritability and all of those kind of things, those wonderful things that kind of come with it. But it's knowing that those things can change with support too.And that that is often due to the trauma and the stress of the NICU experience or birth trauma.
Yeah, I mean, it makes total sense. And you kind of touched on a couple of things. But just for any parent listening that says, oh, this sounds like maybe it's something that I'm dealing with, what would you say are kind of like the top signs or the top warning signs for someone who is struggling maybe with birth trauma or PTSD or even, you know, just postpartum depression or anxiety.
I think that there are things that you need to look out for, but it's really difficult because a lot of it kind of intertwines with just being a parent as well. So when you do all of the mood disorder questionnaires, it's like, is there been a change in your sleep? And you're like, well, yeah, I have a, you know, a baby that is waking me up or a change in appetite. And you're like, yeah, I'm trying to breastfeed. So there's been a change in appetite, but it's a kind of looking out for the things that just feel slightly more. So if your baby is sleeping and you can't get back to sleep, if you're finding that what's keeping you up in the night is like intrusive thoughts or being pulled back to NICU or worry or that kind of hypervigilance. And it's about how long it lasts.
So the kind of persistency of those things. So if you're getting intrusive thoughts and it's feeling overwhelming and it's having an impact on your ability to kind of cope. If you find that you are avoiding things that you would normally want to do. So like seeing people or things that you would usually enjoy, getting more irritable and snappy, having those intrusive thoughts, food, sleep, all of those kinds of things. And it's just if it's having a bit more of an impact on you. And usually it's quite hard to see yourself. So talking to someone that knows you and that can have that conversation with you in a kind way is important.
Yeah, it's super important. And I think it's also important for partners to know the signs, to be able to know what signs to look for. But also, I think people don't realize the non -birthing partner or the dad or whoever the partner is can also have a mood disorder postpartum and that's not something that's talked about very much at all. So yeah, just kind of both partners knowing those signs and looking out for each other and knowing how to approach each other in a kind way I think is so important.
Yeah.
What are some things that parents who are either maybe they already know that they're going to have to have their baby in the NICU for a while or they're in there now and they're listening? What are some things that they can do to kind of help their mental health while they're going through this
journey?
I think one of the first things that kind of goes when you become a parent in neonatal care is that looking after yourself a bit. Because you are very much just like, "I just need to be on the unit as much as possible and with my baby." So that means that you personally would maybe miss things like warred round for yourself if you're still on the maternity unit. So thinking about your physical health, pain medication, recovering from birth, personally, things like having access to food. When you're on a neonatal unit, it's not about looking after the parents. So they don't bring around food. So I remember things like, you know, missing mealtimes and then just like living off of a packet of biscuits because that's all I could get access to in like the hospital shop and stuff. Really basic stuff. Make sure you're taking your pain medication. Make sure that you're able to have access to food, to drinks, you know, those kind of things and not completely just forgetting yourself in this. And it's, you know, the stuff around looking after yourself. I hate to say like the word self care because it's got so many connotations around it, but it is just a... looking after yourself is because you deserve to be looked after but so that you can also do you know the looking after of your baby and I guess it's thinking about like how can you look after yourself both while you're cot side in the NICU so stuff that you can do that feels like soothing and relaxing as much as you possibly can do or stuff that allows you to be off the NICU unit if that feels okay to do so.
So like just taking a little walk, go and get some proper food, and then relying on other people within your support network to look after and help as much as possible with like meals or helping with stuff at home too.
So if you're listening and you know someone who is currently staying in the NICU with their baby, bring them some food. Bring them a meal.
Actually, let's take a quick break. And when we come back, I wanna hear about some of the challenges that have to do with a baby when you bring a baby home from the NICU. One second, we'll be right back.
Okay, we're back with Dr. Frankie and you talked a little bit about what parents might expect in themselves, both during the NICU stay and right when they get home. What are some common things that we see in babies who have stayed in the NICU? and now they're home? Yay. What are some things that are going on? Because I know just through my work with parents, I know that sleep and feeding can both be really, really difficult with these babies. So is that something that you experience? And are there any tips and tricks from your network of NICU parents that might give some help to parents out there?
I think it can be really tricky and obviously there is so much range because there may be babies that go into NICU and they have a couple of days there and they are okay and then they're discharged and they are like a healthy term baby. It might be that you're there for weeks and weeks and weeks with a very sick baby. There's a huge, huge, huge range of then what comes out of that as to whether the baby you're taking home is relatively healthy and okay or still quite poorly. So I guess that bit of though uncertainty again, of what that's going to be like for you because no one can predict that for you is really difficult. I think, yes, there are definite issues with feeding and there are definite issues with sleeping. Reflux is super common. After NICU, there's a whole load of stuff around kind of like gut health and, you know, babies who have had a lot of medication about things like how you feed your baby. So a lot of parents are encouraged to express and pump. And it's about transitioning on to breastfeeding, which can be really tricky if you don't have the support available to be able to kind of do that.
There are some really helpful blog posts and things like that. There's the Lelec League who got really helpful information and getting in contact with a lactation consultant if you can do, if you've got that support through your hospital is really important. But then looking at things like, you know, reflux and the underlying causes of the reflux of what's actually going on for your baby, again, is really, really important rather than just thinking my baby's got reflux and let's just kind of go straight for the medication, which a lot of people do, a lot of doctors do, I guess.
And then, yeah, just the issues around sleep. So I think what you tend to get is either babies that come out of NICU and they're like, okay, I've got this kind of sleep thing down. I know that it's like, you know, I'm put down and I go to sleep on my own. And then you get babies that go the other way, like mine, who are like, oh no, being held is really, really lovely and I want this all the time. So I couldn't put him down for like a year. And I didn't want to either, you know. And so there's, yeah, there's that too.
But I think just, I think there's a lot of stuff out there that when you start googling around the impact of NICU on babies, it can feel scary and it can feel overwhelming because basically, all of the research talks about that there being an increased risk for everything after having your baby in NICU- you know, like cognitive mental health, everything. But I think that the really important thing to do is just to focus on you and your baby and the relationship that you've got with your baby and just taking them for who they are, what they're giving you and just kind of meeting them at their own pace and in their own way and just building that connection with them.
The uncertainty of course is there, but it's just heightened because you've been through. NICU and you're aware that there are these extra risk factors, but it's just that bit of just one step at a time as you're learning this new parenting aspect of your life.
Right. That's such great advice and yeah, I try to tell parents that all the time, just don't worry about outside stuff. Stop Googling, just meet your baby where they're at, look at the baby in front of you, observe them and your connection is the most important thing in the world. And like the biggest predictor of how they turn out is your connection with them. So focusing on that, I think it's a really, really great piece of advice.
Dr. Frankie, before we wrap up, I would love to hear this is something that I try to ask all of my guests that happen to be parents. What is something that no one told you before you became a mom that you wish you had known about parenthood?
I think just the whole range of feelings that it would bring up. Like, I don't think that that was spoken about in any kind of way. It was about things like the pram and having the right stuff. And that was where the focus of this, you know, it was. And that's when I was thinking of that's what I was planning, even as a psychologist. It was then that I got to this point where, you know, even though I'd been through something that was really difficult, but there were so many emotions and some that I wasn't really used to feeling so like jealousy or like anger and they would just felt super intense.
So I think I didn't know that some of those feelings could feel so intense. And it was about learning what to do with those feelings, because it was also it was about protecting myself within that and looking after me, but it was also about like teaching my child how to regulate as well. So the bit about learning regulation tools and learning how to do that for myself became extra important. And I don't think that I knew that before becoming a parent.
Yeah, I mean, some things you just, there's no one that can prepare you for it. And there's just no way to know before you become a parent for the first time. But yeah, I totally agree with that one that it's all the emotions almost all the time. Like you go through a roller coaster every single day.
Yeah. And it's all of them all at once, right? It's, you know, opposite ones all at the same time.
For sure. Oh my gosh, for sure. I've got multiple kids. So sometimes I'm feeling like so angry at one. And then the other one does something so cute. I'm like, I don't know how to feel right now. Where can people find all of your amazing resources? Because I know you've got a community membership that's going to be coming out and you have so many wonderful things that you do. So can you tell us just a little snippet of where people can find all of your great stuff?
The majority of, you know, we're on Instagram, so the most active place. So we're at Miracle Moon UK and then we've got a website www .miraclemoon .co .uk. and that's where you can find all of our staff. So we've got a whole bunch of free resources for building this community, and that will be coming really soon. So they are the main places, we're on Facebook, we've got podcasts, all sorts, but they are our main places.
Okay, perfect. I'll be sure to link all of that stuff in the show notes too. Thank you so much, Dr. Frankie. I think that this is going to be really helpful for parents who are navigating this or who are kind of past it, but still processing and coming to terms with it all. So I really, really appreciate everything you're doing for parents. Thank you so much.
Thank you.
Now we're speaking with Abigail.. Abby is a SLP CLC and feeding specialist and has worked in special care nurseries and NICUs in Chicago and DC areas and is now an infant feeding specialist specifically for hermetically complex infants managing the issues. that can occur with prematurity and breast or bottle feeding efficiency issues, including tongue ties, which I am all too familiar with that issue. And then personally, Abby has a two and a half year old son who was born at 35 weeks and was in the NICU for three weeks.
She felt that this was such a transformative experience, especially as a first time mom, but also seeing the NICU from a personal lens after working in there before. So this experience-- further informed her perspective on the NICU and how we can improve the experience for postpartum parents. So Abby, welcome to the podcast. Thanks so much for agreeing to do this with me.
Oh, thank you so much. I'm so excited to finally talk to my longtime Taylor Swift bestie in real life. I know, I know. It's always so fun when I get to have like real conversations with people that, you know, have either followed me or that we've chatted in DMs before or and I know you're good friends with our team member Nedda. So yeah, it's like full circle and I'm really excited and I would love to start this conversation with just kind of hearing about your own experience because you know, I would love to talk to you about the professional side of the NICU and the things that you see as well. But I think your personal experience probably informed so much of the work that you do now. So can you speak a little bit to what happened with your son with the birth and with that initial experience?
Yes. So yeah, definitely totally changed my perspective once I was on the other side of things. But my son, I was having a totally normal pregnancy, my first one. And at 34 weeks, they found low fluid. So the doctor, I was seeing midwives, but there was an OB at the practice and they said, you know what, I think it's safer. Um, they gave it like a week, but they were like, it's just going to be safer to induce you at this point. Um, even though they knew we're going to have to deal with maturity and probably a N ICU you say. Um, but honestly, at that moment, I wasn't even like thinking about it. Even being in the working in the neck here in the past, I was like, Oh, 35 weeks, he's going to be just fine. Like maybe we'll even get to go home.
And I was just like in denial. Like clinical brain was like gone. And after the whole birth, it was a long induction. We did get to avoid a C -section was which was awesome. But he was taken to the NICU right away. I think, honestly, just because of his age, he had a little trouble breathing and had some oxygen for the first four hours. But he was relatively healthy. And I'm so blessed because I know, you know, so many NICU experiences can look so different depending on like, there are medical things going on, what age they are when they're born. So I'm definitely speaking from the perspective of a feeder grower 35 weaker that was pretty healthy. Our main issue was really like jaundice and feeding and like low blood sugar.
So he was in the NICU for 3 weeks, NICU for the first weeks. He had a feeding tube and he just couldn't, couldn't get it together to breastfeed or bottle feed really efficiently. And honestly, like he shouldn't have been able to at that age. Um, so we can get more into that later in the episode, but, um, you know, at 35 weeks, they're just really, they can look like they could feed and take a bottle, but they fall asleep right away and they just don't have the stamina because if you think about it, they were supposed to be just passively being fed by an umbilical cord for five more weeks. So even just breathing air is hard work for them. So then adding on swallowing is difficult. So I just tried to really keep that perspective, but it was hard to not be like, "Oh, I just want to go home and take your baby home."
But yeah, we got to go home at 38 weeks, like almost exactly. And... And so it felt like a really long time, but it relatively was only three weeks. And then the journey kind of continued at home with a lot of feeding trouble for the first three months, we were triple feeding for way too long. So I can talk about that too. And I just had like, I want, I feel like I had like every issue in the book, like mastitis like different for land. pumping issues. He ended up having a tongue tie that was kind of diagnosed pretty late in the whole journey. I think because he was premature, providers kept saying, like, oh, he's going to get it When he gets a little older. I was like, it's still not working. So and it was my first time, even knowing what I knew as an IBCLC before, nothing can prepare you for some of the physical challenges that when you're doing it yourself.
It's the emotion that comes with it being your own baby. Yeah, it's a totally different thing.
So I do like to say the end of the story is we did end up getting to breastfeed for 18 months Which I feel like was really Empowering and like amazing that we got there given all the challenges we had but I think a lot of it was yeah Really,..... I didn't think we were gonna get there and then just like the support. I just kept seeking out support like over and over again.
Good. I know. I mean, it's hard because you do have to kind of be proactive and you have to be the one actively seeking out the support. It doesn't just like fall in your lap, unfortunately. So a lot of these moms that don't have your career probably don't even know who to go to or what even to ask or what to look for. They don't know why it's a problem. And so a lot of these feeding journeys post -NICU, can be really, really difficult and traumatic.
Yes, definitely. And I know other things can be going on too for people like different milestones. And I definitely think, you know, I was so focused on feeding. So that'll be like a lot of my story.
Yeah, that's your wheel house.
Yeah. I wasn't having some of the other issues. Yeah, that was some of the other issues. Or I wasn't having some of the other issues that people can have. But think, yeah, if, I mean, it is a pretty popular one, even if babies are born at like 37, 38 weeks and don't go in the NICU but go home and they're still having trouble with breastfeeding, they, like, this could probably help just show people like different things you could try to look into.
Yeah, for sure. You talk about how most, the most evidence -based NICU are using infant -driven feeding protocols and approaches. What does that actually mean?
Yeah, that's a really good topic that I'm very passionate about. I really learned the most about this when I worked in Georgetown NICU, which is a level four NICU in Washington, D .C. And level four is kind of like the highest level of care. And my mentor there had started an infant -driven feeding program. And basically, the old way was like volume -driven. So like, oh, we gotta get this baby to take 30 MLs, right? Like we've got to just really look at the volumes that the baby's taking. And once they're taking enough by mouth, then we can take out the feeding tube and they'll be able to transition home and not need the NICU anymore. And this is kind of at the end, like 35 to 40 weeks gestation. Before that, they really can't be... eating by mouth yet.
What we have transitioned to is doing infant drip and feeding, which is just cue based, like watching their cues. So for example, like, I could get the baby to take that much because their sucking reflex will just have them keep taking the milk, even if they're kind of asleep. But that's not going to be a quality feed. And it's actually shown that, like, these babies will take big amounts. and then they'll kind of crash and like not even be able to wake up or participate for feeding and then it kind of gives you like this roller coaster ride whereas if we just go based on the infant's cues like are they alert are they looking like they want to participate for feeding like can they suck and and they're not like catch up breathing and looking like it's a really struggle for them physiologically…. if we can have it be a more quality experience for them, and maybe they only took 15 ML, but then the next day, maybe they'll take 20, and then the next day, maybe they'll take 20 again. And it's kind of a slower ride, but they actually see, we've seen that babies get out of the NICU faster and just have better feeding outcomes because they don't have like any oral motor kind of aversion or trauma.
Right. So are the cues then the same as a full term baby where you see like the lip smacking or the moving the head from the side to side or things like that or?
So they're similar, but there are some different preemie cues. Like I would say for preemies, you're looking a lot more for like their state regulations. So like whether they're totally asleep or like drowsy or like are they quiet alert where they're like kind of ready to participate or are they… fully alert crying, right? And then you're also looking for kind of stop queues, which could be their eyes blinking really big while they're taking a bottle, they're just like, whoa, or their nostrils will flare like, okay, I'm working harder to breathe.
Because when you suck swallow breathe, like you'll hear that sucks swallow breathe terminology. And that just kind of refers to the fact that to swallow, you close off your airway and you don't breathe for a very quick second. But if you think about that for a baby, a premature baby, it's like running a race for them and they're just having to hold their breath every time they're sucking.
Right. Oh my gosh, yeah.
And so what a lot of babies need is to be on their side and any parent could do this, even if your NICU isn't like coaching you to do this, like turn the baby on the side, turn the bottle kind of horizontal and you can watch for their cues. And if they look overwhelmed, and their hands are slaying, like their little fingers are jetting out or their eyes, like I was saying, you could tip the bottle down, and then you kind of see them relax and breathe a little bit, and then suck again. So they just need more breaks and kind of more like tailored bottle feeding experiences, just because it's, it's harder work for them than a full -term baby.
Yeah that makes total sense.
And then the fatigue cues are like if they're just starting to fall down. Right, we're gonna take a quick break and then when we come back I really would love to hear about how parents can encourage breastfeeding while in the NICU. We'll be right back.
So Abby, you mentioned how parents can encourage bottle feeding and using that infant driven feeding protocol is so important. You mentioned that breastfeeding was something that was really important. for you to be able to do and I know lots of other parents feel the same way. So what are some things they can do while they're staying in the NICU to kind of encourage the baby to breastfeed?
That's such a great question. First of all, I jumped right to bottle feeding because that's kind of the norm in NICUs, but a lot of NICUs are breastfeeding friendly. And if you seek out any IBCLC, , so a lactation consultant that works in the NICU or an OT or SLP is usually the feeding therapist in the NICU, they could definitely help. But even if there's not, like in some, I was in a level two special care nursery so we didn't have any feeding therapists, but I just kind of knew to ask for skin to skin and it's something that you could ask for even if you're not planning on breastfeeding.
But it's so good for premature babies especially. So it's basically just laying the baby naked on your bare chest and it definitely helps your milk production. It just helps regulate the baby's temperature like there's so many benefits. But that's kind of a good natural way to start the breastfeeding process. And then any practice they do like nuzzling even if they're getting most of their feeding through the tube at this point Just being near your breast during feeding helps them associate like oh, okay, like I'm getting fed. I feel full and I'm near boob and then they can Practice latching …. at first your nipple is just so big for their little mouth. But you can try to practice, a lot of people will offer nipple shields Which can be helpful for premature babies just to give them more input in their mouth.
Of course, we always say nipple shields can be hard to ween off. And I definitely had that experience. But I think it was like a means to an end and got me through a tough time. It allowed him to actually practice and me to practice with less pain. And that was good. And don't feel like you have to practice every feeding, like maybe one feed, you're just doing a bottle because you're just like, I want to preserve the baby's stamina and they only are going to be awake for 10 minutes. So we're going to do the bottle and then the tube.
And then maybe, um, maybe you do one feed where they're doing the whole tube, but you're just practicing latching during that. But anything they get through the breast is just kind of icing on the cake. And obviously go with what your providers are saying, but I don't think you should be afraid to advocate for these things and just say like, I really do care about breastfeeding and I want to practice as much as we can. And different NICUs will have kind of different policies and even different nurses. Like if one nurse tells you, Oh, no, like, I don't think we should do that today. Ask again tomorrow, you know?
Yeah. Yeah.
And, and then, and then just always keep in mind, like, someone told me in the NICU, I think it was the IBCLC actually, and she was like, you're going to protect your milk supply. He's going to get fed by the NG tube and develop and get to 40 weeks. And then at some point when you're home, you'll be able to breastfeed. But like, and we're still going to practice in the meantime, but like, don't think that like just because you're not doing it now doesn't mean you can, that you're not going to be able to in the future when they're older.
Right. Yeah, that's probably a really helpful reframe for people who are feeling super anxious about it because there's so many other things to think about when you're in the NICU too. So taking a little bit of that pressure off is helpful. And I'd love to actually talk about going home, which is like probably the most exciting day for any NICU parent, right? And maybe a little bit scary. What can you tell us about what challenges parents might face regarding feeding or whatever else when they are finally able to take their baby home?
That's a good question. I think you're so excited to get home and when you're in the NICU, you kind of, at least, I felt like this, like, trapped feeling of, like, I just, once we get home, everything's going to be better. And I think it's good, it is better because you're in your own environment and you feel like a sense of peace that you're like no longer separated from your baby for any amounts really that you have to be. But I think you should remember that like just because you're discharged home doesn't mean your baby is going to act like a full term baby that maybe if this is your second child, like that they're just gonna jump right in to what you expect from a full term baby.
So what that means is like, they still might be sleepy, especially if they're like 38 weeks or 39 weeks, they're still sleepy. You still might be having to like wake them up to feed or feedings might be taking extra long, with whether it's breast or a bottle, could be taking like 30, 45 minutes and I was triple feeding. So that was… that's when basically you're, you're trying, the baby's not transferring enough from the breast. So you're trying to give them what they need to grow through the bottle, because now you don't have the tube option anymore. So they have to, they have to take the milk through the bottle. But then you still want to practice breastfeeding. But then if you're giving milk through the bottle, you have to tell your body like, Oh no, like keep making the milk. So you have to pump. So that's where they get the term triple feeding because it's like breast bottle pump every single time. And that's really just like a recipe for a burnout disaster.
I think sometimes we have to do it short term and a lot of lactation consultants recommend it. But if you haven't done it, I just think, Oh, no, one can imagine how difficult that is. There are alternatives that you can do if you work with a professional like, like you could, you could pick one feed of the day, and especially at night time, where you're like, "You know what? I'm not going to practice breastfeeding. No one's learning anything at night. We're just going to do a bottle and pump. My husband's going to do the bottle. I'm going to pump and everyone goes back to sleep," and that's really smart. There's a lot of things you can do mentally to try to just get through this time and be patient with the process.
Then, eventually, one day, you're going to be able to get through this. home for a couple weeks and the baby's gaining weight better, it can be really hard to get out of the mindset of like this structured like every three hour feeding and like waking them up. Like I remember I would never want to let him sleep too long. Like even once he was gaining weight, I was so nervous because you get so worried and fixated on their weight gain being in the NICU. And it's also hard to like transition to being on demand with breastfeeding because you've always seen exactly how much they took in the bottle. So I think eventually, once they're doing better, you can take this leap and get out of that place. But that took a lot of weighted feeds and trying to work with professionals to feel confident enough that he wasn't going to lose weight again.
Yeah, and you mentioned your... your kind of like mentality around things too. And I think that's such a huge piece for parents that are going through this. What would you tell parents who either have gone through a NICU stay or maybe currently in the NICU or are just kind of like trying to process their experience? What are some things that parents could do to kind of just care for themselves during this time and look out for their mental health?
Yeah, that's I'm so glad you brought that up because that's one of the things I wanted to say is that like any amount of time in the NICU, like just separating from your baby at such a vulnerable time in your life, especially your first baby becoming a mom, I think you're just so vulnerable and and it just it sets you up for more postpartum depression and definitely post -partum anxiety.
If you can start therapy, like as soon as you can I didn't even it just felt like one more thing so I didn't start it til like six weeks but it helped so much once. I it just gave it obviously gives you a place to practice to process and and things that you kind of go into fight or flight mode. I think when you're in the NICU or at least I did. and I feel like you're like this mama bear like protect like just like fighter for your baby and like you have to remember like you're the patient too and like I think that's why I got mastitis…. like I was so stressed and then being on that rigid schedule and feeling like you couldn't even take like a four hour nap because that would mess up your pumping schedule like…. so you have to
and I remember like the best time two really great times where I had like the best breastfeeding during all those three months of challenges was one time when I went home and my mother in law had made like this amazing soup and I took a bath and ate this soup and then I had this great breastfeeding and then one day I went to
Yeah, you were relaxed.
Yes. Yes. And then I went to get a massage one time and then there was a lactation consultant that happened to be there. I ended up being my mentor, but she helped me latch and she was like, "You can do this. And I just think that so much of it is your mindset and your mental health. And like believing it when people say like You may not be breastfeeding now, but you're going to like you and then this is breastfeeding Right like the pumping in the like you're working through it and you're learning and so is your baby. And then you also on top of that have kind of a disservice that you had to start it earlier than they were ready…. so I just think keeping that mindset that like if this does matter to you like just just be persistent. But also, like, if you don't take care of yourself, then that's, then it's not worth it. You have to be taking care of yourself.
Yeah. For sure. And it sounds like you had some nice, like, support during that time, too, which I think, you know, has to just make all the difference in the world and is so, so important. What do you feel like were the most helpful things that people did for you guys during that period?
That's a good question. I mean, of course, when you're in the NICU, especially during these COVID times, like people weren't allowed to visit, but they could send us food. So that was really helpful, like uber eats or whatever, practically, because you just don't have time to think about anything because it's just like, okay, let me pump, then let me go see the baby, then let me like maybe take a shower or something, sleep. So anything you can take off their plate in that way. I remember my mom went and got us donor milk because our NICU didn't have donor milk. And I mean, I could have supplemented with formula, but I was just like, oh, like he's a preemie. I don't want to add a GI complication. Like, can you get this donor milk from this very specific place?
And she like brought it in a freezer because my milk was taking a while to come in. And then what else? I mean, I just saw so many different lactation consultants. That was really helpful. And like, not being afraid to like, go to a new one if you feel like you're not clicking with one. I think a lot of it is like, being able to accept help also because you're kind of in this place of like, like, you just went through kind of a trauma probably and it was hard to not feel like, like you just... I don't know, it was hard to accept help.
But I think if you, if you can try to remember that you're the patient too, you need to rest, like delegate everything else, if you're the one that needs to be feeding, or sometimes maybe you can just pump and let someone else feed the baby. And then that can help preserve your rest. Yeah. And not being worried about visitors. I mean, it's so different when you have a preemie, like like they're sleepy and like, like a lot of my family had to wait to meet him a lot longer than they probably would have if he was full term. And that's okay. Like that part will all come.
Yeah. So helpful to remember. Thank you so much for sharing that. One thing that I would love to ask you before we wrap up would be, and it can be related to the NICU experience or just in general, because I know you're like in toddler land now.
Yes. Very different.
YES- big difference, what is something that no one told you before you became a mom? What is something that you would just wish you were a little more prepared for?
So I thought about this a lot and because I just love the title of your podcast and I think it relates to both, but no one tells you that really most parenting is like regulated to your own emotions, kind of letting go of what you think the experience should be, whether it's like a birth or a NICU stay or tantrums or transitioning to preschool or sleep, like whatever the issue is. You have to let go of what you are frustrated with and like how you think it should be going and like manage your own self to get yourself in a place where you can support your kid through whatever it is.
It's so funny. I love that. and I completely agree. And do you know what's hilarious is that I ask this question of almost everybody that comes from the podcast if they're a parent. And almost everyone, I need to like to do some data actually. Almost everyone says the exact same thing that you just said.
do they all say that?
Yes. Oh my god. I would say like, it's got to be like eight out of 10 at this point. I need to actually like run through all the episodes and listen to fact check that. But it feels like everybody,
I'm not original.
No, no, but it's just, it just speaks to the fact that like this is... It's true. It must be true. Yeah, this is, it's true. And it's like, this is what we need to be telling other people that like you can do whatever you want as far as like your parenting, you know, style or different things that you want to do with your kids. But it all comes back down to figuring out how to keep your own shit together is really what it is.
Yes. You know what’s funny too, the first thing I thought of was no one tells you that it changes your relationship with time. And like, and then I was like, okay, everyone tells you that like literally.
No, actually I haven't heard that one before, but that is so true too.
Okay, well you could use that one if you want, but basically it changes your relationship with time. And it like, I don't know, I just was not prepared for like how different, I mean on the day to day, but also on like, you know, then you just, every time you think of like five years on the road, you're like, okay, well, my kid will be six. And then, you know, like, you just, I don't know, it's so true
Yeah, no, it's a mind fuck for sure. And when you're in the NICU, I bet. So actually, tell me this, when you're in the NICU, does it feel like time is standing still? Or does it feel like you're there for years?
Okay. Like, well, I mean, like years, I mean, like standing still, I was in like, not moving slow, like not moving like very, very slow. Like, I think that's the biggest issue with it. And I would love to talk to people who were there for like three months. I mean, that's just so hard. But, um, but you just, I think that not knowing, and they'll never tell you when you're going to go home.
Like they'll say maybe around your, your due date, but like, oh, just the not knowing was so hard for my husband and I, and just like planning for like telling your family, like, you know, all our family lives out of state. So they had to like fly home and fly back and like-
Oh, that's a lot.
Yeah, it was so hard to plan and just mentally. Like if I, I feel like if someone had told me, like, it'll be three weeks. I mean, it still wouldn't be really hard, but I would be like, okay.
You can prepare yourself that way at least. Yeah, yeah. Oh my gosh, that's gotta be so tough. Especially just for like, when it's your first and I can imagine then if you have-- a subsequent baby like what if it's your second or your third and you don't know how to prepare your older kid for when you guys are coming home and that's gotta be so difficult.
I kept thinking that I was like you know what one silver lining is that this is my first baby you know if I had another kid at home you would feel like even more torn because I remember like the urge to be there is so weird…. like you I remember the nurses being like you can go take a nap we’ve got this and I was like How dare you tell me to like leave him like I can't leave him It was crazy, but you can't really convince someone out of that.
No, I mean talk about mom guilt like that's got to be the strongest mom guilt in the world.
No, I know yeah, and like when they're going through procedures like I still think about it I'm like I didn't get to be there when they put the NG tube in and I'm sure he was screaming and it was horrible Like his first day of life. Like, yeah, I feel like, oh, that is a hard part. And I processed that a lot in therapy afterwards. Like I felt like it was hard for me to leave him for like a long time. And maybe that would have been just my personality as a mom,
but like going back to work and like babysitters like was just always harder. And I wonder if that's 'cause I have a little trauma of leaving him.
I mean, I'm not a therapist, but... that would make sense.
Yeah.
I think that tracks.
I think so.
But like you said, like just to hammer home for everybody, therapy is amazing. Therapy is great. And if you can get your hands on some therapy, like please do, whether you're a NICU parent or not, therapy and parenthood is just so incredibly helpful. Abby, thank you so much. This is such a, I don't want to say fun conversation because this can be a very heavy topic, but it was fun to talk to you and I appreciate your point of view a lot because you know like we said you have the personal experience but also the clinical experience and the things that you said will put a lot of parents minds at ease so I really appreciate you being here.
Thank you, yes I love helping moms with this so anyone who is struggling with the transition home from all of that.
Yes, where can people get in touch with you?
So I have a website, abbybslp .com, or on Instagram. I'm @ourvillageslp. I'm in Atlanta right now, but I really, I still work with a lot of patients in Chicago and really just all over the US, so.
Awesome, okay, I'll put that stuff in the show notes so people can reach out to you and again, thank you, have a great rest of your day.
