Hello friends 👋
In this conversation, Leah and Morgan discuss the complexities of being a parent in the NICU, emphasizing the importance of finding one's voice and advocating for their child. Morgan shares her personal journey, highlighting the challenges and triumphs she faced while navigating the NICU environment. The discussion covers themes of power dynamics, the stigma of being labeled a 'difficult parent', the significance of family-centered care, and the necessity of self-care for parents. Ultimately, the conversation aims to empower NICU parents to embrace their role and advocate for their child's well-being.
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Takeaways
Power is the ability to achieve purpose and affect change.
Parents in the NICU often feel powerless due to the sudden onset and set up of the NICU.
Family-centered care can significantly impact a child's outcome.
Parents should be encouraged to speak up during medical rounds.
It's important for parents to advocate for their child's care.
Feeling like a 'difficult parent' can be a barrier to advocacy but can be overcome.
What care you give your baby you should also give yourself.
Hope is essential in the NICU experience.
Parents should accept help and support from others.
The NICU is a place to build advocacy skills for future challenges.
Links
Learn more about the Family Centered Care Taskforce at www.fcctaskforce.org
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The transcript of today's episode can be found below 👇
Leah (00:03)
I was recently thinking about something I have learned from Brené Brown about power. She reminded me of how Dr. Martin Luther King Jr. described power. It's the ability to achieve purpose and effect change. She also talks a lot about power over and power with. This is particularly in the world of leadership and workplaces. But it really struck me when we talk about how important families are in the NICU and how the current power balance exists there. It's easy for outsiders, like family and friends and providers, to say to a parent, speak up. Or worse, to lay blame with the statement of, why didn't you say something? When using our voice, especially when we may have been told recently or historically that our voice doesn't matter, or what we have said hasn't been taken seriously, it makes it even harder. It becomes even more daunting when we're thrust by a premature birth or critical illness or traumatic birth into a position, the NICU, that is not made for us. It's not made for you, the parent. You understandably do not have or feel like you have the quote unquote power because you don't have the training, the years of experience, the really high-level skills, or even the objectivity that goes with making life-and-death decisions, or even seemingly ordinary daily decisions. But yet, here you are, a NICU parent, fighting for your baby's life and having to learn everything all at once. How do you find your place? Tap into your power, which you have. How do you use your voice?
Today we have a very special NICU mama to help us find our way. Morgan Kowalski. She is a wonderful human who is the mother to Thomas, a former 25 week and one day preemie. She is the program manager of the incredible Family Centered Care Task Force. She is also a quality improvement partner at Golisano Children's Hospital NICU at the University of Rochester Medical Center, where she has been impacting change since 2020. And she also helped implement their small baby unit there. She's also a Vermont Oxford Network family partner and serves on the American Academy of Pediatrics Family Partnership Network. She is using her power to achieve purpose and effect change. Welcome Morgan.
Morgan Kowalski
Thank you, Leah. Thank you for that beautiful introduction. I got the chills. What a wonderful way to kick off this podcast. Thank you for having me.
Leah
It is truly a pleasure. Morgan and I met at the very esteemed and very beloved Mary Coughlin's Science and Soul Conference just recently in Boston. And she shared a story with me that I think I go to bed with and wake up with and share with everybody that I know. And I'm wondering if you would share that with us about your experience in the NICU.
Morgan KowalskiYeah, absolutely. So I think what you're referring to is maybe the incident where my son coded. And so I'll start by saying that Tommy was, I think, the sickest infant in our level four NICU for a very, very long time. He was on the jet ventilator. And after about six or seven weeks, he was maxing out.
Leah
Mm-hmm.
Morgan Kowalski
vent settings, and we needed to make a decision on how to move forward. We decided that we would try a PDA ligation to try to close the hole in his heart. And just before that procedure was supposed to take place, providers allowed me to hold skin to skin on the jet ventilator, which wasn't common practice in our NICU roughly six years ago.
Morgan Kowalski
I saw it for what it was, this opportunity to hold my infant potentially one last time. At the time, his heart was just the size of an almond. And to go in and do this procedure, regardless of how common it is, was scary. It was going to be scary. And so while I was holding Thomas, he had an unplanned extubation and coded. Providers worked on him for over an hour. My mom and sister were with me that day. They were asked to leave the room. I was also asked to leave the room, but I said no and was allowed to stay.
Morgan Kowalski
I watched them providing two finger chest compressions on my son, on his gray lifeless body. I was looking at the sats on the monitor in the single digits and just looking around our room thinking, I'm gonna have to pack all of this up and leave. This NICU empty handed once and for all.
Morgan Kowalski
So just as things were kind of coming to a head and a decision was gonna need to be made on how to move forward. One of the providers at the bedside suggested that we retry intubation one more time with a fresh tube. And our respiratory therapist was kind of in and out, x-rays were being taken. She was pretty pregnant and was trying to avoid the radiation. so somewhere in this mix,
Morgan Kowalski (06:31)
of chaos. mean, of course, there's some lost time for me in this event. Somebody needed to know. No one really could recall the size of the breathing tube that he needed. one nurse rushedout to the computer to start pulling up the chart to see if she could figure out what size the tube was, somebody else started digging through the trash to see what size the previous tube was. And in this moment of life or death, I, as Tommy's mom, was able to call out the size of the breathing tube. It was a three. And the tube was secured, it was placed, and my son started to recover. And as I remember it, Family-centered care saved my son's life. I wouldn't have known the size of the breathing tube had I not been invited to rounds. I wouldn't have known that I could call out the size of the breathing tube and share that knowledge even despite not being a provider if I hadn't been encouraged to speak up by physicians. And what if I had been forced to leave that room. I felt like I was a member of the team. And in that moment, I proved my value.
Leah
Say that for me again, Morgan. What if...
Morgan Kowalski
What if I had been forced to leave my son's room?
Morgan Kowalski (08:20)
in that moment, like many parents are.
Leah (08:26)
Yeah. This is, you know, not something any parent should have to go through ever, right? This is the imbalance of parenthood right here. in that moment, or maybe in the moments before, let's back up to like a level five instead of a level 10 of the stress, where you said, you know, if you hadn't been in the room to know that the trach tubes had sizes to begin with, right, that's not something we as parents know, you know, we don't, we don't know what all the things are, we're not supposed to, that's not our, that's not our job.
How did you get involved in the beginning? How did you... Was there a moment that came to you that was like, okay, this is what I need to do. This is how I should pay attention. This is my purpose here in the NICU.
Morgan Kowalski
Yeah, that's a great question. I remember when I had my son, I was just 25 to me that's a young parent, a young mom. And I...
Morgan Kowalski
You know, I was still inpatient a few halls over when my son was admitted to the NICU. And, you know, after I was discharged, I went over to the unit and I kind of just felt like, all right, they've been managing this for the last two days while I was inpatient. Am I really needed here? Like my role is just to kind of like sit and be present and pump breast milk. And I wanted to bethere for my son. I wanted to be with him because I was really worried that he was going to die and I didn't want him to die without family. So for me, being present was really important, even if that just meant sitting in the room and participating in care when possible. And I was just feeling really worthless. I was feeling really, I was feeling a lot of shame for doing this to my baby and doing this to my husband and our families and kind of putting us in this situation.
And I also just felt like, wow.There are so many resources and people in this hospital using all of this equipment, all of this time, all of this energy to keep my child alive. And they have to do that because I failed. And they're having to go to all of this trouble because of me, because my body didn't do what it was supposed to do. So in all of this, in this shame spiral, our attending physician at the time came in to, you know, look my son over once more before he left for the day. And he asked me if my son's abdomen had looked the way it was looking earlier in the day. And I noticed that it was really red and it hadn't looked like that. And I communicated that and he was like, okay. This is good to know, we're gonna run some tests. He comes back later to share that we were able to capture cellulitis before it was septic. As we know, infants who are within that first 48 hours of life and who developed sepsis have a 2 % survival rate.
Leah
Hmm. Wow.
Morgan Kowalski
So.In that moment, instead of just delivering that news and then going home, you know, he was already getting home late, right? Because he had just ended up having to stay and run these tests and then communicate the results to us and the treatment plan to us. In that moment he changed the course of my family's care.
Leah
Hmm.
Morgan Kowalski
He said, we are not sitting at this infant's bedside all hours of the day and night. You are. You need to speak up when you notice things like this and help us because we aren't here to notice these little changes. And there are so many of us. We're always rotating. So we need you to have those steady eyes and let us know when something doesn't look or feel right. And That was really all I needed to hear. I felt like now, instead of just kind of sitting in the corner and being an onlooker, I was invited to participate on a deeper level. That's when I found a preemie textbook in our NICU's library and I started researching everything.
I started teaching myself what each and every diagnosis meant, what each and every med was for that my son was on. I was participating in rounds every day, asking questions, and not every physician, not every attending physician at my NICU was probably thrilled about that. I know that there were folks who labeled me as a difficult parent.And that certainly made me want to sit down and shut up. But I felt kind of a consistent encouragement from that specific provider and some outstanding nurses and NPs and other clinicians on the unit to just keep doing what I was doing because... They felt it would really impact my son's outcome and ultimately it did.
Leah
Yeah, I would say so in the most ultimate moments, right? That's, and hopefully most folks don't have to get to that, but we know that the outcomes for babies and families, are incredibly impacted. And that's something we'll talk about later with the Family Center Care Task Force, which is this national and international movement. But I want to talk a little bit about maybe that how you handled some of that pushback. So being labeled, and I’m air quoting, the difficult parent, we hear that a lot. The interesting thing for myself being 10 years into this particular work is that some of those providers who label a parent as a difficult parent will also be the ones in the future to be like, well, that's the parent that made a difference for their baby. So in the moment, it might be difficult to handle, but they look back and go, well, that's what we needed.
How did you handle that friction? How did you shore up or maybe just do it uncomfortably when you said you felt like you wanted to sit down and shut up and retreat to being the wallpaper? How did you step back in?
Morgan Kowalski
Yeah, I remember that being really, really hard. I remember just incredible discomfort. I mean, who was I, the person who put us all in this position, to say anything or disagree or share my thoughts and feelings? It was really difficult to lean in to some of that discomfort. I think ultimately how I was able to overcome it is I kind of told myself this person's feelings and thoughts about me are far less important than ensuring my son lives. And so I'm going to speak up and say what I want to say. And if it means something's improved for my child, then it's worth any discomfort myself or anyone else in the room is going to feel. And it was, I mean, it's easier said than done, right? And there was a lot of times that I really had to remind myself of that. And, you know, of course the majority of experiences are positive, but there are those providers who don't respect your view as a parent And are quick to label.
And I think once that label is placed, you feel that. feel there's body language that goes along with that label. I'm sure that if a group of parents, no matter how big or small, got together and labeled you as a difficult provider, you would feel that. And it would make your daily duties much more difficult because of some of that nonverbal communication or kind of push back and collaborating.
Leah
Yeah, absolutely. It's something, yeah, mean, and our providers are humans too, and have a hard day and feel threatened by presence and things like that. But I think you're absolutely right that that is, that's a feeling that's across humanity is to feel left out or othered or labeled. And as parents who are living this day in and day out, it's not something additional we need as the judgment. Our parents don't need judgment about our presence at the bedside. Something I was just speaking with Parijat Deshpande who in the last episode and she was talking about always not feeling like you're doing it right.
You know, I feel like I didn't do pregnancy right, didn't do delivery right, not doing this right. And I think that judgment at the bedside from our providers who, and I've pointed this out before, Most parents just want the providers to be happy with them, right? We want to do well by them as well. We want to show them that we're paying attention and we're learning and we're being good parents. And so to have, again, this is the power element where now they're kind of making us feel bad. It's really, it can feel bullying or even abusive sometimes, that feeling of not being able to get their approval.
Morgan Kowalski
Mm-hmm. with so much at stake.
Leah
Yeah.
Morgan Kowalski
with so much at stake.
Leah Yeah. Yes, and that's another thing I want to zero in on a little bit is knowing that this is out there of working through folks who may not be as welcoming to parents being active providers, right? I'm not just talking about a parent at the bedside, but active participants really getting involved in care, asking lots of questions. There's some...There's always some discussion and some hesitation that I hear parents talk about, which is if I say too much, if I caused too much problem, it's going to be taken out on my baby.
Morgan Kowalski
Mm, that's valid.
Leah
So, and your quick response, I don't even have to ask the question. Do you feel like that's a valid feeling? Yeah.
Morgan Kowalski
Yes, absolutely. Whether it's warranted or not, that's huge concern.
Leah
Mm-hmm. Right. Yeah. And that's not something we want our folks to be spending their beautiful, amazing, powerful, you know, fighting for life energy on, because that's not the way it should be. So you mentioned one thing that stuck with me, which was the being invited in, use that language. You got invited to be this care partner, know, the head of the care team, you'rethe parent head. If you could offer that to somebody else, what would that look like? If we're not gonna get it explicitly from a provider, how do we know that we're welcome there?
Morgan Kowalski
I think the reality is that you might not be welcome.
But I think that the NICU is...the place to build your voice, your advocacy skills, work on being uncomfortable when it comes to advocating for your child because I think the unfortunate reality is once you leave the NICU, you're going to be...navigating in-home services, you're going to be navigating appointments with follow-up clinics, you're going to be navigating specialties, you're going to be navigating the education system. And I wish that I could say it gets easier after the NICU. It just changes.
Leah
Mm-hmm. Yeah.
Morgan Kowalski
And I think that, you you deserve as your parents' child to speak up for them. That's your job. And if anyone wants to invalidate that, let them. But it's not going to change what you're doing as a parent.
You know, you're always going to come up against folks when you're parenting who have judgments and it's very, it can be extreme in the NICU. But I think I'm telling you right now, you're invited. You're invited to be at your infant's bedside as much as you want. And as much as you are able, you are invited to be at rounds on the phone during rounds. given a follow-up call after rounds. In fact, that's your right as your infant's parent. And I'll be the one to give you permission even if you're not getting it at the bedside from providers.
Leah
Yes. Yes, I want to second that as well.
Yeah, it's, what's that quote, that there is no infant without a parent, there's no baby or no child without a parent. Our babies don't exist without a parent, right? So.
Morgan Kowalski
And ultimately, we are the ones taking that infant home from the NICU.
So it is in everyone's best interest for us to know exactly what's going on, to know our baby, and to know how to care for them.
Leah
Yes. Something we really strive for is creating that comfort, that confidence at the bedside, right? So, you know, I heard you say, you went out and looked for the information, you found the book. You're like, all right, let me find that book. Now we're in a technological age where you can watch a video, you can listen to a podcast, you can get the information.What do you think are some other things that are beneficial?
Morgan Kowalski
I think something else that would be helpful is getting access to your baby's chart on your iPhone and just start scrolling. I mean, if there's a word that you don't understand, pop over to the Google app and type it in and write it down. Have a notebook handy so that if you need to kind of keep track of some things that you can write it down and refer back.
Morgan Kowalski
And maybe there's even a question that arises as you're kind of doing this that maybe you want to clarify with providers. Like, hey, how are we addressing this? Same with the med list. Go down through the med list and take a look at what's there and Google that med name with infant albuterol and just see what the applications are just so that you have a little bit of a better handle for yourself on what's happening.
I think that would be my next thing. Just take, use what you have already. If you're not ready to speak up or you're not ready, you don't have those questions formulated or you don't even know what to ask. Start there.
Leah
Mm-hmm. Yeah.
Yeah. One question our, one of our mentors always likes to use is what should I know about this? You know, like they say your baby has RDS. What do I need to know about that? What should I know about necrotizing enterocolitis? What do I need to know about this? Asking that sort of open ended question when you don't know where to start is a wonderful place to start.
You also mentioned rounds.
Right? being able to be in rounds. And most, not all hospitals allow parents at rounds. And that can be overwhelming, right? And I think there's something about giving ourselves, again, knowing we're not the ones with the professional degree. We didn't go to school for 10 years to do this, right? You're getting kind of dropped into this. It's the grace to not know. to say, I don't understand that, help me understand that. And it's a different position to be in, especially for our folks who are used to being the leader of the pack or someone who knows everything about their profession or has other children and you knew how to do all of that. And now this is a whole new experience that nobody's ever modeled for you before.
Yeah. You, I want to talk about your shame spiral for a minute. And I heard you say, I'm the one who put us here. And I'm interested to know what you mean by that.
Morgan Kowalski (27:57)What I mean by that is... It's because my body failed. It's because I failed as a pregnant mother to do what I was supposed to do to fulfill my pregnancy that everyone around me is now in crisis.
And yeah, my feeling is like I should bear the brunt of that. Like it's my, I put us here so I should carry that for everyone around me. Which is wrong, let me see. Yes it sure is. It sure does.
Leah (28:35)
That’s a lot of shoulding.
Shoulding stinks.
Think about the words you use there for yourself “and everyone's in crisis” and they're doing their jobs. That's what they've trained for, is to show up because it's not your fault. This happens. This happens almost to anyone. There are, we know, very clear lines of the disproportionate effect, but it really happens to everyone. And that's why there's an entire world of trainees and doctors and nurses and social workers and respiratory therapists and family support programs. Because this happens toso many people and it's never their fault.
Because I know everything you did in this pregnancy now, when they said, want you, you instantly jumped in, gonna pump milk and I'm gonna sit by the bedside and make sure he's not alone. And then I'm gonna speak up and I'm gonna do all the things. You sure as heck did those when you were pregnant. You sure as heck used your power and your skills and your knowledge and your physicality to do everything you could. for that pregnancy to be as healthy as you could control. And after that... just happens.
Morgan Kowalski
That's very true. Thank you for saying that. I feel very fortunate to have found an incredible therapist about six months after discharge who has really helped me work through a lot of that. and I invite others to do the same. And if therapy is inaccessible, free peer support. I this is a very widely held belief among NICU mothers that we are to blame, that we failed.
Leah
Mm-hmm.
Yes.
Yes, and I wasn't going to let you get away with it today because you are amazing. And I hear it a lot. You know, I think it's been on the 10 or so episodes we've had just in Beyond the Beeps,everybody has brought it up, this feeling. And I know folks who are listening feel the same, just, you know, it's we blame ourselves and
Morgan Kowalski
Thank you.
Leah
It's not your fault.
Morgan Kowalski
And we would never blame a friend or a sister or a cousin. We would never look at them and say, well, you did this to yourself. Sorry, go figure it out. We would say, how can I help? What can I do? Don't blame yourself.
Leah
And that's, there you are.
Mm-hmm. That's right.
That's right.
Mm-hmm. Let me hold some of that for you for a little while. It's a complete self-control situation, so it's understandable. You're, well, the one thing I can do is shame myself. Pretty good at that. No, right? I mean, look at what you do now, right? And this is a wonderful way for us to get to all of the amazing things that have been created out of,
Morgan Kowalski
Yeah.
Leah
parents' experiences in the NICU, providers' experiences in the NICU, healthcare teams, you is, you you worked on the work at the hospital where Tommy was born, and then you took this position as program manager for the Family Centered Care Task Force, once again validating that this happens to way more people than we would care for it to. and we deserve, like you said, you deserve, better care. We deserve family centered care. Our providers deserve it, our babies and our parents. How did you get involved with the family centered care task force?
Morgan Kowalski
I was really fortunate to be invited to the Executive Council of Family Partners by co-chair Colby Day, who was the Associate Medical Director during a lot of my QI work at my local NICU and who is now the Medical Director of that institution. And I felt like, you know, looking around at the other family partners on their Executive Council.you're Elizabeth Simonton. I'm like, I don't deserve to be in the same room as any of these people. mean, these folks have their own organizations. They're working with their state quality care collaboratives. They have spoken at conferences. They've collaborated on physician education. I it felt incredibly profound to be part of that group and a lot of imposter syndrome on my part.
the Family-Centered Care Task Force held a scholarship application to go to Gravens. And so I applied and won and went to Gravens. And it was kind of a big deal because I had never traveled. I mean, I've... traveled from New York to Florida for a conference. I'd never done that before. I'd never been to a conference of that magnitude before. I didn't really know what I would, you what my role there would be, but I just kind of felt called to go out on a limb and go. And I would, you know, that's where I met Malathi and there was a need for a program manager. The previous program manager was going back to school. She was going to midwifery school and so... that position was open and I had to say yes. I mean, it's been the most life-changing decision I ever made. And Malathi Balasundaram, our founder and one of the co-chairs is, she's a force and she truly cares about family-centered care in the NICU. She cares about empowering me as her co-lead. I mean, I feel that this organization is as much mine as it is hers and that she values my thoughts and ideas about how we progress. And there's really been no cap on what we can do. It's just been so fun and so rewarding to be part of this.
Leah
She invited you in once again. We're talking about, she invited you to be part of it. It's incredible.
What does the Family-Centered Care Task Force do for those of us who aren't in the industry?
Morgan Kowalski
So the Family Centered Care Task Force, our mission is to help NICUs implement or strengthen family centered care in their units. And we do that by providing free education in the form of our bi-monthly webinars, which are free. We do that by providing free resources, by providing free office hours each month where folks can come to us with their challenges and barriers to implementing family-centered care and brainstorm with other leaders in NICUs around the globe on how to overcome those challenges and barriers. We provide free educational resources outside of our organization by partnering with other folks who are trying to do a lot of the same work in this field. So it's really become kind of the hub for people who are looking to get into this work or who are looking to level up. And it is incredible. It's incredible.
Leah
Yeah, I have to say having attended not as many as I would like, because I'm usually in the hospital when you have your office hours, but listening to the webinars. And it's really a veryvalidating and empowering space to be with so many movers and shakers and thinkers in the world of medicine and health care and social work.family support, psychology, emotional wellness. I mean, really spans, gosh, really, it's a really comprehensive group of people. And just to sit in the same room virtually with everyone and listen to how people are thinking and how they're problem solving together, it's a very uniting opportunity. So if those folks who are listening, if you're interested in this type of space, I really encourage you to give it a listen and to attend because it's, if you're the one pushing it out on your end in your hospital, you have a huge support system. Or if you didn't know it even existed, it's amazing to hear what folks are doing, knowing the possibilities are. It's really powerful space and I'm super grateful to you all for creating it. And I've heard folks from other hospitals across the nation, know, say, I listen to it when I'm vacuuming on the week or on my drive into the hospital in the morning. Right. So it gives them, you know, that feedback into their own head of that positive reinforcement, that real uniting sisterhood of of loving care of trauma informed thought processes of family centered neurodevelopmental care, all the wonderful things we're really looking for for NICU babies and their providers and families. It's really a great space.
Morgan Kowalski
Thanks, Leah. think members like you help to make it as such. think the energy and passion that folks like you bring to the table is really profound. And I would just add to anybody who's listening, I think that the idea of implementing family-centered care sounds amazing. And to have some free education and resources around that is great.I think what sets the family-centered care task force apart is We will also teach you how to navigate your institution's financial landscape in order to show a return on investment for family-centered care in the NICU, how to pull that data, who to talk to about advancement opportunities, funding, how to get your hands on a paid position for family partners in your unit. So I invite you to join and...to steal shamelessly from our organization.
Leah
Yeah, and also Dr. Barbeau, who's here from the incubator, which we are on their platform here, she's also in there too. So more opportunities to hear from her, which is always a good day.
Morgan Kowalski
fortunate. She is an excellent resource for us. Yes. Yeah, she is phenomenal and we are very, very
Leah
Yeah, I mean this is, you know, look at your brief, because it'll be a very long tenure hopefully, of this type of work that you've committed yourself to and thinking just six years ago, right? Tommy's six now, or seven, six. Going from, you know, wee youngster, 25 I would agree, that feels young.but maybe that's cause I'm old, but, being on the, on the wall flower, right? To going out on a limb. heard, I heard you say that. And I love that visual imagery of going out on limb and saying, this is what's right for my baby. Trusting your wisdom, trusting your inner voice, listening to the provider just took that one. Thank goodness. That's it. Do it. to now expanding and that's something all of our families, I hope that they. can tap into is hearing your strength. lives within them as well. You know? If it's, yeah, talking to another parent who's there, using your voice to comfort someone else, or talk to your family advisory committee if you have one, or your parent mentor team, starting that yourself if you need to, or going all the way up the chain like Morgandid.
Morgan Kowalski
Absolutely.
Leah
It's incredible how you've how you've done this in short, it's a short period of time.
Morgan Kowalski
Thank you so much. It hasn't been without the right folks to help me there along the way. It's been my calling. It's been the reason why my family suffered. And I hope one day Thomas can feel very, very proud of how I've been able to bring meaning to his pain.
Leah
Hmm.
Yeah.
You were with him for all of that. Everything he experienced. I wonder if he will perceive that as pain. Something tells me no. He will perceive it as love. He went through something tough and mom was with him and advocating for him and standing by him and holding his hand and letting him know, you know, we can do this. You can do hard things like Glennon Doyle tells us. And when mom's got your back, yeah.
Morgan Kowalski
Thank you for that. I'm feeling emotional hearing you say that. Thank you.
Leah
Yeah.
It's something I think we've come to know about early childhood, early infancy. Tommy knows his mama was there. He may not be able to tell us about it, but that feeling is strong.
Morgan KowalskiI
love that. Thank you.
Leah
Yeah.
He's We use the word hope a lot in the NICU and the ICU baby. I'm not sure if you even think about this word, but what does hope mean to you?
Morgan Kowalski
I think in the context of being impatient in the NICU, to me, hope means...
Setting aside your child's prognosis, diagnoses, complications. and just...bringing a positive energy to the bedside and.and being excited about their future, whatever that might hold. And I know it's hard to even grasp that your infant might have a future.
I know it certainly was for me because that's not promised to us as NICU parents. But I think... you know, in the same way that you as a parent don't want to be labeled or shouldn't be labeled, we should not be doing that to our infants, even despite what a physician might be saying or predicting or discussing in regard to the care plan and your infants, you know, expected outcome. I think just really, it's important to have that information, but it's also important to kind let it go in one ear and out the other and just feel... to stay positive about your infant's outcome, even when it doesn't feel positive.
Leah
Hmm. Yeah.
Yeah, it makes sense. It makes sense.
And if you were to go back, or if you're thinking about a family who's in the NICU today, right? They're listening to us today, or you go back to Morgan in the NICU, what words of wisdom would you have for that family? Or maybe yourself?
Morgan Kowalski
I would say that as fiercely as you're advocating for your infant and as deeply as you are caring for your infant in a very kind of hands-on way. I want you to do that for yourself as well. You would never deny your infant food. You would never deny your infant sleep. You would never deny your infant a moment of levity, a walk outside, a phone call with a friend, the offer of a coffee. Don't deny it for yourself. welcome it, embrace it. It was hard for me to accept help. And I would say to anybody listening, accept it. Accept it gratefully, accept it. If someone wants to make you a meal, let them. If someone wants to, offers help, ask them to go let your dog out today. Just embrace that. The people around you love you and they wanna help you. Be open to it.LeahThat's beautiful. Yeah, that's beautiful. Amazing. Morgan, you are a beautiful human. think that's what Mary Coughlin called you. An extraordinary human. And I feel super grateful to be, you know, in an orbiting sphere near you and have the opportunity to do work with you.
Morgan Kowalski
It's mutual. Thank you, Leah. Thank you so much for your kind words. Thank you. I feel the same way about you. You are just, the work that you're doing is incredible. And, you know, I just feel so kindred with you and I wish I could give you a big hug. It is, it is.
Leah
Yeah, I know. That's the only thing missing from this. Amazing. Well, I thank everybody out there for listening to us today. And hopefully you're feeling a little more willing or considering stepping out on the limb and take the invitation. You are invited into the NICU to be with your baby and to speak up.and to be part of their care team. And you can always reach out to us if you need support. So thank you so much everybody for listening today. And if you're out there by your baby's bedside recovering from a night of lost sleep or making a phone call watching your baby on the camera if you have one, Morgan and I want you to know that you are not alone and we're We're right there with you. And we look forward to being in your ears again soon. Take gentle care, everyone.
Morgan Kowalski
Take care
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