Hello friends 👋
In this conversation, Leah and Parijat Deshpande explore the profound impact of high-risk pregnancies and NICU experiences on parents. Parijat shares her personal journey through a traumatic pregnancy and the lessons learned about intentional living, relationships, and the importance of grieving. They discuss the role of healthcare professionals in supporting NICU families and the need for radical acceptance and mindful presence during such challenging times. The conversation emphasizes the normalization of trauma and the ongoing nature of grief as parents navigate their new realities. In this conversation, Parijat shares her experiences and insights on navigating the emotional landscape of being a parent in the NICU. She emphasizes the importance of understanding and accepting feelings of anxiety and fear as normal reactions to abnormal situations. The discussion highlights the need for empowerment through knowledge, the significance of addressing basic needs during trauma recovery, and the healing potential of trauma informed somatic therapy. Ultimately, the conversation underscores the importance of finding hope amidst uncertainty and the shared journey of NICU families.
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Takeaways
Parijat Deshpande is dedicated to improving high-risk pregnancy outcomes.
The NICU experience profoundly changes parents' perspectives on life.
Intentional living becomes crucial after experiencing trauma.
Relationships can shift dramatically during the NICU journey.
Grieving is a necessary process for NICU parents.
Space for grief often comes after the NICU experience.
Grief can resurface as children grow and face new challenges.
Healthcare professionals play a vital role in supporting NICU families.
Mindful presence and listening are essential in NICU support.
Normalizing trauma helps parents process their experiences. Parental anxiety in the NICU is a normal reaction to an abnormal situation.
It's essential to validate feelings of fear and anxiety rather than pathologize them.
Empowerment comes from understanding and accepting one's experiences.
Basic needs like nutrition and hydration are crucial for recovery in the NICU.
Journaling can help reconnect individuals with their bodies and emotions.
Future fears about having another baby can be addressed through understanding past experiences.
Support systems are vital for navigating the NICU journey.
Sensory awareness is important in trauma recovery.
Healing is possible, and feelings of anxiety do not have to last forever.
Hope exists even in the darkest moments, and it's important to hold onto it.
To learn more about Parijat’s work go to www.ruvelle.com
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The transcript of today's episode can be found below 👇
Leah
Parijat Deshpande is the founder of Revelle, the only truly trauma-informed company specifically dedicated to improving high-risk pregnancy outcomes, reducing preterm birth, and supporting parents to pass on generational health. That is something so crucial for our NICU families. She's on a mission to end the high-risk pregnancy crisis. She has served and supported thousands of clients through her live events.
virtual courses, and one-on-one consulting. She also has a bestselling book, Pregnancy Brain, A Mind-Body Approach to Stress Management During a High-Risk Pregnancy, and The Body Language Journal, which helps folks through the pregnancy and healing processes using guided journaling support. You can learn more from our conversation today and at her company's website, www.revell.com.
which we will of course share all these things in our show notes. And she's here on Beyond the Beeps because Parijat is also a NICU parent. It was a little over a decade ago or so that Parijat came to the NICU. Welcome Parijat.
Parijat (PAH-ree-jaath)
Hi, Leah. It's wonderful to have this conversation with you. Thank you for inviting me here.
Leah
For sure, for sure. What brought you to the NICU originally?
Parijat (PAH-ree-jaath)
It was a very high-risk pregnancy. Developed multiple complications in my pregnancy. So there were a lot of factors that were just working against us, to be honest. And it was the delivery of my son at 24 weeks and five days that ended my pregnancy and started our lengthy NICU journey after that.
Leah
Mm-hmm.
Mm-hmm.
Wow, that's a very low birth weight or extreme birth weight, extreme prematurity baby. Wow. So you're probably in the NICU for quite a long time, had many, many ups and downs, I imagine. I think a lot of folks and our folks who are listening, our parents who are out there now say that the NICU changes them. And I'm wondering how it changed you.
Parijat (PAH-ree-jaath)
Mm-hmm. Mm-hmm. Yep.
Mm-hmm.
Yeah, there was, I still remember there was a moment after he had come home, it probably a few weeks after he had come home. And I remember just sitting on the floor because I was just, I was so disoriented. And I remember describing it to my husband, like, I feel like one of those, you know, war of the world movies type things where the whole, everything just gets decimated. And then you kind of...
Leah
Hmm.
Parijat (PAH-ree-jaath) (02:54)
You're one of the protagonists who's waking up from it and you're taking stock of like, what is this world that I'm now in because I don't recognize any of it. I mean, it changed me in so many ways, so many ways. mean, the way that I, our entrance to parenthood, he was our first living child. And so that was our introduction to parenting. We learned how to change diapers around wires and tubes.
Leah
Yeah.
Parijat (PAH-ree-jaath)
And so the way that I understood and approached parenting was different than I ever thought it would be. think just personally as a person, it changed me in that ignorance was gone, naivete was gone. We knew too much. I think we got so close to the end of life that...
Leah
Yeah. Yeah.
Parijat (PAH-ree-jaath) (03:48)
it helped us to have a new appreciation for life. And also we became, both my partner and I became very aware of how intentionally we want to live our life because it felt like we had been given a new lease on it.
Leah (04:07)
Wow, that's a powerful mindset shift that I hear. Tell me more about that intentionality.
Parijat (PAH-ree-jaath) (04:15)
I think we recognized how fickle and how fragile life can be and that we are nobody's immune. This can happen to anybody. And I think that was a very important lesson that I learned, I think, because prior to me even starting fertility treatments, I was teaching developmental psychology up at my alma mater. And I was teaching...
lessons about the developmental impacts of prematurity solely from a theoretical, you know, clinical perspective. And it really felt like this is something that happens to other people. I fully own that. was teaching it from a place of distance and a place of, this happens to some people and we understand, but it can't happen to me. It never even crossed my mind that it could happen to me.
Leah (05:04)
Yeah.
Parijat (PAH-ree-jaath) (05:14)
And then to become the parent of a child who was less than a pound and a half when they were born. And then to raise that child, to know what it was like that NICU and NICU graduation is just one of many milestones that we will be working towards and celebrating in our life. It really opened my eyes to, you can do everything right. You can be a good person. You can be the
you know, show up at your best. You can be healthy. You can make good choices. I mean, none of it matters. None of it matters because the risks exist for everybody. Now, of course, certainly there are added risks for some than for others. For me, for example, there were added risks of health issues and things like that. Sure. Fine. But I think it showed us just how possible it is for anybody to experience this. And if that's the case, then
Leah (06:04)
sure.
Parijat (PAH-ree-jaath) (06:12)
Who are we living life for? And is this the life that we can proudly say to our son when he's older, hey, these are the decisions we made and this is why we made them? Or can we take stock of our life and go, you know what, we just survived something massive?
Is this actually how we want to be living? And if not, why are we doing it and how do we change?
Leah (06:42)
Yeah, how do we change what becomes important, what becomes our driving force, our purpose? What did you start with? This is a very profound and grand thought, right? And it's more than just a mood board, what you're talking about. is a big deal. How did you start?
Parijat (PAH-ree-jaath) (06:50)
Yeah.
Yeah. Yeah.
I think it started with our relationships. I think a lot of NICU parents can relate that there are some relationships that don't survive the NICU. And then there are others that sort of cling on for a little while. And then they start dropping off or they start changing because especially when you have a baby born that early or if you've got baby with pretty intense medical complications or any kind of chronic situation.
Leah (07:14)
Mm.
Parijat (PAH-ree-jaath) (07:37)
there's no over date. And we learned pretty quickly that not everybody can tolerate that. And then we also learned that we want to be very intentional about the messages and the kind of love and support that our son grows up with and not have him be constantly trying to achieve.
Leah (07:39)
All
Parijat (PAH-ree-jaath) (08:02)
a milestone like, well, when you start to do this, when you can get there, then it'll be okay. Like, well, can we actually have a relationship where you accept him as he is regardless? Those are the people we want in our life, not people who are looking to see, okay, but when is he going to, right? How many times do we get those questions? When are they going to crawl? When are they going to walk? When are they going to do this? What if they don't? That needs to be okay.
Leah (08:16)
Mm.
Right.
Right.
Parijat (PAH-ree-jaath) (08:31)
in this relationship. And I think that's where we began. We felt, I think, intensely protective of him, but also of ourselves and each other. That we need to be around people who have this radical acceptance of not just what we survive, but who we are now and what this family is, given everything we've been through.
Leah (08:54)
Radical acceptance, it is a thing that I have had to make as a practice because it doesn't necessarily come naturally to me, right? I have to practice that a lot. And I just really value deeply what you're talking about of this, you know, we're always looking forward, right? Which we want to be, you know, positively looking forward, right? But asking that it's not going to be okay until X is really crucial in the NICU too because...
Parijat (PAH-ree-jaath) (09:14)
Sure, sure.
Leah (09:22)
like you're saying, then we're kind of always living on the edge. And we see that in our families, they're on the edge of the next thing, as if where they are now is not okay, right? And that is, it makes me think so much about what I do in my daily basis, in my daily work, and our mentors do, of really trying to help folks be where they are right now and make these memories. I know there's a lot of families who don't,
Parijat (PAH-ree-jaath) (09:25)
Mm-hmm.
Yeah.
Leah (09:51)
or afraid to take pictures of their baby in the NICU. They're afraid to tell anybody their story. And I hear you, if you're listening to us now, I hear you and I hold you tight. And that's something that we really want to help folks is to be more comfortable with what is. What things did you find that helped you? know you mentioned prioritizing those relationships with the people who are going to...
Parijat (PAH-ree-jaath) (09:53)
Mm-hmm. Yep.
Mm-hmm.
Leah (10:19)
be there for you, be the wind at your back. Was there something else that occurred for you or that helped you to feel that way that another family could benefit from?
Parijat (PAH-ree-jaath) (10:30)
I had to fully grieve, fully, fully, fully. There were so many losses along the way, both, you know, like I said, he was our first living child. So we'd had a loss prior, a pregnancy loss prior to him, his birth, but then the experience of going through fertility treatments, of going through a very high risk pregnancy with many pregnancy complications.
Leah (10:34)
Hmm.
Wow. Yeah.
Parijat (PAH-ree-jaath) (10:57)
And the way I wanted to experience a pregnancy never happened. The loss of not being able to carry even to the third trimester, right? Or even in my mind, our eye was at the very end, our eye was at 25 weeks and I couldn't even make it there. And that was a big loss for me. And then the loss of how we became parents and what we learned and the loss of ignorance. I mean, there's so many. I could not fully accept.
Leah (11:07)
Right.
Parijat (PAH-ree-jaath) (11:27)
our reality until I did that. And the way that showed up is I kept blaming myself. I held myself hostage for a very long time because it was easier to be angry at myself than it was to fully acknowledge how many things we lost in order to have this life.
Leah (11:38)
Hmm.
that grief is heavy. I'm just hearing you say it out loud, gives me so much hope for others, because I know hearing this lets us know that, we can do this.
Do you feel that you had the room to grieve when you were in the NICU? Or did you have to force that? Did you have to make that space? Because grief takes up space in our hearts and our minds and our even physical space, you know, to feel fully.
Parijat (PAH-ree-jaath) (12:27)
Mm-hmm.
Leah (12:30)
Where did you find your spaces to feel that grief, to feel, get that reconnection, refuel?
Parijat (PAH-ree-jaath) (12:38)
It had to be after the NICU. There was no space in the NICU because that was minute by minute for so long. And then we graduated to hour by hour for so long and there's no room there to grieve. And I think if there are any NICU parents that are listening, I hope that you can hear the permission I'm offering if you need it to, it's okay to not grieve in the NICU. It's, you're in a survival state in the NICU.
Leah (12:40)
Mm.
Mm-hmm.
Yep. Yeah.
Parijat (PAH-ree-jaath) (13:08)
Your child may literally be in a survival state and that's okay. It will come when you are safe again. And so for me, it took many months after he came home because as anyone who knows with a NICU baby who has complex medical needs, the discharge just means you're no longer in the hospital, but you are packed busy with appointments and you are now driving and you are...
scheduling and coordinating and calling insurance every other day and you are busy so you're not it's not really different other than you're at home which is it is hugely different but the lifestyle is not so different so for me it took many months and i think it was when he finally started being discharged from some of his care providers i want to say it was probably about nine
Leah (13:51)
Yeah.
Parijat (PAH-ree-jaath) (14:05)
nine, 10 months in, I think is when he was first discharged from his first one. And I kind of went, this is not forever. Okay, okay, some things can change. And he started feeling, you know, kind of like how an ice sculpture comes together. And like, you start to see the chiseling happen. And as over the, you know, over that year, year and a half as we started,
Leah (14:17)
Right.
Yeah. Right.
Parijat (PAH-ree-jaath) (14:35)
no longer needing certain pediatric care providers.
And then we started to get to know him as he became, you know, more independent in his reactions. And he was not just a baby that we were doing things for, but his personality started coming through and he started smiling and he started crawling and, you know, things like that. was all those pieces had to come together in order for me to have the space to begin the grieving process. But I will tell you, it's not over.
it's not over because as they get older, there are new elements that present themselves to you that you may not have realized when you start connecting and going, this was also this new diagnosis or this new challenge, that's probably related. We can't say for sure in some cases and in other cases, it's pretty obvious and...
Leah (15:10)
Yeah.
Right.
Parijat (PAH-ree-jaath) (15:37)
and then to see your child having a new challenge to overcome or, you know, decisions we have to make for, schooling or for lifestyle that are, we probably wouldn't have made had he not been preterm. Not to say that it's his fault by any means or that it's his responsibility, but as parents, we want to give him and us the best possibility of the best life we can. And so,
life decisions have been different than we'd expected or where we are now is different than what we'd expected. And so it comes in layers, but the intense part of it was really began year, year and a half, I think after NICU discharge. And it took some time. It took some time for me to really allow myself to go, no, I'm allowed to feel this way because that sucked and I don't want it.
Leah (16:31)
Yeah.
Parijat (PAH-ree-jaath) (16:36)
I never wanted it. I don't want it for anyone else. That was unfair to really let myself hold that and go, what I went through was unfair. I didn't deserve it. He didn't deserve it. We didn't deserve it. I think that's when it broke open for me.
Leah (16:56)
Yeah, that's, there's like a, we see it a lot in, and for especially folks who are there for a long term, like you had to be there for a long time. We see often that we call it like a NICU burnout that happens when they're still in the NICU. And when we feel, you know, get a personality change suddenly and all of sudden a very agreeable family is now angry and combative or a, you know, a family who's, you know, coping.
Parijat (PAH-ree-jaath) (17:11)
Mm-hmm. Yeah. Yes.
Leah (17:26)
with pleasing is now coping with sadness. There's only so much we can take, right? And also knowing that you're absolutely right. that's a lot of times our families report, they feel like I fell off a cliff after we go home because now you have to find all those doctors instead of them coming to you and start to unwind what happened and continue to process it.
Parijat (PAH-ree-jaath) (17:49)
Mm-hmm.
Leah (17:56)
I'm really interested to know what you think could be done. How could we as parent mentors, how could we as NICU professionals, how could we as other NICU parents buffer ourselves or fortify ourselves while we were still in that traumatic time? Or is that not even the right set of words, right? Is it more...
you know, acceptance, you said, accepting this is where we are.
Parijat (PAH-ree-jaath) (18:32)
I think, are you asking for the professionals, you as mentors and professionals can help parents?
Leah (18:41)
Sure, how could we help? Because right as a parent who comes to the NICU, usually even if you know you're going to come and they've even, if you're lucky, gotten a tour of it.
we never know how we're gonna feel in that situation. Even if we've been a NICU parent before, this next time could be completely different. And we're just living in what we've got this time and how as parents last time, I never had this problem with breastfeeding or I never had this issue with postpartum depression or we're different people. We don't ever step in the same river twice. So as folks who are
Parijat (PAH-ree-jaath) (18:57)
Mm-hmm.
Leah (19:19)
very lucky like myself as a mentor, our NICU professionals who live this day in day out, who are looking, our families are looking to us to help give them some guidance or some stability. What do you think are the things that we could do better?
Parijat (PAH-ree-jaath) (19:40)
I think one is, I'm gonna speak very idealistically and we're gonna assume we have all the resources in the world to make this happen. I think making sure that there is somebody on the care team that can sit with the parents and answer all their questions regularly. And I think that's challenging for professionals because you're so used to every day seeing
this play out. for, and I remember this even in the NICU is there were some, some professionals there who, you know, my son was the youngest and the sickest. And so we got all the attention. That was not hard. That was not hard to ask for it. He's by default, he's got it. We've got it. But then I could see, you know, parents of babies who are born a little bit later, you know, in, kind of the third, early third trimester, kind of the 30, 32 week.
Leah (20:21)
Mm-hmm.
Parijat (PAH-ree-jaath) (20:39)
34 week kind of area where it was easy for the professionals to say, well, it'll be fine. You'll be home in a couple of weeks. You'll be home in a couple of days. And I recognize that because you have seen what my child has gone through and that may be very different than what that 32 weeker is going through. But to the parents, that is the worst possible thing that could be happening to them. And so meeting the parents where they are,
and answering their questions from that place, I think is hugely powerful because I think, you you walk in as a parent. And like you said, even if you've had a tour, I didn't get to do the tour, but my partner went in and had the tour. And even then, after my son was born, it was like a different planet. Like he didn't recognize anything that he had seen just a few days prior. And so, you know, really understanding that when parents walk into the unit,
Leah (21:23)
Mm-hmm.
Yep. Yeah.
Parijat (PAH-ree-jaath) (21:38)
What they're seeing is not what you are seeing. They don't know. We don't know what these monitors are. We don't know what these things are. We don't know that that is just an electrode monitoring heart rate that's not doing anything to the baby. Like everything looks terrifying. And so meeting them where they are, regardless of what's happening to the baby, I think is hugely helpful, answering all those questions that they're asking. Explain everything.
NICU nurses and neonatologists, I think, are some of the most patient people I have ever met. And so I imagine that most people are doing it anyway, but I don't think it hurts to reiterate, you're probably going to have to repeat yourself. And to do that without any judgment and shame is hugely helpful. And I think really helping parents and yourself to be in the moment.
Leah (22:21)
Yep.
Parijat (PAH-ree-jaath) (22:36)
I know sometimes it can be easy or there may be a pull to go, look, but you're so close. You're almost there. But as we were just talking about earlier, it doesn't feel that way. And so even when we're out of the emergency state of the NICU stay, if a parent is telling you, I can't do this anymore, I don't know how long I can do this. And you know, maybe discharges five days away. That five days can feel like,
in eternity. And so can we can we pull back and say in this moment, what do you need? In this moment? What can I hold for you? And and I think we've talked about this before, Leah, but silence is so critical that so many times we as parents, we don't actually need anything other than for you to listen.
Leah (23:07)
Absolutely.
Parijat (PAH-ree-jaath) (23:34)
Because what we're getting from the outside is so many questions. When are they coming home? What's going on right now? Has he gained the weight? Has he done this? And it's sometimes, many times, most of the times, we don't even have the answers for that. There aren't a lot of people, because a lot of the people in our lives are concerned. They love our baby too, and they want us to come home. They want us to be better. And so in the NICU, to ask just a question,
What do you need today? How are you today? And then silence and let the parents fill that silence. And sometimes it'll be filled with just silence. And that's what they need. That's what we need. I wished I'd had more of that. Can you just sit with me quietly? Cause I don't have any words or I'm tired of the words, but I am so alone right now. And your presence is making all the difference.
Leah (24:31)
Hmm.
That mindful presence is something that we hold very dear in the NICU, or ICU baby for our NICU families rather. Yeah, I think we see that difference. You know, I still go back to one of our very first times doing bedside support 10 years ago. And that's what it was. You know, sat down and said, how's it going? You know, and an hour later when this amazing mother had
been so afraid to be at bedside now shared her story and cried and laughed and talked and she processed a little bit that day and got just a little bit more comfortable in that space. Yeah, it's powerful. Our presence, it's most important thing. When we first spoke, you used these words which I really, really love but I want you to tell us a little bit more about it you had said.
depathologizing trauma. You know, that we're talking about these experiences being, traumatic, being very scary, being very unfair, being very, life altering really turns your world upside down, makes you think differently about all these things. and, I'm wondering if how you would explain this to those of us who don't use those words. you know,
Parijat (PAH-ree-jaath) (25:35)
Mm-hmm.
Leah (26:00)
and what's happening for our NICU family so they sort of normalize something that's not normal.
Parijat (PAH-ree-jaath) (26:06)
Yeah. Yeah. I mean, I think you said it right there. It's not normal. It's not normal to have a baby born preterm. It's not normal to have a baby who's full term and needing intensive medical care. And so looking at everything through that lens, you know, we at Rouvelle really use this, this line with all of our clients is ask yourself, how does it make perfect sense? What I am.
and then insert what I'm feeling, I'm thinking, what I'm going through, whatever. How does it make perfect sense? My professional background began in clinical psychology. So that is what I was trained in is truly assessing, diagnosing, and treating mental health issues. And it was when I became...
when I became pregnant after a loss and after fertility treatment and then developed multiple pregnancy complications that there was a moment I can still picture it. I can picture exactly the moment that it happened. I was in my living room and the sun was coming through the windows and I went, I cannot believe that what I am trained to do is to assess, diagnose and treat an anxiety if I came in as a client or a patient.
Leah (26:59)
Mm-hmm.
Parijat (PAH-ree-jaath) (27:26)
and somebody like me as the professional was there, I know what they would say to me. And as the parent now, I'm going, how does it not make sense that I'm worried about my child? How does it not make sense that I am terrified of losing another baby? How does it not make sense that I'm going to be anxious every day of my pregnancy because of what I've already been through and everything that's going wrong now?
Now that doesn't mean that we can't do anything to assuage some of those experiences, but that also it does not mean that what you're feeling is wrong. And that really, really resonated for me even more deeply once we came out of the NICU and I realized, you know, we had been traumatized by the entire experience from trying to conceive to being pregnant to birth in the middle of the second trimester to then being in the NICU.
and I could feel it in my body how much it had affected me. And again, I had this really profound moment of, of course, of course I feel this way. Of course this happened. It makes perfect sense. And so when I started doing this work,
I shifted away from clinical psychology primarily for this reason is I could not stand behind and be in a profession that pathologized a normal reaction to an abnormal situation. I couldn't do it anymore. And so what we really look at now with clients is let's shift our perspective from I need to calm down. need to stop. How do I make my anxiety go away? How do I make my fear go away? How do I feel more at peace? Instead of that, start with
Leah (28:54)
Mm-hmm.
Parijat (PAH-ree-jaath) (29:13)
How does it make sense that you're not that way right now? How does it make sense? How is it perfectly reasonable that you're in the NICU and you feel like a headless chicken? How does that make sense? How does it make sense that you're in the NICU and you're having a hard time trusting your entire team? Now that doesn't mean that's gonna be your forever reality.
Leah (29:28)
Yeah.
Parijat (PAH-ree-jaath) (29:36)
But we have to start there because after you answer that question and you believe it, the next questions are totally different than if we were trying to fix your experience.
Leah (29:46)
Yeah, nothing's wrong with you.
Parijat (PAH-ree-jaath) (29:48)
Nothing's wrong with you. Nothing's wrong with you.
Leah (29:50)
Yeah.
those hearing those words are just, really takes the teeth or disarms. I don't really love violent language, but really takes the sting out of those feelings, right? Those feelings are there because they're helping you or they're there for a purpose, right? They're trying to do something, right? They're trying to keep you awake all night, which we don't appreciate. But there's something going on there that we need to attend to.
Parijat (PAH-ree-jaath) (30:06)
Yes.
Yes. Yes. Yes.
Leah (30:24)
and absolutely destigmatize. You're not a difficult mother, or you're not a crazy father, you're not, you know, violent, or you're going through something.
Parijat (PAH-ree-jaath) (30:41)
Yeah, yeah, and what you're going through is you're fighting for your child. I don't know anything in the world that incites a more visceral reaction than that, honestly. How, I think asking pregnant people, asking parents in the NICU who are fighting for their children to calm down is so, I can't even find the, it's so inappropriate.
Leah (30:42)
Hmm.
Hmm.
Yes. Yes.
Parijat (PAH-ree-jaath) (31:08)
I think it's so detrimental to their health and the health of the family as they move forward and go home and kind of on. You're leaving them with a feeling of I'm doing it wrong. And how harmful is that? Right? As opposed to, of course you're angry. Of course you're sad. Of course you're overwhelmed and you can't think straight. Of course it makes sense.
We start there and we've got to really believe it. And that's, hard to do because the messages everywhere are, okay, but at least, okay, but just, okay, but can you try a little harder to make me comfortable? And so it's, it's hard. We spend with my private clients, we spend a long time on just that part of it.
Leah (31:49)
Yes.
Yeah, right.
Parijat (PAH-ree-jaath) (32:02)
in the recovery piece because it is very difficult to tune out the sounds and the voices coming from everywhere around you going, but you're not doing it right. But when you get there, is wholly freeing. There's a freedom that is reminiscent almost of very early childhood before the world got to us of like, whoa.
Leah (32:15)
Hmm.
Yeah.
Parijat (PAH-ree-jaath) (32:28)
Okay, nothing has to be fixed. Because then the next question is, well, then how do I want this experience to be? Of course, with a magic wand, we would say, I don't want to be here. I don't want to be in the NICU. But now that I am, right, exactly, let's do it different. But given that we're here, now that I'm not spending all my energy beating myself up or trying to be different in this situation, my next focus can be, okay, well, then how do I want to experience this?
And for me, that showed up as I want to be the leader of the NICU team, the way that I was the leader of my pregnancy team. I fully felt like I was at the head of that table and everyone was working for me. And I hope that every single parent gets that feeling because that is a fact. I know our lives, our baby's lives are in their hands, but at the end of the day...
Leah (33:15)
Yeah. Yep.
Parijat (PAH-ree-jaath) (33:22)
We get to say yes or no. We get to consent. We get to ask questions. We get to ask for additional advice from people that are maybe not even working at that hospital. We certainly did that. We had a close family friend who was a neonatologist far from our hospital. But I called him up one day because something didn't sit right with me with what they were recommending. And so I called him up, right? And you are at the head of that table. But you
Leah (33:37)
Yep.
Mm-hmm.
Parijat (PAH-ree-jaath) (33:49)
get to do that, you get to benefit from that, and you get to choose that when you stop holding yourself hostage or stop beating yourself up or expecting anything other than, makes sense that this is my experience. And then that's where the choice comes of, how do I want the experience to actually go going forward given that this is our reality here?
Leah (34:14)
Yes, this is, you know, we share these words like we say, you're the parent head of this NICU team. know, there's, and it's, you know, even with all the folks that we work with in the Family-Centered Care Task Force and across the country, this is really, this is it. I mean, that's incredible, Parijat. I I love to hear that it shifted for you when you...
Parijat (PAH-ree-jaath) (34:21)
Mm-hmm. Yeah.
Leah (34:42)
we're able to sort of say, okay, now I'm the head. Like now I know my purpose. I know where I stand and that that was very empowering. And that's where we really want our families to feel is empowered. This is your baby and you know your baby best, you know.
Parijat (PAH-ree-jaath) (34:53)
Mm-hmm. Yeah.
Leah (34:59)
Wow. You mentioned something about the outside world a little bit ago about pressure and questions. I'm wondering, with pressure from the outside world, and also perhaps even within ourselves for sure, to do something different, do it better. And then for sure, what you do a lot with your work is have another baby, change the story. Those thoughts can be really frightening and paralyzing.
folks in the NICU were thinking, I can never do this again. my gosh, you know, what can you tell us about what can be done, you know, to make the next experience better? Or at least not necessarily even the experience, but considering that, because I think it's a similar thing. spend a little bit of time in our minds worrying about a future opportunity or a future missed opportunity or another loss or having to do this again.
Parijat (PAH-ree-jaath) (35:56)
Mm-hmm.
Leah (35:56)
What are some things that you've found to be helpful to kind of keep us out of that spiral?
Parijat (PAH-ree-jaath) (36:02)
Yeah. I not to repeat myself again, but I will. We start with how... That's right. That's right. It really is what we just talked about. It's how does the spiral make sense? How does it make sense that I'm having a really hard time making this decision or I'm having a very visceral reaction that's saying I do not want to do this again or...
Leah (36:09)
We like repetition and it works because we don't remember things when we're in the NICU. That's line number one.
Parijat (PAH-ree-jaath) (36:30)
feeling really pulled to try again, but feeling equally scared that the same or worse could happen next time. How does it make sense? So we've really got to move away from this fix it mentality that is so pervasive in our culture. And it shows up in really surprising and hidden ways, right? A lot of people suggesting, well, just meditate on it or...
you know, practice some mindfulness or just calm down and then make the decision. That's not how the body works when you've been through something like a NICU trauma or birth trauma or any kind of medical trauma. The body doesn't work that way. So we start with how it makes sense. How does it make sense? How does it make perfect sense that this is hard? And we actually have an entire course dedicated to this for the preparation period, because there's a lot of people focused on the fertility and the reproductive health side, but
I know for us, it was that middle period of how do we even decide if there is going to be another one? Where's the help there? And so that's, you know, we have that at Rovell and our focus is really centered around gathering more information. So a lot of times we have found that many of the fears are rooted in too many gaps in the understanding of what went wrong last time, what happened last time.
because when you start closing those gaps, we have seen over and over and over again that there are things you can do to support your health to reduce those risks next time. I think one of the things that I have found in doing this work is that you hear a lot, well, a previous preterm birth is going to increase your risk of preterm birth next time. And actually, medically, we know that that is not necessarily true. Because if you can figure out what went wrong or what happened or what somebody missed last time, you can...
plug those gaps a little bit, and you can actually reduce that risk for next time. You have already experienced it, and so you know more now yourself, but building a team that also is dedicated to filling those gaps is hugely important. So we spend a lot of time teaching people how to fill those gaps. It's important to get those questions answered. We are of the mindset that we don't know means we don't know yet.
And so maybe it's your providers that don't know, or maybe it's your health system that doesn't know. We're in a time right now, so far at least, where telehealth is still available. You can cross state lines and make an appointment through one of these health apps and just talk to another provider and get another perspective. What do you think we missed last time? And I think that in combination with supporting your health through trauma-informed neurobiological somatic support, which is just a giant mouthful.
Leah (38:52)
Hmm.
Parijat (PAH-ree-jaath) (39:21)
of saying supporting your body to complete the threat cycles that weren't completed last time. That actually improves health. There's plenty of research that shows that. Those also reduce your risks next time. If you can do both of those things, then all of a sudden you're asking a question from a different place. You're not asking a question from the edge of the cliff. You're asking it from a couple miles back. And the answer still might be, nope, you know what? It's not worth it. I'm not doing it.
Leah (39:41)
Hmm.
Right.
Right.
Parijat (PAH-ree-jaath) (39:51)
but it's no longer a survival answer. It is true choice at that point.
Leah (39:59)
You're such a dream. I'm so glad that you're here. So you're the alphabet soup of the somatic care there. Can you give us some examples of what types of things those are? You mentioned really supporting your body through that experience. But is that something that I'd have to go to the Himalayas to do? Is it rock salt? What does that mean?
Parijat (PAH-ree-jaath) (40:28)
Right? No, it's true trauma-informed somatic work is very simple. Very, very simple. It starts with, and this is something NICU parents can start with immediately, and this is great reminders for NICU professionals to kind of support NICU parents with while they're in the NICU, is meeting basic needs. Are you getting enough nutrition? Are you staying hydrated?
Leah (40:35)
Hmm.
Parijat (PAH-ree-jaath) (40:57)
Are you emptying your bladder? And are you getting any kind of rest? And I don't necessarily mean eight hours of fantastic sleep. Rest can be even throughout the day, 10 minutes. In 10 minutes, spurts, right? Those four things. Because if we're not doing those four things, our body remains in a threat state no matter the circumstances around us. And so we start really basic. The thing is, when we're living in a survival state like in the NICU, we can't hear those cues.
Leah (40:59)
Hmm.
Parijat (PAH-ree-jaath) (41:27)
We can't tell when we're thirsty. And again, it goes back to that makes perfect sense because our bodies don't need to know that. That's not useful information at the time. so, you know, we really love supporting parents, parents to be with people around them to help them remember. And if it's not people, we've got reminders on our phones, on our email, you know, you can set all those.
Leah (41:33)
course.
Parijat (PAH-ree-jaath) (41:56)
we can use technology to our advantage and say, okay, every 15 minutes, this is gonna go off and every 15 minutes, I'm gonna take a sip of water and I'm gonna trust that past me knows that that's what I need right now and I'm going to do it, even if I'm convinced I don't need it, right?
Leah (42:08)
Yes, absolutely. Yeah, we've tried, we use a lot the, you know, oops, you have to feed your baby. Your baby has a feeding time or a touch time every two to three hours. That is also your feeding time. So you have to eat even if it's just a yogurt, a handful of almonds, a peanut butter sandwich, whatever it might be. We have to get something in at those times. That's it. If your baby eats, you eat. I love that.
Parijat (PAH-ree-jaath) (42:21)
Right.
Yes. Yes. Yeah.
Leah (42:38)
the visual of you can't hear, or in my mind it's visual, like you can't hear when you're in that state. And then you're also taking in so much sensory input that is not natural. So not only is your state internal noisy, your external environment is very noisy. And to see clearly through that is really challenging. Yes, using those timers, wonderful.
Parijat (PAH-ree-jaath) (42:49)
Yes.
Yes.
Yes.
Exactly. Yes. And I love that you said sensory because that's really the next level of true trauma informed somatic work is then supporting the sensory system. You described that so beautifully, so accurately that this environment is noisy. I like to remind people, and in my book, I use the example of running from a bear as a really simple example of what's happening physiologically in the body. Imagine what
Leah (43:12)
Hmm.
Mm-hmm.
Parijat (PAH-ree-jaath) (43:32)
you would do in the forest if a bear was screaming in your face? Do bears scream? They growl. No, whatever they do. Whatever vocalizing they do. Imagine that's happening. Would you be able to hear that you're hungry? Would you be able to meditate? Would you be able to call your whoever and give them an update about what's happening? No, you never would. And so you take yourself off the hook in the NICU.
Leah (43:36)
Hmm.
Sure.
Parijat (PAH-ree-jaath) (44:02)
And then when you're ready to do the recovery work on the other side, the sensory system is, find to be the golden key to getting right back into the body and start doing a lot of that recovery.
Leah (44:15)
Hmm. There's something that I'm hearing that you haven't said explicitly, so I want to make sure that I'm speaking correctly, but I've heard it, and that's that you, even if you were suffering when we're in the NICU, that it won't be forever, that we, you know, that we suffering from that anxiety or feeling like we're not doing it right or the fear or the confusion or the not remembering things and forgetting stuff and feeling like we're letting people down and disappointing and...
You know, never feeling like enough. What I'm hearing you say is even if we're feeling that way in the NICU, we still can heal. We still can feel better later. With help, we can get better, right?
Parijat (PAH-ree-jaath) (44:56)
Yes. Yes. Yes. Yes. 100%. Yes.
Leah (45:05)
Your journal, which I mentioned in the intro, which I also really, I think it's just wonderful and I've sent it to a few parents who have come out of the NICU. It's really helpful for that planning process and processing and things. Can you tell us a little bit, we include a journal for all of our families. It's guided and then has open space, but can you help us understand why journaling itself is helpful? Like, why would I subscribe to that?
Parijat (PAH-ree-jaath) (45:15)
Thank you.
Yeah, you know, I'll stay as an author of a journal. I will say that it's not helpful for everyone. So I want to give everybody an opportunity that if you're listening to that and you go, journal, sure, that's fine. That's totally okay, right? But the reason I created the body language journal as a journal specifically is because when we come out of a state like the NICU or after any kind of medical trauma,
Leah (45:41)
Mm.
Mm.
Parijat (PAH-ree-jaath) (46:02)
The Body Language Journal is designed to help you go inwards back to your body, which we have become disconnected from, understandably so, that's how it's supposed to happen. But it helps you come back into it. But what I found when doing client, one-on-one client work is that there are some people who are able to get back in there. I have thoughts as to what makes it easier for some and for others, but for some it's easier to do. And for others, it's really difficult to get into your body.
Leah (46:27)
Mm-hmm.
Parijat (PAH-ree-jaath) (46:32)
And the way that we do trauma-informed somatic work is by titrating, right? We do little bits, tiny bits, and then you pull out a little bit more, then you come back out. And so journaling gives you an opportunity, at least in the body language journal, to go into the body, because those are all the prompts are body related, but then you go into your head, leave the body, go into your head to write down the answer. And I found that for people who are having trouble doing somatic work because it can feel
scary for a lot of people who have not done it before or have bad experiences with it. This is a nice titration of going, I'm feel the body a little bit, but then I'm go into my head and write down the answer. And you get to practice so that over the next 28 days, you actually become more and more familiar with your body. So the actual somatic work that comes after that is not so scary anymore.
Leah (47:23)
Hmm.
Yeah.
I think that you mentioned it really struck a chord with me being afraid of our feelings, you know, how our body feels, not necessarily our feelings, but, you know, we just were talking this week about a feeling where, like, you feel almost sort of dizzy with the anxiety and how then that dials up your fear because why am I feeling, am I going to pass out? What's wrong with me? You know, what's wrong with me? Right. And exactly. Right. And coming
Parijat (PAH-ree-jaath) (47:37)
Mm-hmm.
Mm-hmm. Yeah.
Mm-hmm. Yeah, right? There you go.
Leah (47:58)
having a process to say, hey, no, nothing's wrong with me. I'm going through something right here. And it's a really wonderful gift to have. So you've become, I mean, I really, really admire you and your work and really become an expert in this field. If you could go back to Parijat and Nikyu, what would you tell her?
Parijat (PAH-ree-jaath) (48:30)
So many things. So many things, but I think...
Leah (48:32)
Hmm.
Parijat (PAH-ree-jaath) (48:37)
I think I would say, I don't have the right words yet, but what I would want to convey is it wasn't your fault. And the sooner you can accept that, the easier the rest of this journey is going to be.
Leah (48:57)
Yeah.
Yeah.
Those are words that I just, I, you know, I now am sort of speechless because this is something that I think is a really big, a common thread for us. A common thread.
So, I know we're coming close to our end here, which is sad for me, but we really sit with hope, know, hope being that we don't know what the outcome is going to be, right? But we're going to continue to believe and to keep going forward. And what does hope mean to you?
Parijat (PAH-ree-jaath) (49:58)
I'm thinking of a quote, believe it's by Desmond Tutu, that it's being able to acknowledge that there is light even if you can't see it. It's not exactly the quote, but that's my interpretation of it, is I don't think you even need to see the light yet. Just knowing that it's there, even if you're in pitch black. You hold on to that. And I think it's what...
Leah (50:13)
Mm-hmm.
Parijat (PAH-ree-jaath) (50:25)
What drives you continues to drive you forward. That knowledge that it's there. I just can't see it yet.
Leah (50:35)
Spectacular. I'm going to hold on to that myself. Yeah. Spectacular language. Well, thank you so much, Paritath, for your time, for your energy, for your commitment to the well-being of pregnant, planning to be pregnant, NICU families, recovering families, bereaved families, parents raising children with lots of differing needs. Thank you so much to...
you and your company for what you do in the world. We really, really need it. And I'm just really grateful that I got to know you. Yeah.
Parijat (PAH-ree-jaath) (51:16)
The feeling is absolutely mutual. Thank you, Leon. Thank you for everything that you do for, thank you parents like me. I wish I had known you back then.
Leah (51:26)
Yeah, me too. Well, if you're out there, thank you so much for joining us today. And if you are, you know, sitting at your baby's bedside now, maybe you're at home watching on a camera or watching a video, you're up pacing at night, you're pumping, you're at home post-NICU trying to make sense of all of it. Parijat and I want you to know that you're not alone.
Parijat (PAH-ree-jaath) (51:28)
and
Leah (51:54)
and we really look forward to being in your ears the next time. Thank you so much. Take gentle care.