The NICU Translated Podcast

Jillian Marsh (00:00)
I know you're

wanting to potentially bring on this part-time encourager. What if it was a actual like trained doula like NICU doula? What would that look like? And I think maybe that would be even better than somebody who's been through the experience and not saying that anyone that's been through the experience can do it because I've been through the experience. But I think being able to talk about like what trauma informed care is and how we can support people through

Mary Farrelly (00:13)
Mm-hmm.

Jillian Marsh (00:30)
some of the hardest, the most isolating days of their lives can really make a huge difference in how they'll leave the NICU one day.

Mary Farrelly (01:17)
Hi everybody and welcome back to this week's episode of the NICU Translated Podcast. I'm so excited to welcome Jillian Marsh as our guest this week. Welcome, Jillian.

Jillian Marsh (01:27)
Hi, thanks for having me. I'm super excited to be here.

Mary Farrelly (01:32)
Jillian is super special because she is one of the very first graduates of NICU Doula Academy and has her own NICU story to share and also a little bit about her kind of journey into stepping into the NICU Doula role and potentially even building out a NICU Doula program at her local hospital. So we have a lot to cover today, but let's just kind of start at the beginning if you want to just share a little bit about you.

and maybe a little bit about your NICU journey.

Jillian Marsh (02:02)
All right, I'm happy to. So I am in the Cincinnati area and I have always been very excited to be a mom. Always envisioned my journey to motherhood being very holistic. So I wanted a home birth. I had already hired a midwife. Like as soon as I found out I was pregnant with my first baby, had a doula, all the things.

And then right in the beginning of pregnancy, was experiencing severe hypertension and I was in the ER a couple of times and immediately it was like I paid my midwife the deposit. And then the next day I was in the ER with like unreal blood pressure that like you should not see those numbers. In the 200s, it was crazy.

Um, but I just was very shocked by all of it. And it was very surprising that throughout my pregnancy, there wasn't really anyone that told me like, Hey, you probably going to have a NICU baby. Um, everyone was still very positive. And I think somebody just being straight up with me and saying your baby is going to be in the NICU would have helped me a little bit. Um,

It was all like, might, you know, you might make it past 28 weeks. You should, or whatever, like just words like that, that made me hope for the best and not even think about the worst, quote unquote. And then I finally got my blood pressure under control. I had to stop working because I just was so uncomfortable and I got it under control.

Mary Farrelly (03:44)
Good.

Jillian Marsh (03:58)
Everything was good for a couple weeks. I was getting into my third trimester almost and my blood pressure just started going back up and we went to a scan and they said that her umbilical blood flow was abnormal and they wanted to hospitalize me for being the triage and I was like, okay, well that's weird. They're telling me, oh, I'll be out in three days. Cool. That's fine.

⁓ that went from being out in three days to the next day being like, you're going to be on bed rest until you have your baby to two hours later saying we're getting her right now. we're having a C-section later that day. So it was very shocking. was unprepared to have a C-section. was unprepared, for all of it. And at the hospital that I was at.

Mary Farrelly (04:35)
Mmm.

Jillian Marsh (04:49)
They typically do a NICU consultation with somebody from the NICU. My NICU consultation was 15 minutes. Most NICU consultations tend to be like an hour or two. They give you plenty of time to ask questions. I think they might even show you what the NICU looks like. We didn't have time for that because things were just progressing worse and worse with preeclampsia and they needed to get her out for my safety and for hers.

Mary Farrelly (05:06)
you

Jillian Marsh (05:16)
So she was born 26 weeks with IUGR, which is inner uterine growth restriction, size of a 23-weeker. So she was 500 grams, one pound, one ounce. And she killed it in her NICU stay. That's just a little bit about how the birth story kind of happened.

Mary Farrelly (05:37)
Yeah,

that's so intense to go from having this vision of, know, I have my doula, my midwife, we're have a home birth, all these things, and then be like, okay, you know, you have this little detour, but it's a blip, it'll be fine. I feel like sometimes healthcare providers tend to live in kind of toxic positivity land, or maybe like they have their underlying gut feeling, but they don't want the patient to quote worry about it. But at a certain point that kind of prohibits them from.

Jillian Marsh (05:56)
Mm.

Yeah.

Mary Farrelly (06:05)
doing any type, patients are doing any type of planning or foresight or having that space to think about what their options are and then to go from like, okay, it's happening soon or like, and I was like, it's happening now. And that's like a very...

Jillian Marsh (06:13)
Yeah.

Mary Farrelly (06:21)
your story and that timeline is shared by lot of NICU families, right? It goes from being like, sometimes it goes from being totally fine to like not fine immediately. Sometimes there's this like slow trickle from low risk to medium risk to high risk. in between there, there's within that whole conversation, that whole timeline, you had maybe a maximum of 15 minutes of a conversation about the NICU. Does that seem about right?

Jillian Marsh (06:25)
Mm-hmm.

Right.

Mm hmm. Yeah, pretty much. Yeah. And my doula

I mean, she, she kind of stepped back after I had her and she, she helped me with like getting my pump set up after having her she, she stayed with me like, she got there maybe 30 minutes before they took me back. And she just spent a bunch of time as much as she had just trying to help me understand what was about to happen with a c section.

So I am like super grateful for her. And then she stayed with me all night to make sure that I at least got pumping and everything like that. So she was amazing, but she did step back kind of after that and made sure I was okay just because she didn't know how to like support me through that NICU stay. And that was kind of like, I would say maybe the first like seed.

that made me think about like, ⁓ are there people that like know this kind of thing? Are there people that can help support families in this kind of like doula centric way? And it wasn't even until way after my daughter was discharged that I ran into your account randomly. And I was like, whoa, wait, this exists. And so we can talk more about that later. But it was just really exciting to see for sure.

Mary Farrelly (08:05)
I know, I feel like sometimes, especially the people that have been in these last couple cohorts, were like meant to connect. Like there's some like little piece of what is it, kismet or fate, where it's like the right people at the right time with the right information. And it's been really cool to make these like connections and help people along to their next steps. But let's talk now a little bit and then we'll kind of rewind and maybe.

visit like what as a NICU doula like what the vision is like how it could have been different for you I think that's really important to kind of reflect on but let's talk a little bit about your NICU journey with your daughter what was your Sometimes I like to talk about like what was your favorite memory of the NICU because the NICU does have a lot of joyous incredible miracle moments that we get to witness and then also maybe like where were you feeling supportive and where were those gaps like what were you feeling when you're

Jillian Marsh (08:31)
Hmm.

Mm-hmm.

Yeah.

Mary Farrelly (08:55)
like there's something missing in how I'm able to navigate this NICU journey.

Jillian Marsh (09:00)
Yeah, so my daughter, she was in the NICU for 155 days, which is about five months. I'd say that's pretty typical, a little longer than most 26-weekers, but I think probably just her size had to do with that. I'd say my favorite memory was she had just switched to CPAP and after doing

what many of us know of as Dart, the steroids to help with the lungs. And it was a very exciting time when she finally got to be extubated. And I had heard her cry for the first time, which was a really crazy experience. But they were getting her out and I had to wait 29 days to hold her.

Mary Farrelly (09:31)
Thanks.

Jillian Marsh (09:53)
because she was just in such a fragile condition. And I know we've talked about this in the cohort that some NICUs do it differently. Our NICU if they're on the oscillator, they did not get moved out of the isolette unless for angel care and that kind of stuff. yeah, when I finally got the hold her, it was amazing. But then later when she was on CPAP,

Mary Farrelly (09:53)
Mmm.

Jillian Marsh (10:21)
She was crying and they moved her to me and she was crying and as soon as she hit my chest, like she just stopped. And that was like a really sweet and surreal moment for sure. Just being like, like this matters, you know? That skin to skin. Not me getting a little emotional, but. ⁓

Mary Farrelly (10:29)
Mmm.

Thank

I mean, there's

nothing more magical than truly witnessing this skin to skin and seeing the bonds. Like it can feel so medical and isolating and stressful and overwhelming, but there are those pockets of like, this is my baby and I'm their parent and this matters and we're going to get through it. Almost like this like mutual like fist bump with you and your baby being like, I got this mom, you got this mom, like let's do this together.

Jillian Marsh (10:44)
Yeah.

Yeah.

Yeah. Yeah.

Yeah, for sure.

Yeah, and I felt so awkward in the beginning because like they had, you know, told me to, you know, give her like the hand hugs and the positive touch. And it just, it doesn't feel like even though I did it as much as I could, it didn't feel like I was really supporting her in the best way that I could. cause like, I feel like your natural inclination is that you want to hold your baby, you know? And so.

⁓ I just, at least I know that I showed up, you know, every day and I know that I'm sure she knew that I was there. And I think sometimes that's the best you can do in those situations is just show up and, know, keep track of what's going on and do the best that you can. And I think I was super grateful for the NICU nurses at the hospital. She was at the first one.

because they definitely took a lot of time with you to just kind of explain things and you know, they, a lot of them became like family to us. So we were pretty heartbroken when we got transferred. But I'm so grateful we were at that NICU when we were because if we were at the second NICU, I think it would have felt a little like even more isolating in the beginning. Like to have that.

support from the nurses when like nurses would come up that had never even had my baby and they're talking about like how sweet she is or how feisty she is and it just like meant a lot to me, you know.

Mary Farrelly (12:40)
The NICU family is very, very real. Like we, a provider in the NICU, like I bond with families and babies too. They become so much a part of my story as a provider and their stories become influenced like how I practice and how I care for others and having those like real relationships. when the NICU works and it works right,

Jillian Marsh (12:44)
Hmm.

Mary Farrelly (13:03)
it's clearly people taking care of people. Like it's the humanity, it's the beauty of it, it's those real connections, those real relationships where things start to fall through the cracks or can feel overwhelming and create those like pockets of trauma outside of the fact that there's so many unknowns and that we can never take away from the NICU is I feel like sometimes miscommunication.

Jillian Marsh (13:05)
Yeah.

Mm-hmm.

Yeah.

Mary Farrelly (13:23)
protocol driven without looking at individualized care, not listening to people's voices, or having respectful, thoughtful, collaborative conversations. When we lose sight of those relationships and that humanity, piece of it is really when I feel like we create these potential conflicts and feelings of unease or distrust or overwhelm for families too. But having the right team can make all of the difference so much. When you...

Jillian Marsh (13:26)
Mm-hmm.

Right. Yeah.

Yeah.

Mary Farrelly (13:50)
So you talked about having your NICU family How was it now that you're at that 100 plus day mark, you're five months in, it's time to go home? Let's talk a little bit about your NICU homecoming. What did that feel like? What did it look like? I guess just like a little bit about your experience with that transition from like the NICU to life after.

Jillian Marsh (13:52)
Mm.

Yeah.

It was super exciting. Near, I would say near day 120, I really started to lose it. I think I lost it like before then near around her due date was kind of when I started to feel more like feelings of frustration because in that initial time we had the NICU consultation and this is a general statement I will say, but like,

Mary Farrelly (14:20)
Yeah.

Jillian Marsh (14:39)
They were like, expect that your baby will be there at least until term. Some babies come out early, some babies take longer. for her, I think I should have like, I mean, nobody would know really. But looking back, I feel like I should have expected that she'd be there longer just because of her being so tiny. ⁓ Like maybe if she was typical size of a 26-weeker.

Mary Farrelly (14:44)
Mm-hmm.

Mm-hmm.

Jillian Marsh (15:06)
Maybe she could have came, like got discharged that term, but considering her circumstances, and where her lungs were at in the beginning, like there just was no way. And then that's okay. Now it is. But yeah, around her due date in October, I was starting to get frustrated. kind of used out of that frustration for a little bit as like more exciting milestones hit, like

being able to try some feeding and some breastfeeding and all that kind of stuff. ⁓ You know, that was all very exciting and felt very hopeful. But I would say 120-ish days in, we were going to get discharged. And then she got sick and it just kind of all went off the table. Like she was taking, I'd say about half of her bottles by volume and they were going to send us home with an NG tube because

Mary Farrelly (15:50)
Yeah.

Jillian Marsh (16:01)
that hospital will discharge if they're taking 80 % of feeds by mouth with an NG tube. And for the most part, I would say I'm a realist, but I do have a little bit of optimism and hope and all of that. So I was optimistic that maybe once we were home, we could try to get her moving forward. Unfortunately, after she came out of that sickness,

that she just was, it was like her reserve for feeding and it just took her so much more energy to try to feed. She was maybe getting five mls most of the time after she was recovered. And so we had the G tube conversation and ultimately decided to get the G tube. We were just excited to be able to bring her home shortly after.

And honestly, it was a great decision. And we were able to take her home after Christmas of that year. And I feel like we were pretty prepared to go home because we had already finished most of the like education that they make you do before going home earlier that month, because we were going to go home earlier. But I will say there was a disconnect between

the way I felt and the way my husband felt. ⁓ Because I was there pretty much every day. think I may have not seen her twice out of her whole NICU stay. Just because like, we made it work to, you know, make it so I could be there. And I know that's definitely a blessing. But I didn't want to miss a beat.

Mary Farrelly (17:22)
Hmm.

Jillian Marsh (17:43)
Because of that, I definitely knew how to take care of her. knew near the end they would let me do the G2 feeds, they would let me clean everything. They would let me pretty much take care of my baby. And then if I needed help, they would come in and they would be there for cares, the chart and stuff. But pretty much I did everything near the end. And we had my husband do things too, but it was like...

We kind of kept that NICU schedule, which I do have some regrets in the way that like we kind of stayed so rigid. I think it would have been a little easier for her to come off the G tube earlier as like a baby drinking milk. if we had done more cue- based feeding, but it's just so hard with a G tube baby because they're just always full for the most part. And we just kind of.

Mary Farrelly (18:34)
Mm-hmm.

Jillian Marsh (18:36)
stuff with that rigid schedule. And it did work for us in lot of ways. It was almost like a comfort type of thing to be able to know like what's going to happen next. But my husband just struggled a little bit with like, knowing how to take care of her, since she had the oxygen and the G tube coming home. But, you know, we eventually overcame all that and I think just practice and spending more time together, you get there and

For us, we had like very strict rules coming home with our family and friends. Like we pretty much isolated for three months, I would say, just because she came home during the biggest time in RSV season. And we didn't want to take any risks with her being so premature and having issues with her lungs in the past. And I'd say probably in spring, we re-emerged into the world, which was nice.

But yeah, I would say overall discharge and coming home was pretty smooth, minus just learning all the things we needed to learn to care for a medical-based baby. And, you know, I think I personally enjoyed going to the appointments, even though there were so many, just because it was our time to get out of the house. So, yeah.

Mary Farrelly (19:54)
Right, right, it's your excuse,

your permission, your green light, like these are our safe places, we can go breathe. Yeah, because that can be, especially as you mentioned, like the timing of discharge, can be a different level of isolation when you're like, I'm home, but I'm still kind of in this like.

Jillian Marsh (19:58)
Yeah, yeah, exactly.

Mm-hmm.

Mary Farrelly (20:13)
bubble to a certain extent, but your feelings that you were describing of frustration, feel like the like, NICU word for it is NICUitis, like families typically hit this point where they're like, I have been here, we have done the thing, I am all done now, please and thank you. I would like to leave and resume my normal life. And it can feel so sticky and like paralyzing. You have no control over this magical discharge date and there's so much

Jillian Marsh (20:22)
Yeah.

Mm-hmm.

Yeah.

Eh-heh.

Mary Farrelly (20:43)
of, I guess, pressure to like take that next step and meet those milestones and just like end that chapter and move on to the next one. But there's so much surrendering we have to do both as a health care provider and family to those unique needs and the unique story of the baby. But it can be helpful in the early days even to set kind of families up for knowing even more so about the flexibility of a due date. Because I think that I've seen that many, many times where families

Jillian Marsh (20:54)
Yeah.

Mm.

Mary Farrelly (21:12)
have heard at around their due date. And so that is this like, well, we're going to be that family, you know, like make that happen. Sounds good. I will not be the other one. Thank you very much. So when it does come to that point, it can feel like this extra level of grief. Plus you have all the additional emotions around due date in general, especially with a preemie and having that kind of reminder and this like specific day marker and time that kind of can be very

Jillian Marsh (21:18)
Yeah, right.

Yeah.

Yeah, it's very disappointing.

Mm-hmm.

Mary Farrelly (21:40)
triggering for families are still in the NICU with no clear discharge day. But as you said, sometimes those discharge days are always, they're very mobile too. When you think it's gonna be one day and then, we don't have the equipment or, we have to do this extra thing or even the opposite. Like we thought we going home Friday. Actually, we're all ready to go. You're gonna go home Wednesday now.

Jillian Marsh (21:41)
Yeah.

Yeah, they are.

Yeah, that's why

they say going to the zoo instead of ⁓ going home.

Mary Farrelly (22:06)
It's true roller coaster. Exactly.

But in your home and you're integrating and it is another thing that happens, especially with long NICU stays, is that life keeps going on in the NICU too. So especially oftentimes with partners, they're going back to work. They're doing regular life stuff. so there isn't, it's unfortunately in the United States how paternity, maternity healthcare is set up. It doesn't really allow for extended bonding, especially

Jillian Marsh (22:18)
Mm-hmm.

Yeah.

Mary Farrelly (22:34)
for NICU family specifically which seems like there's some motion to kind of start changing that and other countries are doing that which just makes sense but unfortunately we don't have that so there's then that like practical logistical piece of bringing another parent up to speed making sure that they feel as confident in the care of their baby but you also don't feel like the only person that can do the thing because that's a very stressful feeling too when you're in a relationship with family too but it is

Jillian Marsh (22:43)
Mm-hmm.

Yeah.

Mary Farrelly (23:03)
that the actual homecoming and just being able to be with your child in your environment, feed them on your own time and not be, you know, around other beeping wires, all the things is so freeing and so exciting and so beautiful. So let's talk a little bit about afters at this point, you've been home and what made you start thinking or I guess, Googling or reaching or trying to find out about this idea of a NICU doula

Jillian Marsh (23:09)
Mm-hmm.

Yeah.

⁓ I mean, after having her and after having the whole experience that I had, well, actually, let me just rewind to before even being pregnant, I was in ministry, and then I was also a part-time server. so I had always seen, like, thought my life would be like, I'm going to be in full-time ministry. I'm going to get to like,

lead worship every week and I'm gonna, you know, just that's gonna be my life. And as we were in the NICU and I took that step back from being in ministry because of the situation and we were very supported by our church family for sure, which was a blessing. But I will say like, I was just like, ⁓ you know, I'm gonna go to this church and then

like work there part time or like just thinking of like trying to find ways to make it make sense. But none of it made sense. Like the further we got, like the closer we got to discharge, I was like, actually, no, I think I need to like stay home. Like I think I need to be home with my baby because like myself and my husband are the only ones who know how to take care of her to the best of our ability.

Mary Farrelly (24:27)
Mm-hmm.

Jillian Marsh (24:46)
And especially with coming home with like medical equipment and stuff and you're, you know, um, loading feeds into a feeding pump and all of this kind of stuff. Like it's a lot of extra work. You know, most people know how to take care of a newborn baby. A lot of people don't know how to take care of a baby that has like the extra, um, needs going on. And so even though like it was very tight for us, we had just made it work.

with me to stay home with her and I think you know, I would have been happy to just continue staying home. But the more that I thought about it, I was like, wow, like I had this experience. ⁓ You know, it's still traumatic to think about like less traumatic now to think about and talk about it than it was like right after it happened. But as I continue to share my story here and there, I

Mary Farrelly (25:29)
Mm-hmm.

Jillian Marsh (25:42)
could tell how impacting it was, impacted other people were, but I'm whether or not they had NICU babies at one time. And then if they did, it was just like.

they knew they understand they understood to a level that most people couldn't and I started to be like, wow, like, I feel like I can actually talk about this in a way that I never thought I could like I can understand things pertaining to the NICU that I never would have imagined because I was the kind of person in school, like science was my worst subject. Okay. I never wanted like if

Mary Farrelly (26:19)
Thank

Jillian Marsh (26:22)
little old me knew I was potentially gonna work in a hospital, I would have been like, you're lying because that's disgusting. I would never do that. ⁓ I just have never been like, I'm more kind of like, I live in fairyland and I'm not like all about remembering like facts and all that kind of stuff. But I...

Mary Farrelly (26:32)
you

Jillian Marsh (26:46)
I I found a lot of comfort in learning more about the NICU and learning more about what can happen in the NICU and just helping other people through that experience that I just randomly came across your account. And I saw you were doing this NICU homecoming, Queen and Kings, I sent you my information. And I had heard some other people talking about like,

Mary Farrelly (27:05)
Mm-hmm.

Jillian Marsh (27:08)
doula work and I was like, ⁓ being a doula would be kind of fun because, you know, I definitely think I could do it. But then I was like, is there a NICU doula thing and like in your account, you said NICU doula. like, wait, hold on to this exists. I'm like, what is this? And so I had like sent you a message about it. I'm like, so what's going on with all this? Like, because I feel like this is what I should do.

and you kind of explained it and said like, I'm working on a course. Stay tuned, sign up for my wait list and stuff. And so I was very excited about it and was telling people like, hey, like, I think I might do this. Like, this sounds weird. I don't even know what it is. But like, I think I'm going to do it. Because it was just kind of like, I feel like in the very beginning, you're like, I'm working on it. So we'll just, we can talk more about what it'll be in the future.

Mary Farrelly (27:52)
Yeah.

Jillian Marsh (28:02)
And so I think my brain was just very like brainstorming different ways that it could work to the point that once it started and then hearing everyone else's story, and I feel like the majority of the people in the beta core cohort were doulas themselves. And I was like, wow, this is really interesting and exciting to see that so many doulas want to like, you know, step forward and try to be more supportive during NICU's days.

Mary Farrelly (28:20)
Mm-hmm.

Jillian Marsh (28:32)
it's like, I know that's not me specifically, cause I'm not, I wasn't a doula and I'm not technically a doula quite yet. mean, you, you know, but I don't know. I just got so excited and I think my heart has always been for families who are in the NICU at the moment. and so that's kind of where I've been led to, for what

Mary Farrelly (28:56)
Good.

Jillian Marsh (28:56)
can be coming

in the future. Well, you can get there.

Mary Farrelly (29:00)
It's so interesting hearing your background, because whenever we reflect on our, go back in time and like, this is why I did this, this is why I did this, this is why this happened, this is, and it was all leading to this point.

Jillian Marsh (29:12)
Mm-hmm.

Mary Farrelly (29:15)
The work that you do in ministry is meeting people where they're at, connecting with them on a human level, working as a server. I worked as a server for years and that made me such a better doula and nurse because you are building these micro trusting relationships as a server. You're making people feel comfortable and at home and welcome. And those are all major skills that you are taking into your work as a doula and then having your own lived experience as a NICU family, tying it all together.

Jillian Marsh (29:18)
Mmm. ⁓

Yeah.

Mm-hmm.

Mary Farrelly (29:43)
the perfect package of becoming and stepping into this specific role as a NICU doula. So, you in the moment everyone's always like, what is going on? And now you're like, it all kind of adds up and led this road led this way. And there's so much more to come too. So tell me a little bit about your the beta cohort is starting, we're in the course, you're going through it. What are you thinking about?

Jillian Marsh (29:44)
Yeah.

Yeah.

Mary Farrelly (30:09)
and exploring and did it like you know bring up anything for you and what were your brain was going that whole time you had so many good ideas even from like week one or two it was incredible to watch so i'm just curious like how how was that experience for you especially having lived the nicu yourself going through it now as a student learning about it

Jillian Marsh (30:18)
Yeah.

⁓ you know, it was really, it was really eyeopening for me. think, up until the point there was like,

I think like week three or four, you talked about risk factors of preterm labor. And as you're talking about like hypertension and preeclampsia and everything, it's like, things are clicking in my brain. I'm like,

like that's why that happened. Like it really brought me a lot of peace to know, like to have like a reason as to why the things happened to us that did. And, you know, I probably had hypertension before being pregnant and that's kind of what happened because I still take medicine for it to this day. But, you know, I think

Seeing that specifically really brought me like a lot of peace and kind of like healed some of like the parts of what I dealt with, which was really awesome. And then just hearing other people's stories was amazing. And I think I really just loved digging more into like what everyone did in the NICU, what the machines are in the NICU. I enjoyed being able to like...

explain things that like we dealt with. Because I think some things can be harder to talk about than others. And I think that at the end of the day, I really just love the experience because you have like, was it like 28 of us, think? 28 of us like just kind of talking about this thing that can be really scary and finding an approachable way to talk about it.

Mary Farrelly (31:50)
Mm-hmm.

Mm-hmm.

Jillian Marsh (32:11)
where we can hopefully help other people. And I don't know, it just brought me so much hope and peace to like know that like, hey, you know what, like you might end up in the NICU, but everything will be okay. Like you can be in the NICU and have support. And hopefully like as this grows, maybe that'll be like the norm to have a NICU doula or it'll be easier to access.

Mary Farrelly (32:35)
Mm-hmm.

Jillian Marsh (32:39)
for people, because I know there were some people that were talking about having it be like a Medicaid thing. Like that's incredible for people who are on Medicaid to access doula help. And yeah, I guess that would be it. Like, I don't know, I just really felt so encouraged by it.

Mary Farrelly (32:45)
Mm-hmm.

Thank

feel like one of the best parts is being in a space, like a live room with other people who want the same changes, want the same support network to be built, have the same or similar parallel visions for seeing the gaps in what supported care in the NICU could look like and wanting to step into that role and fill it. I mean, the NICU is doing an incredible job, right? We're building relationships. There's some of my colleagues and other nurses and healthcare providers are incredible people doing incredible

Jillian Marsh (33:16)
Mm-hmm.

Mary Farrelly (33:28)
work, but the reality of the NICU still leaves massive holes in the practical, the emotional, the logistical, the bonding, all the different pieces of holistic nursing care and holistic NICU care are missing and the doula role is really where that kind of supported

Jillian Marsh (33:42)
I'm

Mary Farrelly (33:47)
unique support person can step in and help walk alongside family so you don't have to feel like you're doing it alone. And so I know that you are...

Jillian Marsh (33:54)
Yeah.

Mary Farrelly (33:58)
stepping into and exploring and one of the very first people to actually start piloting a NICU doula program in one of your local hospitals. So it's so exciting. It is the other best part about the network is that everyone's still learning from each other. Like we're like, okay, this is how we're having this conversation. This is how it's being accepted or being spoken about or this is the logistical pieces that we're working through. So tell me a little bit about how you approached your

NICU with this concept and what that process is looking like to start stepping into an actual hospital-based NICU doula role.

Jillian Marsh (34:36)
So I think we were like week five of 10 in the class and we were getting close to Mother's Day and I had this idea with some of my friends to do like a make your own bouquet thing for NICU moms, which if we do it again, we will make the bouquets for them because that did not work as well as I thought. Like it was amazing, let them, they don't have time to make bouquets.

but anyways, I, had been talking to the care coordinator, the lead care coordinator with the NICU, about the logistics of what this event would look like. And then I just randomly felt like I needed to tell her what I was doing with the NICU doula academy. And so I told her and she's like, wow, that's amazing. I want to hear more about it. Can we meet because we have NICU encouragers, as volunteers and I

Mary Farrelly (35:16)
Mm-hmm.

Jillian Marsh (35:29)
was like, what are you talking about? I'd never met anyone in the NICU that was an encourager. I'm like, they must have all been gone or something because I did not see a single one. But it's okay. But she's like, we are wanting to hire like a part-time person to be a NICU encourager. And I'm working on a grant to like, write everything up. So it's like, ⁓ cool. Like, I feel like this is kind of my in.

Mary Farrelly (35:31)
No.

Jillian Marsh (35:53)
And so I met with her and I had like a whole presentation. Basically, it wasn't super formal or anything. I just kind of typed out some of the things that I've learned in NICU doula Academy and like my story with pictures. And I also printed out some of the studies that you'd shared about like how NICU doula care can really have better outcomes for families and for babies. And just kind of presented like, Hey, I know you're

Mary Farrelly (36:11)
Mm-hmm.

Jillian Marsh (36:21)
wanting to potentially bring on this part-time encourager. What if it was a actual like trained doula like NICU doula? What would that look like? And I think maybe that would be even better than somebody who's been through the experience and not saying that anyone that's been through the experience can do it because I've been through the experience. But I think being able to talk about like what trauma informed care is and how we can support people through

Mary Farrelly (36:34)
Mm-hmm.

Jillian Marsh (36:51)
some of the hardest, the most isolating days of their lives can really like make a huge difference in how they'll leave the NICU one day. And so I just kind of brought all of it up and we had like a very informal conversation about it. And she kind of left it at like, thank you so much for telling me about all of this. I enjoyed our conversation. You know, be in touch with you in the future. And I was like, cool.

You know, that was fun. I really didn't expect anything from it. And then I would say it was probably two months ago. She called me out of the blue. I was not expecting it at all. And she wanted to go over the details of this grant because she's like, we are writing this grant for you. And I was like, wait, what? It's like, what are you talking about? Because I just wasn't expecting it.

And I feel like sometimes just having those conversations where you're informed, even if they aren't formal, I feel like can help lead to real potential change. And so it's not all said and done. It's not official in the moment. But as long as everything, everything happens the way that we hope it does, then I should be.

able to support families as a NICU doula contracted NICU doula starting in January. So I'm really excited. Yeah.

Mary Farrelly (38:18)
That's

exciting. When you sent that message out, feel like everyone in the cohort left out with a collective scream. know, like, my goodness, what's happening?

Jillian Marsh (38:23)
Yeah.

⁓ I was just like speechless

when she said that I was like, well, what do you mean? I got off the phone. I was like, what is happening? Like, this isn't real, you know? It's just one of those moments.

Mary Farrelly (38:38)
It's so

exciting. I feel like NICUs instinctively

know we know that there's something missing, but the realities of being a healthcare provider is so restrictive. You have so much on your to-do list in a 12-hour shift from charting and all the tasks and all the things. There's just like missing, there's that missing piece and you want to do it, but some people don't even have, you know, that's not their skill set. They are really good at hands-on medical care and they don't really have the time, energy or background or training to be able to step in to a

Jillian Marsh (39:07)
Mm-hmm.

Mary Farrelly (39:12)
But NICUs historically have been very protective of their babies and their families, right? You don't want just some rando with a good heart, or like a better word, in this space. They want people who understand the NICU experience and are trained to be able to integrate and safely interact in a really vulnerable high-risk setting that is the NICU. So that's one of the visions when creating the curriculum for NICU Doula Academy was building in so much about scope of practice, integrating with medical teams.

Jillian Marsh (39:20)
Mm-hmm.

Yeah.

Mary Farrelly (39:41)
speaking from a place of collaboration and really working alongside and not interfering with the clear scope of practice of the medical care team. my dream is to continue to have these little, see, more Jillians out in the world doing that bedside work too because one of the beautiful things of NICU Doula work is there's so many different ways you can support families and a lot of your peers are doing that. A lot of people in the cohort and in the second cohort.

Jillian Marsh (39:49)
Mm-hmm.

Mary Farrelly (40:10)
or

that just graduated too. Some are working prenatally with families. Some are stepping along and working alongside families. Some are really specializing in the transition to home and everything in between. But stepping in, supporting families in the NICU as a NICU doula is a really brand new concept, so desperately needed. what is your vision for how you want this role, either your day to day or the overall

Jillian Marsh (40:14)
Mmm.

Yeah.

very much though.

Mary Farrelly (40:39)
experience? What are your dreams for it?

Jillian Marsh (40:41)
⁓ you know, we haven't really discussed like, you know, what it'll look like day to day, but for what I hope it will look like is I only have so much time. So it'd only be 15 hours a week. which is honestly perfect for my schedule. So then I can still be home with my daughter a lot more. but I really hope to be able to.

You know, you have lactation consultants kind of come in and out. You have different people throughout the NICU come in and out and check on you. And so I kind of foresee it being like that, where, you know, if I see a family is at a bad space, I'll be like, hey, how are you doing? Like, just want to check in. It's now a good time to talk. And then we can kind of just kind of talk about what's going on. You know, they can share as much as little as they want, but just giving them the space to like get whatever.

they're feeling out in the open and then, you know, can talk about like, how are you taking care of yourself? You know, are you, how are you feeling about pumping? How are you feeling about all these different things? But also just, I think one thing that I really want to focus on is like, are you feeling good about where everything's headed? What, whatever your care plan is for your baby and

Mary Farrelly (41:57)
Mm-hmm.

Jillian Marsh (42:00)
Are there any questions that you have about anything? there anything that I can help explain that they've told you that you may not understand? And then can we come up with like questions to ask at the next set of rounds that might help like answer any questions that they have that I could not answer or should not answer. And so. ⁓

Mary Farrelly (42:24)
Hmm.

Jillian Marsh (42:26)
That's kind of my thought. then another fun thing I think would be really awesome is to be able to maybe have like a monthly event set up or even bi-weekly, but just something where, whether it's something like one hospital we were at did like a weekly craft for families. So it's just kind of something to do with your hands that was distracting and you got to talk to other

Mary Farrelly (42:50)
Thank

Jillian Marsh (42:56)
families that were in the NICU too. And sometimes we talk about, you know, what's going on with our babies and stuff. And sometimes we just talk about how we feel about whatever, how terrible it is to get checked in or whatever the case may be. You know, just that peer support. I think I really want to be able to bring that forward because I definitely appreciated it about the second NICU we were in and the NICU.

Mary Farrelly (43:08)
I'm to bed.

Jillian Marsh (43:23)
that I'd be working in does not do events like that. So I think having something like that every once in a while would really, I think, help in a lot of ways. For example, one of our neighbors at our first NICU moved to this hospital we moved to before we did. We saw each other every day in passing. would kind of wave, look at each other.

but we never talked until we were at the second NICU. Like we were both there and both ⁓ doing the crafts and stuff. And then we talked and we became like really good friends. So I feel like being able to help kind of create a space where moms and dads and families can create those relationships would be really great.

Mary Farrelly (43:58)
Mm-hmm.

Yeah, I feel like, in general, making adult friends is very hard. It's not like you can be like, hey, you're in kindergarten, like, hey, you want to share my cheese stick, and now your best friend's forever. But you really need someone in these environments to be able to, as you said, create those safe spaces. Because the relationship with a doula is always going to be different than the relationship with a doctor and a nurse.

Jillian Marsh (44:14)
It is. ⁓

Right.

Mary Farrelly (44:35)
Families just know as a doula we're not providing hands-on care. We do not make medical decisions. We're not doing that. We are truly a safe space for you to kind of open up, vent, share your fears, share your concerns, and then help.

Jillian Marsh (44:41)
Mm-hmm.

Mary Farrelly (44:47)
together build up an action plan for either getting you your own kid that you need, helping you figure out your logistics of your life, helping you connect with the right resources because sometimes that is such a huge burden and as a NICU doula in a specific NICU especially knowing, okay, here's the right person to talk to about this. Here's the next step for this thing that you have a question with. And then also just having kind of that.

Jillian Marsh (45:00)
Yum.

Mary Farrelly (45:11)
sounding board for somebody who is going to listen and again doesn't have any quote skin in the game. You know it's not like you're you're venting to your

your own mom is a NICU family and that your mom is also emotionally involved or you know the doctor has 65 patients and they're trying to make medical decisions from a different lens. It's just different and it's really so valuable. It seems it can seem very simple on paper but the long-term impact as you mentioned there's so many studies that look at peer support and outcomes and breastfeeding and mental health which we know is such a intense piece of the NICU experience. Having someone who can

Jillian Marsh (45:26)
Mm-hmm.

Yeah, it is.

Mm-hmm.

Mary Farrelly (45:51)
tend to step into that role professionally and thoughtfully is going to, you're just going to make such an incredible impact on the families whose lives you touch and they're so lucky to have you, truly.

Jillian Marsh (46:02)
Thank you, I'm very

excited.

Mary Farrelly (46:05)
Well, everybody is listening. We're definitely going to have a part two once Jillian is up and running. Having worked in hospital admin for several years, things move very slowly in getting things up and running.

once they're in, they're in. So I cannot wait to see and hear about your first days and how this kind of plays out. So everybody that's listening know that we'll have a part two and kind of touch base with Jillian as well. If people want to connect or reach out with you and talk about maybe starting their own NICU Doula program, going through NICU Doula Academy and implementing it, what are the best ways for people to get in touch with you?

Jillian Marsh (46:41)
I would say the best way is honestly Instagram. That's probably the app I'm on the most. I will eventually have like a NICU doula handle once I'm finished with everything for certification. That's just kind of where my focus is at. But for now, it will just be my personal account, which is at one dot redeemed dot mama. So yeah. Thank you.

Mary Farrelly (47:04)
we'll put the link in the show notes too. So if anyone wants

to shoot Jillian a DM and talk through anything, we'll know where to find her. And thank you so much for sharing your story. And as we wrap up, do you have any, I guess like words of wisdom or anything just that you want to share with the NICU community or anyone who maybe is still in the trenches listening to this podcast?

Jillian Marsh (47:12)
Yeah, be happy to talk.

And be

I think for someone who's in the trenches. You know, this is cliche, but take every day, one day at a time, you know, they're going to have highs and lows, but just show up and know that showing up, you're already doing an incredible work for your baby.

Mary Farrelly (47:45)
It seems again simple and small, it's the connection. It's the humanity. It's those little micro moments. That's the magic. That's where it adds up. And NICU is chapter one, and there's so many beautiful next chapters to come. So thank you so much, Jillian, for joining us, and I can't wait to talk to you again soon.

Jillian Marsh (47:49)
Mmm.

Yeah.

Yeah, for sure.

Thanks for having

me.