NICU Stays, What it means to be the parent and support people with Mandy Wannarka.

This episode gives an inside view of what to expect as a NICU family and some ideas on how to support loved ones who are involved. 

Mandy Wannarka LICSW, PMH-C RYT-200
Mandy is the owner of a group psychotherapy practice (Mindful Wellbeing) located in Coon Rapids, Minnesota. The practice is dedicated to supporting individuals and families into their transition into parenthood. Together with the other clinicians at her practice, they have over 15 years of experience supporting families with NICU hospital stays, complex medical concerns, birth trauma and pregnancy, infant and child loss. Mandy became the Director of the Helpline for Pregnancy and Postpartum Support International in 2019 after serving as a mental health professional on the Helpline. She is certified in Perinatal Mental Health and EMDR (a type of therapy that focuses on helping people health from trauma or other significant life experiences). Her practice is working on expanding into other holistic methods of supporting individuals including yoga, reiki and more. 

One thing you'd like our community to know about pregnancy, postpartum or parenting (could be something about your personal story, facts/figures, inspiration for others, etc.) *

You are not alone and your story matters. Mandy believes that by sharing our stories with others, we can not only get the support we deserve for our own journey, but strengthen our connection to one another and provide support to others. 

There are some great local organizations that are offering direct and indirect support to the NICU community. They include: 

Minnesota Neonatal Foundation:  https://www.neonatalfoundation.org/
The Potato Head Project: https://www.thepotatoheadproject.org/
Fiona's Hope Totes: http://www.fionashope.org/

Some great national organizations that support NICU families include: 

Hand To Hold: https://handtohold.org/
March of Dimes: https://www.marchofdimes.org/baby/the-nicu-family-support-program.aspx
National Organization for Rare Diseases (NORD): https://rarediseases.org/
Graham's Foundation: https://grahamsfoundation.org/
Postpartum Support International NICU Parents group: https://www.postpartum.net/get-help/psi-online-support-meetings/

Transcript

Speaker 1: 0:12

[inaudible]

Speaker 2: 0:15

Welcome listeners to baby brain PPSs podcast. I'm Samantha, cuculla your host. And with me today is Mandi Wanaka. She's an MSW LIC, SW, and owner of mindful wellbeing. Welcome handy.

Speaker 3: 0:28

Hi, good to be here.

Speaker 2: 0:31

I'd like to start by having people share their personal connection, not only to P mans, but to PPS. M do you want to tell us a little bit about that?

Speaker 3: 0:38

Absolutely. So I am a mother of two and while I wasn't diagnosed, um, either postpartum period formally with a PM ad, I did definitely have my own journey to noticing an uptake in anxiety. I had some complications with my first that resolved within the pregnancy, but definitely put me a little bit more on edge and a little bit more super scary kind of first-time parent, um, aspect. When we were pregnant with our second child, we ended up, I ended up in the hospital with a complication that ended up being about five and a half weeks of bed rest followed by some modified bed rest at home, and it really reduced our activities. And we had a toddler at home and it was really complicated. So, uh, well we had really good, um, end results with our daughter. We still had a lot of disruption to kind of what we had planned to be the typical second pregnancy and really, uh, heightened my desire to lean into this population.

Speaker 2: 1:38

How has BPSM been involved in your journey?

Speaker 3: 1:41

I have training as a hospital social worker, and so I spent five years supporting families in the ICU or neonatal intensive care unit world. And while I was on that journey, I frequently referred to PPSs as a resource for these families. And as I did that work, I just kind of felt called to continue to deepen my connection with PSM and started with volunteering as a helpline mental health professional answering calls from parents who were looking for more support for, uh, complications and anxiety, depression, things that come up. And then I chose to also participate on the being part of the board. So I am now currently the helpline director, helping everyone stay organized with answering those calls.

Speaker 2: 2:26

We're going to talk more today, specifically about the unique challenges that face parents of NICU babies. So let's start by telling us a little bit about what it's like as a NICU parent.

Speaker 3: 2:38

Yeah, so there's so many things that the NIC U changes for parents who are either first time or subsequent parents, really the biggest piece being that there's a big interruption and disruption to what we would consider the normal or typical bonding experience that happens between parents and their children. So when we have a infant that is admitted to the NIC view, there's a lot of reasons why babies end up there. But regardless of the reason, parents often feel that they're in a really foreign environment. It's not the environment that they had planned, but more, more so than that, there's a lot of, um, extra scrutiny going on about what their parenting may or may not look like because they're not in their typical home environment. And there can be a really big, uh, focus on feeling kind of like you're in a fishbowl or everyone's kind of looking at you and that there's a lot of reduction of privacy as well.

Speaker 2: 3:39

The NICU can be a really scary place for many reasons. One of them is the physical environment. Can you tell us a little bit about the equipment that you might see?

Speaker 3: 3:48

Absolutely. So every NBCU is a little bit different, but there's some commonalities that you're going to see depending on where your NICU journey starts, whether it was at the moment of labor and delivery planned or unplanned, it's really likely you're going to see a hospital room that has a lot of equipment in it. That's used to help monitor the baby. So things like a lot of extra wires, uh, those are connected to monitors that will be looking for how well your baby is doing how well their heart and lungs and other organs are working and their systems. So there's a lot of extra noises and lights and things like that. Most NICU's have some sort of desire to protect privacy through there's curtains and things like that. So it kind of looks like a regular hospital room, but you might also have a baby who ends up being in, in I select or a enclosed space that helps with, uh, doing some of the work that babies need, like keeping them warm and kind of contained to mimic what it might've been like if you had a baby that was born early, for instance,

Speaker 2: 4:50

The physical environment, along with some of the health complications can be problematic or interacting with baby. Tell us a little bit about what that looks like.

Speaker 3: 5:00

So one of the things that's really important to understand is that you, as a parent are a really important member of the care team. In fact, you should really view yourself as the lead of your care team. And with that comes a lot of responsibility and that's certainly no different than any other parents, whether you have a baby in the NIC where you bring your baby right home. But the important thing is working with your care team often, it's the bedside nurses where this starts and kind of branches out to the other people that we'll talk about today, but there's really no question that is too big or too small. We know about what is the most helpful for families, including their babies is that early frequent and consistent parent involvement really improves the outcomes for your NICU babies. We know that based on the research even years later. So it, even though it can be a really difficult thing asking how you can help with baby cares and that sort of thing, not only helps give you a bit of a sense of control, uh, but also really helps with a baby's development

Speaker 2: 6:05

And who might be on that care team, who would we expect to come in contact with as a NICU parents?

Speaker 3: 6:10

So there's a lot, the care team can be really vast and broad depending on what brought you to the ICU in the first place. But it's often at the base basic, uh, component involves a NIC nurse. So someone who's going to be at the bedside, that's probably the person you're going to have the most face to face time with. And you're going to have a doctor, typically a neonatologist, someone who specializes in babies who are sick or needing support in that first year. Other people that you might see in the ICU that are really important members might include a case manager or a social worker, or both. They help you with the kind of nuts and bolts of navigating the NIC. You as well as getting you ready to go home. If that's part of your journey, the other people that can be really important could be chaplains or spiritual care coordinators. There's also going to be people like occupational therapists, physical therapists, music therapy, depending on NAC you and some of the resources available. There will be these specialist available to not only assess what your baby needs, but what your family might need. The other specialists that are really helpful would be child life specialists. They can help with integrating family. And that can be really important now. And in the future,

Speaker 2: 7:31

It seems like the NICU journey, it may be fraught with a lot of complicated feelings and even loss. Can you say a bit more about that?

Speaker 3: 7:40

Yeah. So there's a lot of ways that people end up in the NIC queue and while we wouldn't be able to cover all of those ways in this podcast, what I want to normalize is that there's some people who go into an ICU stay with either past experience or a planned complications. So something is identified during pregnancy and they work with some high risk OB teams typically called maternal fetal medicine that are really going to coordinate something about what it's going to be like to be in the ICU. And the team is often ready for those families, but that's not really the predominant number of families that end up being in the ICU. Most families end up in a, in a pretty, um, unplanned way. And when we talk about experiencing something, I'm an unplanned perspective, we know that there's a huge deviation from what we were expecting versus what we were hoping to achieve or experience. And with that comes a lot of feelings of loss. We often in the mental health world call this ambiguous loss because it's not a loss that can be measured the same that we might measure someone with, um, with like a death in the family and that sort of thing, because there's kind of no end in sight. It doesn't, it often defies resolution. It means it doesn't quite, um, just kind of go away on its own. It sometimes needs more of our direct attention. And so this, uh, loss is often something that's really complicated because you're also dealing with a lot of the day-to-day push and pull of trying to be present and engaged in your child's care. So there's just a huge amount of loss that often hits parents kind of in waves. So we'll sometimes see that, you know, when people are in the NSU, but more often than not, there's just no time for it. And so what happens is families end up, you know, going home and then experiencing difficulty finding a rhythm. And then that's when they sometimes have a little cue that something is maybe a miss.

Speaker 2: 9:36

I think that's sometimes from the outside looking in, or if people are not familiar with NICU stays, there can be a belief that once you leave the hospital, everything is fixed, but that's far from true. So what happens when you head home from the NICU,

Speaker 3: 9:50

When you had a home from the NICU? I think there's a lot of reconciliation that has to happen between what you were hoping, everything was going to look like and what you are left with. And so there's some reorientation that happens too. And some people kind of hit their stride when they go home. They, they had an acute thing, something, you know, identified and fixed in the NSU setting. And so they go home and they can just kind of get back to the quote unquote, normal, uh, tasks of being a parent. But there are certainly many families who experienced something really different, which is that they have some extra considerations when they go home, that they have to take care of, for instance, a lot of extra appointments for their children to monitor whatever the thing was that was going on in the NIC view, uh, or extra considerations like, gosh, you know, best case scenario, your child really shouldn't go to daycare like every other kid. And so those things, those bumps in the road, even after the NICU create a big ripple, even in their kind of ongoing quote unquote normal life,

Speaker 2: 10:50

What kind of relationships are formed in this NICU journey?

Speaker 3: 10:54

One of the most beautiful things about being an NSU and supporting families was the relationship that we often had with families. There's very few times in people's lives when they get as vulnerable as having a brand new baby, uh, just in general. And then when you end up at a hospital, stay in it and extra complications, uh, there's a lot of fragility to that situation. So the parents often talk about and engage with such a diverse care team that, you know, bedside nursing, uh, is probably the primary place that many NICU parents report having the strongest bond. But everyone that walks into their child's room really does create a really big impact. And that can include everything from, you know, those really heavy hitters across the care team like neonatologists and nurses, but it can also include some of those other staff members like chaplains and administrative, um, cleaning people. You get, you, you find a rhythm that works for you and the people that walk into your child's room become part of your extended family.

Speaker 2: 11:57

Do you have any suggestions for ways that NICU parents can seek support or help to deal with some of the complicated stress?

Speaker 3: 12:05

Yeah. There's a lot of really great resources out there. Uh, I think that there's these kind of tips and tricks we can talk about. And then there's also some resources that we can, we can lean into today too. But the biggest piece is that there's a huge stressor in your life, um, when you transition to parenting and when you're in an ICU that just gets multiplied. And so it's really important to be first and focused on those basic meeting, those basic needs, which are typically called self care. And that can be things like getting good sleep and nutrition. And while that's certainly advice, we give every single parent that is in that new postpartum period. I think it's extra important for, um, the task at hand. If you're going to be involved in your baby's cares a lot and visiting you really need to be focused on making sure that you're not wiped or drained or, or even getting sick. Um, we also really encourage people to celebrate big and little milestones along the way. There's a lot of ways you can do that. Uh, this is again, another spot where I feel like bedside nursing is kind of like the unsung hero, because they're really lead into this. They'll be the ones that are often at the bedside to, um, help to your parents on and capture some of those milestones if you have to step away. And one of the things that we all understood supporting NIC families is that life doesn't stop outside of the NICU. So a lot of times parents get pulled to other tasks, whether it's parenting other children at home or having to get back to work and navigating some of those decisions. So the milestones component is a really big way to make sure that you are capturing your journey and making meaning out of a really difficult situation.

Speaker 2: 13:48

Are there some more structured ways to help parents get that support, uh, support groups or professional contact,

Speaker 3: 13:55

Postpartum support international runs a NICU support group. That's really great. And, um, there's also some kind of local resources that are really great as well. So there's definitely some stuff out there. It's sometimes hard to keep track of all the different organizations and everything that are leaning in to help parents. And so there are some people, some, I guess I would call them navigators at the hospital level that can be really helpful. Um, this is often the case management or social work team that can help you be in the know about the different things that are out there. Some NIC use do have, uh, run like little mini support groups and that sort of thing. And I'd encourage parents to take advantage of those as well.

Speaker 2: 14:35

What about those of us as family and friends that might be supporting Nick, your parent? What kind of resources or tips and tricks do you have for us?

Speaker 3: 14:44

Yeah, so there's a lot that we can do to support people who are experiencing a NICU stay. And, um, that could be something like making sure you're offering really specific support. So instead of the words of encouragement are great, like we're thinking of you and everything like that, but it's also really helpful to offer something like, Hey, can I watch your other littles at home? So you can go and visit baby. Um, can I feed your cat so you can go, or so you don't have to pop at home back at home, a meal trains are great offering to do laundry. I mean, the more specific you can get, the better parents don't necessarily need you to just say like, let me know if you need something. That's just not really, they're not in a season where they can really take advantage of that, but, um, put it on your calendar to be checking in on them on a regular basis. And especially once they get home, as you mentioned, it can be, you know, the NICU stay itself is pretty isolating and has a, a routine of its own. But when you get home a lot of time, people just kind of assume you're back into the rhythm of life. And that's not always the case. So checking back on them, but certainly not just necessarily popping in. Um, but making sure you're doing that in a way that is respectful of kind of all the considerations of visiting restrictions and that kind of thing can be really helpful and important.

Speaker 2: 15:59

That's a fantastic idea to put a little note on your calendar. Pop-up alert in your phone to check in on this family. That's two months into their NICU stay and see what they need today. Do you have any ideas of things that we should actually avoid saying, doing or offering for NICU families?

Speaker 3: 16:20

Yeah. I think that it's really important to understand that every NICU journey is really nuanced. Um, one thing we haven't yet touched on today is this idea that some families don't go home with their babies, some babies journeys end in an ICU. And so it's really important to honor that this is a really difficult time for families. So any, any wording that starts with like at least or something like that, like at least everyone is okay or everyone is alive, can be really invalidating to how significant this experience can be. Um, and additionally, it's really sometimes unhelpful to explain other people's worst case scenarios. Like, well, so-and-so had it worse, those kinds of things. Um, if you're struggling with what to say, it's okay to just say like, I'm so sorry, that sounds really intense. Or we're here for you. We're thinking of you, we're sending positive vibes your way that can go a really long way in just letting people know that you're present and that you're you care. And that, you know, you're, you're engaged in how they're all doing

Speaker 2: 17:20

Any last words of advice for NICU parents or somebody supporting them.

Speaker 3: 17:25

It's just really important to honor that this is really intense. And so make sure you're honoring your emotions along the way, which is way easier said than done, but there's a lot of people and a lot of supports that are there for you. So, you know, we'll be sure to include some of that information, um, on the PPSs website. And there's a lot of mental health, uh, support that can be available to families. We know that families who experience NIC stays are much more likely to experience mental health symptoms and the increased severity in those symptoms. So it's not uncommon for families who experienced NICU stays to have symptoms related to post traumatic stress disorder and you don't have to do it alone. There's a lot of really great resources out there. So reach out for help often and reach out for help for those who have earned the right to listen to your story. And if you do that, you're going to do the best you can to help them move forward with that journey.

Speaker 2: 18:19

Thank you very much for your time. For more information on the resources that Mandy discussed to see the description of the podcast below, also for information about her private practice, you can find the link for her website.

Speaker 1: 18:46

[inaudible].