Difficult Conversations Podcast
Lessons I Learned as an ICU Physician
Episode 194 | February 12, 2024
Not What I Had In Mind
On this episode, Dr. Anthony Orsini and Liz Poret-Christ introduce guest, Laura Diaz-Freeland, whose twin daughters were born at the very limits of viability at just 23 weeks gestation. Laura’s memoir, “Not What I Had in Mind,” is discussed, highlighting the emotional journey and the deep empathy found in motherhood that she experienced following the birth of her extremely premature daughters. Dr. Orsini was part of the team who cared for her twins and they discuss the bond that Laura forged with the medical staff. Laura discusses at length the emotional rollercoaster, exhaustion and helplessness that she and her family experienced. The episode covers the profound advancements in neonatal care and the ethical dilemmas faced by parents and medical professionals in the treatment of such young infants. As a seasoned professional in marketing and creative writing, Laura’s poignant reflections highlight the importance of informed choices in the face of life’s most fragile beginnings, giving voice to the silent struggles and triumphs of preterm birth.
Laura advocates for parental choice and informed decision-making in cases of extreme prematurity, sharing insights from her 224-day hospital experience with her twins. She stresses the need for compassion from healthcare providers and the importance of informed consent. Dr. Orsini and Laura delve into the delicate conversations that occur in neonatal care, emphasizing the need for a supportive team approach to patient care. Laura recounts how, despite feeling alone during the initial decision-making process, she later felt part of a team at the Hospital that was committed to her twins’ survival. Laura also mentions the unique nicknames she has for the medical staff, like ‘The Godfather’ for Dr. Orsini, and ‘Behemoth Hands’ for the surgeon, reflecting their impactful roles in her and her daughters’ lives. For parents navigating this journey, we end with Laura sharing advice to parents to educate themselves, be gracious with themselves, and to not yell at the medical staff. Please hit the subscribe button now!
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Laura Diaz Freeland (2s):
I understand very much the need to step back and see a baby as a patient for your mental health. As a physician, you cannot get emotionally involved in every case, you wouldn’t be able to function. I don’t have to be a doctor to know you wouldn’t be able to function if you got emotionally involved with every patient and patient family. But when you have to have that conversation, there has to be some level of emotional involvement. Or at the very least, knowing that this is someone’s child. It is not their patient, it is their child.
Welcome to Difficult Conversations: Lessons I learned as an ICU physician with Dr Anthony Orsini. Dr. Orsini is a practicing physician and president and CEO of The Orsini Way. As a frequent keynote speaker and author, Dr Orsini has been training healthcare professionals and business leaders how to navigate through the most difficult dialogues. Each week, you will hear inspiring interviews with experts in their field who tell their story and provide practical advice on how to effectively communicate. Whether you are a doctor faced with giving a patient bad news, a business leader who wants to get the most out of his or her team members, or someone who just wants to learn to communicate better this is the podcast for you.
Dr. Anthony Orsini (1m 25s):
Well, Welcome to Difficult Conversations lessons I learned as an ICU physician. This is Dr Anthony Orsini, along with my co-host, Elizabeth Poret Christ. In over 30 years of practice in neonatology, I’ve had some memorable moments and I could honestly say that each one of my patients were very special. But there’s a handful of patients and families that no matter how many years will pass, I will simply never forget. Well, today we have the absolute pleasure of having as our guest, the mother of one of those patients that will forever be in my mind and in my heart. And in fact, it’s two patients because they were twins. Today our guest is Laura Diaz Freeland.
Dr. Anthony Orsini (2m 5s):
Laura’s twin daughters were born more than 17 weeks prematurely. That’s on the very cusp of viability. In fact, they were so premature that if they were born just a few years earlier, even at most of the hospitals in the United States, they would’ve had little or no chance of surviving. Today we are here to talk about her remarkable twin girls, their journey and Laura’s new amazing new book, Not What I Had In Mind, which chronicles their birth and the fight that followed in a season riddled with grief, fear, mental illness, and resentment. This memoir reveals the profound empathy we find for each other and ourselves in motherhood with a background in marketing and creative writing.
Dr. Anthony Orsini (2m 49s):
Laura’s work has been featured in Coffee and Crrumbs, her View from home, Elephant Journal, and one of her essays will be published in the spring edition of the Mother Egg Review. Her writing explores themes of motherhood, food, language, and peri viability, often drawing from her own experiences. Welcome, Laura, I just can’t wait to talk to you. It has been really amazing journey with you, and I just want to hear about your book and have you tell everybody’s story. So thank you so much for coming on this podcast today. I’m sure it’s gonna help a lot of people.
Laura Diaz Freeland (3m 22s):
Hello. Thank you so much for having me.
Dr. Anthony Orsini (3m 24s):
Yeah, this is one of the episodes that Liz and I have really been looking forward to, and I hear first of all that you just got back from a vacation with the girls, right?
Laura Diaz Freeland (3m 34s):
We did. We spent five weeks in Spain.
Liz Poret-Christ (3m 38s):
Dr. Anthony Orsini (3m 39s):
Spain. That must have been amazing.
Laura Diaz Freeland (3m 41s):
It was a lot of fun. It was very cool for them. ’cause I don’t know if you know this, their dominant language is Spanish still, so it was very world opening for them to be able to communicate with everyone confidently.
Liz Poret-Christ (3m 53s):
Dr. Anthony Orsini (3m 54s):
And at four years old to spend that kind of time in a different country, that’s just an amazing opportunity for them. So we’re here today to tell their story. We’re here today to tell your family story and your story and really to talk about the book, which is really about the story of Margot and Vivian. But before we talk about that, tell us a little bit about Laura Diaz Freeland before December of 2019, and then we’ll ask you to tell us a story about the girls.
Laura Diaz Freeland (4m 21s):
Okay. So I was newlywed, my husband and I had only been married not even a year when we found out we were pregnant with twins. And I was in the middle of a career change. So as you mentioned, I’d spent my entire career in marketing and I was just over it. I wanted to do something more fulfilling and that felt like I was making a bigger difference. So I was in graduate school and I was trying to figure things out as second career in my thirties, and that’s the long and short of it. I’ve always loved writing. So the book emerged from that and it was always a part of my marketing career, but I just wanted to do it in a different way.
Dr. Anthony Orsini (5m 1s):
And then we met in December of 2019, and that’s where this story starts that you write so wonderfully about in the book. So let’s just start from there. Let’s just tell the audience about what happened in December of 2019 and about your girls, and then move on from there.
Laura Diaz Freeland (5m 23s):
Sure. So I was 22 weeks and four days pregnant, and I’d been feeling very horrible for about 12 hours when my was like, I think you’re having contractions, you need to go to the hospital. So we live only five minutes from Winnie Palmer Hospital out here in Orlando. I should preface this with, I’m so naive. I knew nothing about pregnancy or labor or anything. I knew nothing. And I go to the hospital thinking there’s no way I could possibly be in labor. I’m only halfway through my pregnancy with twins. I think we’ve mentioned that they were twins.
Laura Diaz Freeland (6m 5s):
I don’t recall anyone saying you are in labor, active labor, but I knew something was wrong. As soon as people started cutting clothes off of me and putting IVs and shot steroids in very quickly after they did whatever initial exam and tests, and then they took me up to the antepartum floor in hopes that I would stay pregnant. And one of the most vivid scenes in the book for me, and it was actually the place where I started writing the book, even though it was very beginning, was my pregnancy was not extremely high risk. Obviously it was twins, but they were mono di.
Laura Diaz Freeland (6m 48s):
And so my ob, my regular OB was equipped to deal with mono di. If they had been mono mono, he would’ve referred me to an MFM immediately. But he had said, don don’t need to do that unless something changes. Well, something changed so quickly that there was no time for me to find a different MFM. So this hospital sent me an MFM and the MFM asks my husband and I to decide what we want to do. Do we want to intervene or not? And even to this day, knowing so much more than I knew then it’s such a wild choice to have to make, especially in a moment of complete crisis. And so we decided, no,
Dr. Anthony Orsini (7m 29s):
Let’s step back for a little bit Laura for the people who are nonmedical on here. So mono di means one placenta and two sacks, which is a little less dangerous than one sack. One sack is a lot more dangerous ’cause they kind of get tangled up in there. And as you said, they were extremely premature 22 in a few days, which in 2019 and even 2024 is at the very limits of what the babies could possibly survive. And that’s why the doctor kind of sounds like a little abruptly said, what do you wanna do?
Laura Diaz Freeland (8m 2s):
Right? I mean, he was kind. But it still was such a startling decision, especially because I didn’t know anything about this right, in my mind and I even said it to my mom, which I do not share in the book. I said to my mom, the babies are gonna come and they’re going to die because there was no world in which they could have lived. I’m a rational person, I’m a very logical person, and it doesn’t matter how hard I hoped. To me scientifically, when you look at the what to expect when you’re expecting app that tells you your baby has no lungs and no ears, how could they possibly have lived?
Laura Diaz Freeland (8m 45s):
So my husband and I decided to not intervene, but I wanted an epidural and in the shuffle to go to the labor and delivery floor to get the epidural. We never signed any paperwork. And then Vivian came very abruptly. I literally said, I’m gonna vomit and the baby’s gonna come out. And that’s exactly what happened. And it all happened at the same time. So not to be graphic, but also to be graphic, literally my mucus plug, the amniotic sac and Vivian all came out within 10 seconds, all at the same time.
Laura Diaz Freeland (9m 26s):
And NICU showed up very quickly. There happened to be a neonatal nurse in the room next door because it happened so quickly. NICU wasn’t there already. And she was there in a second and started bagging Vivian, which is very profound to me now because then I didn’t know what was going on and I didn’t understand the consequences of anything. But took the neonatologist around three minutes to get from NICU to labor and delivery. They’re four now. My kids are four. Now, I wonder would’ve happened if this nurse Tricia hadn’t been next door and she hadn’t done what she did, which I would find out much later.
Laura Diaz Freeland (10m 6s):
It was the first time she had ever done that, but it’s very profound now. But when the neonatologist arrived, he asked me, what do you want me to do? And in that moment, I changed my mind and I told him, you have to save her. So that was the start of our journey. My labor actually stopped. And so baby B, even though the force with which baby A came out had ruptured B b’s sac, my labor stopped and Margot stayed in for a little bit longer, and I had an emergency C-section two days later because her heart rate was dropping. But that is the beginning of the 224 days we spent in neonatal intensive care.
Dr. Anthony Orsini (10m 50s):
Now, to put this in context and how far modern medicine has come, when I was a medical student, many more years than I’d like to admit, but I’d say in 86, 87, and we’re doing classes, we were told which was true, that really any baby less than 28 weeks could not survive. And so now here we are 27 years later, whatever the math is with that, gee, that’s terrible. That’s actually 34 years later. But here we are. And over those years, for many, many years, the limits of viability, as we say, that babies less than 24 weeks couldn’t survive.
Dr. Anthony Orsini (11m 32s):
And then it was babies 23 weeks and more can survive. And each time we dropped the limits of where we thought a baby can survive. There were also a bunch of people who questioned the ethics, et cetera, of doing this because many of these babies do have prolonged hospital stays like your daughters and then don’t make it, don’t survive. Many of them have long-term effects developmentally. And so historically there over the last 10 years, maybe less than that, there have been only some neonatal intensive care units who have offered resuscitation in 22 weeks years. In Winnie Palmer Hospital, I was part of that first initial group, Winnie Palmer Hospital was one of those who had a special program for 22 weekers.
Dr. Anthony Orsini (12m 18s):
And we talk about intervention, serendipity, God intervention, et cetera. 99 out of a hundred hospitals that you would’ve been at that point would not have offered resuscitation. And so by the grace of God, you were at Winnie Palmer. but I also want to tell people too that it also would’ve been an extremely loving thing to do. And if you had said, I don’t want to, looking back now, that seems ridiculous, but many parents do make a decision what’s right for them. And that was your initial response, and then you changed your mind when you saw Vivian. but I wanted the audience to understand that we are really, really pushing the limits of science here with Vivian.
Dr. Anthony Orsini (12m 60s):
And that’s why your story is so amazing.
Laura Diaz Freeland (13m 3s):
Yeah. So I really, really want to be an advocate in this space, but it’s not necessarily an advocate for 22 weekers. It’s an advocate for choice. I got a choice, which at the time seems so daunting, but I realize now what a gift it was to get to be the one to make that choice whether I had chosen either way. But there are so many hospitals who don’t give parents a choice simply because they can’t. Right. So I understand that, that there are things that have to be in place, protocols and education and process that have to be in place for a 22 week or to even have a chance. But if a mother wants her child to have a chance, I feel very strongly that she should be given that option.
Laura Diaz Freeland (13m 48s):
But the only way that happens is if moms know who knows this, right? I didn’t know anything. And so it’s a strange space to be in where I have a heart for just educating parents on this line of viability and what it means. And I am not naive, right? I understand that we got two babies who both survived, who have no developmental delays and are dealing with very minimal lingering health issues. And that is not necessarily the norm, but it’s also not impossible. We aren’t the only ones.
Dr. Anthony Orsini (14m 26s):
I love the way you said that because the decision that you made with Vivian and Margot was a decision that was right for you and your family, and that someone who makes another decision is not necessarily a bad person. It’s the choice. And part of that choice is knowledge, because a good, a knowledgeable patient is a good patient. And knowing things like, okay, if I am in 22 week premature labor, where do I wanna be? If this happens, where do I wanna deliver? And so being knowledgeable is half the battle. The other battle is sometimes a little luck that you didn’t know. It’s like you said you were naive, but you just happened to be at Winnie. My sister-in-law 28 years ago was having a fourth baby in a little tiny community hospital in New Jersey that didn’t even have an OB in the middle of the night.
Dr. Anthony Orsini (15m 15s):
And she was admitted with some preterm labor and had something called accreta. And around eight, nine o’clock at night, she collapsed in the bathroom at 28 weeks and bled out basically. And there were no obs in the house, but by the grace of God, there was an OB who had privileges at that hospital who was there just visiting his neighbor. And the nurse saw him in the hallway and basically threw him in the operating room. And thank God my niece is fine at 28 weeks. And my sister-in-law actually got last rights, but then pulled through. So it sounds like a lot of this is sometimes things happen that we fully don’t understand. And Tricia was there, and then the doctor that came in on that little TBI team, as they call it there, came in and asked you, And, you said to help.
Dr. Anthony Orsini (16m 2s):
One of the things is interesting about your book, I guess maybe because I lived there and I was there, and I know who everyone is, is your nicknames for all the doctors and nurses, which I think is, by the way, very clever and also very accurate. I have say,
Liz Poret-Christ (16m 17s):
Are we allowed to reveal what your nickname is in the book?
Dr. Anthony Orsini (16m 20s):
Don’t know. People are guess tough to figure it out. It’s totally up to her. But so the doctor who came in to say, Vivian, you called the authentic doctor, right?
Laura Diaz Freeland (16m 29s):
The actual md.
Dr. Anthony Orsini (16m 30s):
Actual md, okay, tell me about that nickname. Where’d you get that
Laura Diaz Freeland (16m 32s):
From? So there are two things, right? Immediately before he comes into the room, I am telling the nurse, I need a real doctor. Like you’re not a doctor. I need a doctor because I’m gonna have a baby. And now I think the context for this is important. Now I’m much more gracious because I’m not about to have a child, but I was three centimeters dilated. My water hadn’t broken. She had reason to believe the baby was not going to come the way she did, right? But he was the actual MD who walked into the room immediately that I was requesting, right? But there is also an element of he is very authoritative.
Laura Diaz Freeland (17m 12s):
I could immediately tell even in that altered state of total chaos, that he was experienced, right? That he was a seasoned doctor and this was not the first absolutely insane birth he had dealt with. And so was a dual play on words, but also speaking to his professionalism and his state of being when he walked into that room.
Dr. Anthony Orsini (17m 37s):
And it’s very accurate. He is a friend of mine. He is a wonderful doctor. And so the description of that I think is dead on. Okay, so let’s go back. So now, Vivian, then Margot comes, and you’re admitted to the special unit for 22 weekers in Winnie Palmer Hospital in neonatal intensive care unit. And I’m reading your book, and for the people out there who haven’t read the book, this was not a smooth course by any stretch of imagination. One of the things that struck, struck me with you and your family having seen you almost every day is one how amazing it was that you, Jared, and your parents were there literally almost every day on rounds, which is wonderful, but also very hard to do.
Dr. Anthony Orsini (18m 22s):
Like at nine o’clock when we round it, you were there And, you were there day and night. And so that was amazing. And the support that you got from your mother and father was even noticeable and touching at the time. It was just fantastic. The other thing that struck me when I read the book, like Jaw dropping struck me is that I’m a pretty good reader in people and very good with body language that I got the sense that you and Jared were just totally made for this dress because you were so put together and always seemed like they’re handling this beautifully. And then you’re talking in the book about how you would go into the bathroom vomiting.
Dr. Anthony Orsini (19m 5s):
And so the amazing thing was, we as physicians, we don’t know what’s going on inside, but that just struck me. I’m like, holy crap, this was going on and I didn’t know. Now I wasn’t as close to you as some of the other doctors. The topic of this podcast as Difficult Conversations, tell us about some of those really Difficult Conversations that you had in the beginning, maybe with Jared, with the doctors, with the nurses, and then let’s go into all the complications that they went through.
Laura Diaz Freeland (19m 35s):
So at the very beginning, I was certain that the girls were going to die. I had no hope at in the first two weeks of their lives. However, I did this to them. I made this decision that I wanted to try. And so there was this responsibility on my part to be there, although it was very emotionally detached. I think my husband and my parents have had that time. They truly believed in impossible things. So it wasn’t that they know it was impossible.
Laura Diaz Freeland (20m 15s):
They believed in impossible things. They had great, great faith, and I couldn’t get there. And so I very much emotionally detached and tried not to love my daughters because I was so sure they were going to die. So I think that’s an important part of those initial two weeks looked like I had it together because I wasn’t hysterical, but it was a total emotional detachment. I think the conversations in the beginning, it was very much wait and see, the conversations got more difficult. I wanna say it was day seven and day nine of life, right?
Laura Diaz Freeland (20m 55s):
Because the difference between the two that they, we suspected a perf and we had to decide again, do you want intervention or not.
Dr. Anthony Orsini (21m 7s):
An intestinal perforation for the people out there, which is common for premature babies,
Laura Diaz Freeland (21m 11s):
Both of them on the same day. And I stayed home as much as possible, right? I was recovering from a C-section. I didn’t wanna love my kids. I was home and my poor husband was dealing with these Difficult Conversations, and he tells me on the phone, this is what they think they placed drains, right? So we said yes to the first thing because it was drains and it wasn’t we opening them up and then the drains didn’t work. And it was, do we want sign consent for them to go to surgery? And my husband asked the neonatologist, the real Arizona Robbins, he said, could they die?
Laura Diaz Freeland (21m 51s):
And all she said was, yes. I wasn’t there for that conversation. But in my mind, that was the first really difficult conversation because it was a hard question to ask. We didn’t really want to know. We had to know, but we didn’t want to know. And it was a crappy question to have to answer, but there was only one answer, right? And so that in my mind, was the first really hard conversation and we decided to move forward anyway. And it just was a trajectory of a thousand more Difficult Conversations, more so on the end of the physicians, right?
Laura Diaz Freeland (22m 34s):
Because after that happened and the girls both survived the ex lap, we were like, well, they’re trying to live. So now like our job is to make the decisions that give them the most opportunity of doing that, right? That’s the decision that my family came to. I understood, I think maybe more so than my husband, that there is a spectrum between life and death. These decisions had implications, and I was prepared to deal with whatever they were, right? Understood. I was not naive to the fact that we could be facing a lifetime of neurological issues. Of GI issues. I got it. And I was just like, well, this is where we are. We’ve made this decision.
Laura Diaz Freeland (23m 14s):
They’re trying to live. Let’s be their parents and support them in that. But the number of times a neonatologist had to come to me and essentially tell me, this is really bad. I can’t tell you innumerable. It’s innumerable. We had sepsis, we had bowel perforation, we had the bowel obstruction. Margo had aspergillus. That was like the worst case of aspergillus the hospital had ever seen.
Dr. Anthony Orsini (23m 42s):
Laura Diaz Freeland (23m 43s):
Then there was unexplained bowel issue and infection after infection, and then Margot coded, which is, I knew I was going to get choked up talking this, but she was dead for a minute. And Dr. Orsini was the doctor who ran her code. And afterwards, you and I wanna say the possibility doctor as well had to have a conversation that we don’t know what this means, right? We don’t know what her brain is gonna look like after this. I feel like up until discharge, every conversation was difficult. And, when I mean up until discharge, I mean, right until discharge.
Laura Diaz Freeland (24m 25s):
The dietician who discharged Margot told me, I don’t think we can discharge her the day she was supposed to be discharged because of her feeding situation and her weight gain. So yes, to summarize the Difficult Conversations, they were all difficult. I think more so for me as the patient’s parent, I felt like the patient, it was difficult to hear, but I know on this end of it, really see how difficult those conversations were to have. I feel like the longer we were there, the more difficult it is because at the beginning, you’re talking to a parent whose child has been alive for a day, but at the end you’re talking to a parent whose child has been alive for eight months.
Laura Diaz Freeland (25m 7s):
I knew my kid at that point. I loved her at that point. So it only became more difficult. I think
Dr. Anthony Orsini (25m 14s):
All those Difficult Conversations, which we talk about, and Liz and I have spent so many years training doctors and helping them navigate those conversations. Any advice that you can give to the providers, to the doctors and nurses when they’re having those Difficult Conversations with parents to help them with that? And any advice that you can give to parents who are hearing it through your massive experience now.
Laura Diaz Freeland (25m 41s):
So I feel very fortunate because of all of the really hard conversations that we had in those 224 days, the only one that I was really like, oh, this should have been done better, was the one the MFM had with me about having to decide and all of the things that could go wrong. And reflecting back on it now, it was really because I understood so little that the conversation was so challenging, not because his delivery was not good.
Laura Diaz Freeland (26m 21s):
I honestly barely remember how he said it. I kind of remember what he said. But it seems impossible, right? To have a conversation with someone who is literally in labor halfway through her pregnancy about something so complicated. Which is why my advice to patients, to women is even if you think something is never gonna happen to you, be informed. Because if I had been a little bit more informed, the conversation may have been a little bit smoother. But other than that, I feel very fortunate to have really built relationships with our physicians to where all of the conversations, even the very hardest ones, felt like they were coming from a place of compassion.
Laura Diaz Freeland (27m 6s):
And that really is the only possible advice that I could give to physicians is just remember that this is somebody’s baby, right? I understand very much the need to step back and see a baby as a patient for your mental health as a physician, you cannot get emotionally involved in every case. I know you wouldn’t be able to function. I don’t have to be a doctor to know you wouldn’t be able to function if you got emotionally involved with every patient family. But when you have to have that conversation, there has to be some level of emotional involvement, or at least knowing like this is someone’s child.
Laura Diaz Freeland (27m 47s):
It is not their patient, it is their child.
Dr. Anthony Orsini (27m 51s):
Laura Diaz Freeland (27m 52s):
I had somebody tell me this recently was a PA, the surgery PA, Winnie Palmer read my book and we went to see them every year. We go and we celebrate the anniversary of their ex lap because it was like this huge success. So we go see the surgery team and we take them a big gift. And so in December, we went and the PA said, I was changing Margot’s, dressing and you were holding her head and singing to her. And I was just trying to get onto the next baby and the next wound And. in that moment, it was so sobering because I was like, oh my God, this is someone’s child. I mean, it was profound for her, but also for me in understanding like I feel like don’t have a lot to offer.
Laura Diaz Freeland (28m 33s):
Somebody who went to medical school and has been treating babies for decades and decades, but I can offer that. And then as a patient or a parent, it is hard work, right? It is hard work. And the best advice I can give is to be as informed as possible. I know it’s overwhelming. I know that it sucks. I know that you wanna stick your head in the sand, but if you patient in the kind of situation we were in, who chooses to be uninformed is an impossible patient to talk to, right? Because you guys can do your very best. I mean, the cardiologist who placed the piccolos to occlude the twins PDAs, he drew a diagram of the heart and showed me where they were going to place it.
Laura Diaz Freeland (29m 18s):
That’s a lot of effort, right? For a physician to make, to help me understand. But it’s also just my job as a patient to understand that as much as I could, and I understand we all have different levels of understanding when it comes to this, but that’s the only way to be an active participant as a patient in these Difficult Conversations. And that requires you to ask questions. So it does not require you to go on a Google search because that’s just not a, it’s not a safe place to be under those circumstances.
Dr. Anthony Orsini (29m 51s):
Laura Diaz Freeland (29m 52s):
But you admitting your own ignorance is really hard. But if you can say like, how long are the intestines? What are the implications? She loses 24 centimeters of this. What does this mean? How long are they? Will it grow back? You can ask those questions and then it helps you have a better understanding and move forward in a more productive way in those conversations.
Liz Poret-Christ (30m 14s):
Well, I’ve been dying to ask you this question. The whole past 33 minutes we’ve been talking. So about 23 years ago, almost to the day I went into preterm labor with my twins, and they were at just a little bit before 27 weeks. And when I was in the hospital, something that struck me so strange, and now doing what Dr. Orsini and I do, I still go back to that moment when I was in labor. I had no idea. Also very naive. Went to the doctor for my routine checkup and he’s like, Liz, we need to go to the hospital. I’m like, why? Why do we need to go to the hospital? He goes, ’cause you’re in labor. I was like, what? What are you like?
Liz Poret-Christ (30m 54s):
So clueless, so stupid. My husband was on a business trip. I said, can I drive myself? He’s like, no, you can’t drive yourself. So I walk into the hospital all by myself and all everyone keeps saying to me is, you can’t have these babies. You can’t have these babies yet. And I’m thinking to myself, is this actually my choice? Why is everyone putting this on me? How am I supposed to control this? So in the world of Difficult Conversations, I’ve learned that these Difficult, Conversations are not transactional. They’re interaction. So how come nobody said, we’re going to do everything we can to make sure that you don’t deliver these babies yet and not put it on me as if it was my responsibility.
Liz Poret-Christ (31m 39s):
So I guess my question for you is, did you feel in those moments that you had a team helping you make these decisions? Or did you feel like you were making these decisions alone? Because I felt like when I was in the hospital, everyone kept saying, you need to do this, you need to do that. And guess what? Those babies had a mind of their own. Nothing’s changed. but I didn’t really have a lot of say or a lot of control as to what was going on.
Laura Diaz Freeland (32m 3s):
So that first decision as to whether or not we wanted intervention, I felt super alone in making that decision and in that conversation. but I really feel like I was in such a unique position being at Winnie Palmer, where they have a team dedicated to 22 weekers because I very much felt like they were my team and they really, really wanted us to win. Like they wanted us to leave that hospital with our babies. And yet they still very much had their heads on their shoulders, right?
Laura Diaz Freeland (32m 44s):
Wasn’t Delusional desire where they were encouraging us to make decisions that didn’t make sense. I never felt pushed in one way or another, but I very, very much felt supported. And the other thing is, there were a couple of instances where I was more pessimistic than the physicians, right? So with Margot’s lungs, we could not get this kid off the ventilator. She was literally on the ventilator until five weeks before she went home. And I was like, why doesn’t this kid have a trach? Why are we not talking about a trach? She needs a trach or we’re never going home. And the possibility doctor pulled up her X-ray and he was like, this is why she doesn’t have a trach.
Laura Diaz Freeland (33m 28s):
Her lungs look really good. The reason she’s on a ventilator is not because of what her lungs look like, it’s because of other body systems having an impact. They’re weak lungs, right? They’re premature lungs. But he was just like, these are not the lungs of a baby who needs a trach. And I realized in conversations like that, they were grounded and they were also not just grounded in a way that benefited them because it would’ve been, I think, when I think of medical professionals that they’re going to look the worst situation and prepare you for the worst situation. So to have him fight with me that the outcome was going to be better than I thought it was gonna be, really makes you realize, okay, this is a team and it’s a team that’s rooting for me, and it’s people who know what they’re doing and it’s good that they’re grounding me.
Dr. Anthony Orsini (34m 23s):
And I can attest to that there. Winnie Palmer, I worked there for eight years. These are my friends, my former partners. I moved on about a year and a half ago. But it is a place of good people. And that’s where you come up with the great nicknames, the possibility Doctor’s dead on the real Arizona, I don’t know Grey’s Anatomy. So I’m not sure where you got that from. So, oh,
Laura Diaz Freeland (34m 44s):
It’s perfect. You have to watch one episode, probably the episode where
Dr. Anthony Orsini (34m 49s):
I’ve seen it before.
Laura Diaz Freeland (34m 50s):
But I mean she looks like her. She sounds like her. She’s smart like her. She’s empathetic her.
Liz Poret-Christ (34m 56s):
Does she wear roller skates like her?
Laura Diaz Freeland (34m 57s):
Well, if she did, like wouldn’t shock anybody.
Dr. Anthony Orsini (35m 0s):
What’s her name? The real Arizona Robbins?
Laura Diaz Freeland (35m 1s):
I call her the real Arizona Robins. Yeah.
Dr. Anthony Orsini (35m 4s):
Okay. And then there was a special nurse in your life that you gave a nickname to
Laura Diaz Freeland (35m 8s):
Dr. Anthony Orsini (35m 10s):
The Advocate. What other nicknames do you have?
Laura Diaz Freeland (35m 12s):
The Dr. Orsini’s nickname Spill it.
Dr. Anthony Orsini (35m 13s):
I guess we could say, you called me The Godfather,
Laura Diaz Freeland (35m 16s):
Which was this whole thing, right? Because at the time that we were there, you were not officially on the Tiny Baby team.
Dr. Anthony Orsini (35m 24s):
Yeah, I was originally on that and then I had left by the time he started. However,
Laura Diaz Freeland (35m 28s):
Two of the absolute worst moments of our NICU stay, Dr. Orsini was the doctor making the call. And so it was just special in a way. And also I at the time didn’t know that your whole thing is Difficult Conversations. So the warmth that you brought to like really hard places, right? To like, we just brought your kid back from the dead and we don’t know what’s gonna happen. Or like your child has sepsis, we don’t know what’s gonna happen. And it’s really bad. The warmth was so tangible, right? Because it wasn’t just like, oh, here’s the conversation, but you found ways to connect with us.
Laura Diaz Freeland (36m 11s):
I was born in New Jersey and both my parents went to college in New Jersey and like we have friends who went to Rutgers and like I remember all of these conversations, right? To find this connection so that it didn’t feel like some guy not on our team is gonna come in and make a call about our kid. He practices what he preaches. Yes,
Dr. Anthony Orsini (36m 33s):
Those are very kind words. I’ll tell you, you talked about Margot coding and remember that like it was yesterday, 27 years doing this. I’ve coded a lot of babies, but you can tell Jared what was special about this. don don’t know if I told you this story, is that of course it happened at night. Jared was there, you weren’t there and Margot coded and she had no tube in her and her heart rate was really zero. And I’m running this code trying to put the ET tube in, and Jared is literally standing behind me. I don’t know if you know this story, did I tell you? And he’s on the phone with you and I’m hearing him when his voice is cracking and he’s telling you what’s going on and they’re trying to bring her back.
Dr. Anthony Orsini (37m 13s):
And I’m putting the ET tube in and I’ve done hundreds and hundreds and hundreds of ET tubes. but I was just like, dear Mary, I’m praying to the Virgin I’m like, this poor guy’s crying behind me. Like, please, please let this go. Well, so I remember that because I was like, wow, that was stress. Having the father crying in your ear while you’re trying to tube. And so by the grace of God, everything worked out okay, but I remember that like it was yesterday.
Laura Diaz Freeland (37m 37s):
So I haven’t heard you tell that, but I know Jared was there.
Dr. Anthony Orsini (37m 42s):
It probably wasn’t, but it sounded like he was right in my ear.
Laura Diaz Freeland (37m 45s):
I feel I have to give my husband credit here because there are two. So you are not the first physician on our team to have said something like this to me. The possibility Doctor also one early on in the first two weeks, one morning walked in and Jared had his hands on the incubator and he was praying like desperate. And the possibility, doctor, I know his wife now, and she told me that he told her that day, oh my God, these babies better survive because I don’t wanna tell this family that they didn’t.
Liz Poret-Christ (38m 22s):
So you had everyone rooting for you. Yeah, everyone rooting for them.
Dr. Anthony Orsini (38m 25s):
It’s certainly a lot more pressure as we’re coming to an end. I gotta ask you one more nickname. And that’s the surgeon’s nickname, which I did not know he had big game.
Laura Diaz Freeland (38m 34s):
Well, she probably doesn’t. And so like this is the compared to the baby.
Dr. Anthony Orsini (38m 37s):
What was his nickname?
Laura Diaz Freeland (38m 40s):
Behemoth hands. But he probably didn’t, right? And so I chose this also. We like love him, right? We love him. It was the thing I remember from meeting him, my daughters weighed one pound. They were 11 and a half inches long. And then this guy, I mean he’s not a little dude, very tall. He’s like a big tall guy, very tall. I was like, how is this gonna work? Because the inside of them is even smaller than the outside of them. And you’re gonna take those hands and you’re gonna pull out what’s inside of them. It was something that struck me. I didn’t have as many interactions with him, right? So I couldn’t speak to his personality as much as I could to our neonatologist.
Laura Diaz Freeland (39m 24s):
I didn’t choose nicknames for everyone. but I chose nicknames for people who were very influential, right? Who touched my life specifically. Like without that surgeon, without Behemoth Hands, there would be no Vivian and Margot, right? Without a surgeon willing to do something as freaking absurd as cut open two one pound babies and take all of their guts out. More than once. More than once. So he needed a nickname and that was my impression of him.
Dr. Anthony Orsini (39m 53s):
It’s a great nickname. The book is great. Laura, I’ve been actually buying it and giving it. I give it to our nurse manager. And I think all neonatologists need to read it all nurses, providers, because I think it really informs us about a lot of the stuff that’s going on behind the scenes. Like I said, I had no clue that you were vomiting in the bathroom every time you heard bad news. So I think it’s important for people to read that it’s important for pregnant women to read it or women who have had premature babies. I think it’s entertaining, it’s informative. And I give it a five stars. I really, me too. Enjoyed it. Me too. It’s fantastic. By the way, we’ll put all the links up on the notes for the audience so they can buy the book. One last piece of advice that you can give to mothers who are right now listening and may be in premature labor or might in the future, have to have a difficult decision to make.
Dr. Anthony Orsini (40m 47s):
I think I know what you’re gonna say ’cause you kind of alluded to it, but I just want to know. There was one last thing you want to tell them
Laura Diaz Freeland (40m 53s):
To be informed as much as you can be. And I know I only get one thing, right? But to be gracious with yourself of where you are, it’s okay for you to only understand what you understand and it’s okay for you to hate everybody. And it’s okay you not to have it together and to throw up in the bathroom and to blow up your husband. That’s just where you are. So be informed and be okay with whatever you are not capable of. It will change.
Dr. Anthony Orsini (41m 24s):
That’s perfect. And I say that even on the physician side to listen to that. That you’re dealing with moms and dads who are not at their best. They’re irrational. And sometimes moms and dads may lash out at the staff or displace some of their anger. And as we say, if that’s what it helps you to yell at me, then whatever I can do to help you.
Laura Diaz Freeland (41m 43s):
All. I have to add a third thing though. Okay. I got it. Don’t yell at the staff. Your kids’ life is in their hands. Don’t yell at the staff.
Dr. Anthony Orsini (41m 53s):
Yeah, I agree. Well, this has been great. This is gonna be one of our longest podcasts and we probably can go on for another half hour. It is been fantastic, but I’m so excited for you. Margo and Vivian are four. That’s crazy. Crazy. ’cause it seems like it was yesterday. They’re both doing well. We’ll be going to kindergarten soon, maybe another year or two. So because
Laura Diaz Freeland (42m 11s):
Of the December birthday, they don’t start pre-K until next fall. But they think they’re in kindergarten. Yeah,
Dr. Anthony Orsini (42m 17s):
They think they’re already done with school. Yeah,
Laura Diaz Freeland (42m 20s):
They know everything.
Dr. Anthony Orsini (42m 21s):
Well, thank you so much Laura for being on this podcast. We really enjoyed it. It’s been fantastic. For those of you enjoyed this podcast, please hit subscribe. Download more than 90 episodes that we’ve had over the last few years, and this is gonna be one of the best ones. And we’ll put all the show notes and all the links to Laura’s information, her blogs, et cetera. In case you’re driving and, you can’t write it down right now. So Laura, thank you. It’s been great, Liz. It’s always fun to do this with you. We’ve always had a great time. Until next time.
Announcer (42m 50s):
If you enjoyed this podcast, please hit the subscribe button and leave a comment and review. To contact Dr. Orsini and his team or to suggest guests for future podcasts, visit us at The Orsini Way.com. The comments and opinions of the interviewer and guests on this podcast are their own and do not necessarily reflect the opinions and beliefs of their present and past employers or institutions.
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