When the Beginning Looks Different: The NICU Journey Part II

In this episode, we welcome back Tami Gaines, author of Preemie Parents and mother of micro-preemie twins born at 25 weeks, for Part Two of our conversation—this time focusing on life after the NICU. After months of monitors, medical rounds, and constant vigilance, going home can feel both joyful and overwhelming.

Tami shares candidly about the emotional shift that happens once the hospital safety net is gone: navigating follow-up appointments, managing ongoing medical needs, coping with anxiety, and redefining “normal” as a family. We explore the invisible weight many parents carry after discharge—the hypervigilance, the lingering trauma, and the pressure to simply feel grateful—alongside the profound resilience that continues to grow in this new chapter.

Together, we discuss how families can build support, care for their own mental and spiritual health, and find steadiness in the uncertainty that can follow a NICU stay. Tami’s work has been featured in the New York Daily News, New Jersey News 12, and on dozens of podcasts and blogs, where she continues to offer hope and connection to families navigating life beyond the NICU.

Transcript

Tami Gaines: 0:00

He had two heart surgeries at that point. They're like, we just don't see a path forward. I was like, Okay, if that's the case, I want to take him outside. They were like, what if he is as bad as you say he is? And he was pretty bad. I want to take him outside. This kid has never had this sun on his face. He's been living in like this room for nine months. That's like being in jail. I don't care what it takes. I want him to go outside as soon as possible.

Lana Manikowski: 0:33

Welcome to perinatal and reproductive perspectives. This is a podcast where we empower birthing individuals, partners and health professionals with evidence based insights, holistic strategies and relatable stories. Hosted by a health care expert, this podcast fosters understanding equity and growth in perinatal and reproductive health. Here's your host, Becky Morrison gleed.

Rebecca Gleed: 1:02

You welcome back to another episode, perinatal and reproductive perspectives. We are back for part two with Tammy Gaines, who is mom, first, a business strategist and an entrepreneur. Welcome back to the show.

Tami Gaines: 1:20

Thank you. Thanks for having me back. I'm excited to be here.

Rebecca Gleed: 1:23

Yeah, likewise, we really got into the weeds around your NICU experience, kind of the bumpy pregnancy and postpartum, and now we are revisiting the discharge from the rehab center with your son, and so take us back, maybe give a little bit of Cliff Notes for someone who may just be listening to your episode without part one. Yeah.

Tami Gaines: 1:49

So the very short story is that I was married for 12 years, became unexpectedly pregnant with twins. I already had two beautiful kids, and we had the space and we had the house and we had money, it was like no reason not to have them. My then husband gave me an ultimatum. He said that I could have him or I could have the twins, but I couldn't have both, so I chose the twins. That was like a two second decision, and that began my journey of a lifetime. Like in five months, I was going through a nasty divorce, I ended up being placed on bed rest in the hospital for five weeks trying to stay pregnant, and at 25 weeks, I had an emergency C section. The twins were born weighing one pound, 12 ounces, each with a very poor prognosis of living, and that began my NICU journey. So for my daughter, that journey lasted four months, and that was an incredible roller coaster. But my son spent nine months in the NICU, and then he outgrew the NICU, basically, and they moved him to the PICU, the pediatric pediatric intensive care unit. He was there for four months, maybe five, and then I just decided I wanted to bring him home, like they told me, they again. He had a very poor prognosis, and I basically said, if he's not going to make it, he's not going to make it at home, not in a hospital. So they moved him to rehab in order to get his ventilator settings down. So he was, he had a trach. He was on a ventilator, oxygen, dependent on dozens of meds. It was a lot. So I they were just trying to get his vent settings down so I could bring them home safely. Yeah, I remember that day came when they said, Listen, I think you could take them home on Thursday. This was, like, on a Tuesday, and I just for all the strength that I portrayed and everything I felt like inside, I completely panicked. And I was like, what if something happens? Well, the plan was that something might happen, right? So I was caught up in my own what I want. It was freaking me out, but yeah, I got it together. I sat with the director of the rehab. She was awesome, and she talked me off the ledge, and we just had a real chat about life, and what does life mean? Do you remember anything? Well, yeah, I remember specifically she said, What's the matter? Why are you freaking out? She's and by the way, they give you a test before you take them home. So I had a week long test on every single bit of his care, medically and otherwise. So I passed the test. So that was the first thing she said. She was like, you passed the test. You're ready? And I said, I'm freaking out. Yeah, of course. She said, Well, let's get to the root of that, like, what that's about. And she told me that I've been living, which is true for the last 18 months, from a place of profound like, hope and faith, that he was going to be okay, but always with one foot in that place of like, maybe he won't be okay, yeah. And I was also living. As an advocate and a caregiver. I was his mom entitled, but you just, I just had a whole different role. So she was like, now it's time to just be a mom. You still have to advocate yourself to take care of him, but at the end of the day, this is what you were hoping for, for him to come home.

Rebecca Gleed: 5:19

Yeah, I want to dig into that if you're open to because I hear this a lot from some of the moms that I work with, is this role adjustment of going from the NICU to then your role as as his mom does, change a bit bringing him home. What was that like for you? What advice would you give other moms going through that? And then the other piece that I want to make sure to ask is outgrowing the NICU. This does happen, and we don't talk about it often, but if you could also talk about that a little bit,

Tami Gaines: 5:57

so I'll start with your second question, outgrowing the NICU they gave me like when he was seven months old, he was like the biggest kid in the NICU, and part of that was medically he he was carrying a lot of weight because he had a bad heart, so he was enormous. And that was sort of the joke. He was like Godzilla in the NICU. So they told me at seven months they wanted to move him, and I completely panicked, because I knew all the doctors, I knew all the nurses, I knew the routine. I knew the other families that were there. Because I think I mentioned like we were in an open unit. There was no private rooms. Everything was like done communally. So the thought of them moving him to pick you in a room by ourselves, basically, with a whole new set of doctors and a whole new set of nurses, was way too much for me. It was just I was, by the way, still going through a divorce. I had his twin at home who was on oxygen and on monitors. I had two other kids at home. It was, I was like, I can't you got to give me some time. But by the time he turned nine months, they were phasing the people from the PICU coming down to the NICU to learn about Trey and to meet with me. But it came a time I would have kept them there forever, but it came a time they were like, we don't even have, like, the medical equipment for his size, right? You know what? I mean, he's like, almost like a little toddler at this point. Well, not a toddler. He was nine months. So, yeah, nobody talks about that, but it was hard. But I had one benefit, was that they actually moved another baby who had been there the whole time, moved them also to the PICU, like, three days later. So we ended up being roommates, which was nice. Yeah, that was a sad ending, though. It was sad. We gave each other, like so much comfort for like, three months, and then her son got really sick, and he passed. So that was sad. I was so sad for her, but it's also reality, right?

Rebecca Gleed: 8:05

Becky, yeah, yes, babies are lost. Yes, that was

Tami Gaines: 8:11

a bucket of cold water, like a gentle reminder of, like, reality,

Rebecca Gleed: 8:17

yeah, the role that was transitioning when you're playing, you're his mother that's in the NICU, but then, and then the PICU, and then rehab, but then you're bringing him home, and your role does change. Yes, you pass the test and right. It's completely different than being in a hospital setting.

Tami Gaines: 8:39

I will be honest with you, I think I played this wrong. I spent when he came home. I was still in charge of his care. I became like a nurse. I had nursing for him for like 12 hours a day. Those other 12 hours I was on duty. Like, if the trait came out, we're calling 911, I was like, giving him his meds, and what I should have done was, in the quiet spaces of downtime, I should have focused on just being his mom, like I took him for walks, which he loves, like he loved being outside. So I get the jogger, put the ventilator on it, like it was a whole I wasn't just pushing like the jogger, I was pushing like, 100 pounds, like, through the park. But even that in my head, was more about like, oh, we should get some fresh air. Like, we should get outside. It wasn't like, let me go hang with my son in the park. So it wasn't until he got more stable that I felt more comfortable leaning into like, Okay, let me just be a mom. And, oh, by the way, you know, he eats through G tube, so that was always every four hours I was feeding him. So it's hard to just like, compartmentalize, because you're still taking care of all the medical stuff, and I was taking care of other kids. It's easy for me to Mother them, even Bria, who was on monitors, because that's, that's the role I'd been for the longest time. But like I said, if I had a do over, I would have figured out, like, gaps of time where I could have just taken him and been like a mom, be very intentionally, like playing and whatnot, instead of just trying to keep him alive, which is really what I did for the after we got home, I'd say it took me, I would say, like, two years before I was like, okay, he's not going anywhere. Like, we're out of the woods, and now I'm going to start to, like, adjust even little things like sitting and reading him a book. Yeah.

Rebecca Gleed: 10:48

Well, I think when you go through something like this, your brain does change this, your endocrine system, your limbic system, can literally be on fire because, you know, it's a matter of survival, and this instinctual process takes over. So then I think you're speaking to how do you gently, kind of rewire your thinking that it's okay now you can relax, or you can, you know, just sit and enjoy a book without feeling like something catastrophic is going to happen.

Tami Gaines: 11:19

Yeah, you know what else? Becky, I'll tell you. I think that shift also happened much easier when he ended up going to school okay, because he was home like he was. All of his therapies were happening at home. He had a teacher coming to the house because he was like, nobody would take him. He was just too sick. But when we finally got to that point where he we found a program temporarily, but we found a program. I was like, Whoa, I have like five hours to myself. There's no bells dinging, there's no alarms going off. I'm not preparing medicine. That was when I could finally, I think, start to lean into like you are, not his caretaker. Your only job now is to be his mom.

Rebecca Gleed: 12:05

So, yeah, how did you cope with I mean, I just think your day to day, running a household, other children, you work like, how did you how did you cope?

Tami Gaines: 12:18

So I've at this point, I'd always work for myself. So the first thing is, I literally stopped working. It was just too much. And before the twins came, I had a podcast like I put that on hold. I literally just cleared my plate of all the Go, go, go stuff that, when I look back, it had very little meaning in the grand scheme of my life. So that was helpful. I leaned on a very small handful of people. Like, when you go through this experience, and I talk about it in my book, I talk about your world, it becomes very small, yeah, like everybody's there at the beginning. Everybody's like, people were dropping off food. They were so generous and so lovely and checking in and texting and what's going on. But when your journey lasts longer than a couple of months, people start to go back to their own lives. So your world becomes very small very quickly. But I am grateful for the I had a few, like I said, a few people that I leaned on. I tried not to pour too much into any one of them for their own like, sort of mental health. I'm big into journaling. And almost every night, like when the weather was nice, I would just go sit in the backyard, on my patio. Yeah, we lived at that point next to a park, so the night sounds were amazing. So I would just sit out. I would have a glass of wine and sit on the patio and try and celebrate whatever little win I could that day, and then talk myself off the ledge about other stuff that might be going on.

Rebecca Gleed: 13:56

I'm hearing journaling, Echo therapy, being outside the sensory the sounds, and then celebrating the winds. I'd be curious, how did you approach journaling? Was there any anything that you found helpful?

Tami Gaines: 14:10

Or, yeah, if you're new, so I've been journaling since I was 11, and I just turned 58 so that's a lot of experience journaling. Yeah, if you're new to it, I would just say, don't like, force yourself to journal. Don't force yourself to write. I think you're you become like, in the mood. So even now, I don't like, I don't journal every day, but when I do journal, it's like five or six or seven pages, like it just pours out of me and I don't put any filter on it. If I start to ramble, I don't really care. That's me releasing what's inside of me. It's my subconscious coming out on paper. And I would also remind yourself that no one's ever going to read this. Yeah. Yeah, right. So it's private, and so you could be honest, it's your own safe space. That's why I love journaling. No one's gonna judge me. There's no right or wrong way to do it. It's a stream of consciousness, or it's very intentional. So the I have been journaling for the last couple of days because I've been working on my affirmations and my intentions and my goals for 2026 so I have been journaling for the last like two weeks every day from a different vantage point of my goals and what do I want to let go of this year? So you can also be sort of topical about your journaling, but generally, I think just, just start writing. Even if your first entry is three sentences, just start.

Rebecca Gleed: 15:50

I like this. It sounds like there's two approaches that you're highlighting. One is the stream of consciousness, and then one, you can be topical or intentional about what you want to focus on. And I love that we're catching you. After like, two days of journaling, you're like, Oh, this is so good. Tammy, yeah. But I always encourage folks to have, like, make yourself have a minimum time of at least, let's say 3040, minutes. Because what I've found, and I don't know if you found this too, is the deeper stuff comes after that, like 15 minute mark, when you're you're in the flow, and it can really help you get to that stream of consciousness, as opposed to just kind of the top bullet points,

Tami Gaines: 16:29

absolutely, you know, I was the other thing. I didn't finish yet, but I was journaling about all the loss that I've had over the last two years. You know, my dad, my own, both of my uncles, my cousin, friends, like, it's just been non stop for so long. And I was like, I need to unload this. So I do have a therapist. I talked to her, but I really actually needed to go deep with myself so I could move past it before 2026 girlfriend, I journaled no joke for four hours. Oh so good. I think I got up once to go to the bathroom and once to get like, another cup of water. And I was like, whoa. I am in a serious flow state right now. And everything was coming out, good stuff and bad stuff, right? Great memories, unresolved pain. So I also encourage you to your point, like, once you get into the groove, once you start trusting yourself about journaling, let it all go. Because I think when you've been doing it for a long time, you have those bouts, like, I've been on the beach and I've written for three hours. Yeah, right. And so this was the other night, sitting by the Christmas tree. This was just what came to me, is like, I want to, I want to start writing about some of this, like, in a deep way. So I didn't cut it off. I My phone was ringing. I turned my phone off. I turned everything off. And just like, focused on letting myself release,

Rebecca Gleed: 18:01

yeah, letting yourself release. And that might be a message to underscore here for NICU parents. NICU moms, pick you parents. Pick you moms, of what you're going through, you can also give yourself permission to have some healthy outlets, to have forms of release. And maybe that's a segue back into more wisdom that you've learned, or as you reflect back on that time period, what else stands out? What else do we need to share with parents?

Tami Gaines: 18:32

Today, I want to add one thing before we get off journaling. So when I was going through the NICU experience, I had two notebooks. One was what I call my medical notebook, and I kept all my notes every day about my twins, their height, their weight, my conversations with the doctors like I would take that with me, by the way, when I had conversations with the doctors, just a tip, I always had a nurse there, because when you get emotional, you don't hear everything and you might not understand something. So that's just a sidebar. Tip is always have somebody else there when you're having those conversations. But one was very specifically medical journaling, right? Yeah, I separated that from my own personal journal. And that's really important. I never, I never combined the two, and in my personal journal is where I wrote about, like, what pissed me off that day and what I'm grateful for and what I'm scared about. So I recommend, if you're in the NICU right now, you know, get to that would help Becky back to your point about going from being a caretaker to being a mom, that was a constant reminder that I actually have a much higher role. Yeah, that's not like tactical.

Rebecca Gleed: 19:53

That is such good advice. I hear this especially when there's a new diagnosis or new information or something i. Which you can't it goes in one ear and out the other. And so to either have someone there with you or some type of a journal that is so brilliant,

Tami Gaines: 20:09

yeah, and I learned that everything that I learned and that I talk about in my book is all from my lived experience. So when I looked back at my journal entry, and I had like, trays height and weight and his bilirubin was a problem. I was like, why is that in my, like, Heart Journal, so that's when I separate it. Yeah, I think the other piece of advice, and this is real, and it's going to be hard, but I know that you can appreciate this is in the middle of all the chaos and all the bad news and all the good news. I think it's really important to remember that your doctors and your nurses and the PAs and the therapists, they're all regular people with regular lives and their own level of stress. So I always made sure to remind myself that when I was going to get mad about something or a decision I didn't agree with, and I saw them as humans, not just a person behind a white jacket. And that helped me with we built relationships, right? They could tell when I was upset, when something was bothering me. I could tell when they were like, off, and I'd say, like, what's going on? I was going to talk to you about this later, but we got back these blood test results, and I have some concerns. So there this is a human telling me that. So I think we tend to put them up on pedestals, which I've never done, but I do think it's important to remember the humanity. I don't know if you want to speak to that at all, in your experience,

Rebecca Gleed: 21:51

I think you hit the nail on the head, and that's why I have a commitment. I don't know if you've seen kind of the flow of the podcast, but it's I try to do every other episode like a human experience, and then a provider experience, and nine times out of 10, the provider shares their personal story of what brought them into the perinatal space, or maybe they unexpectedly found themselves in a situation where they're like, Oh, I'm now going through infertility, or I'm in the NICU, and I never would have guessed that, or some type of oncology because of a reproductive health situation. And so I 100% agree we have to remember we were all humans sitting at the table together, holding hands, and remember, it's, it's, and that takes, I think, away this power dynamic, and takes away. Maybe we're not going to ask that third question, because we put them on a pedestal and we're afraid to take more of their time. But yes, I 100% agree, and I think that there's something to this experience of going being collaborative and being together as a provider and as a patient, or however you want to call those roles. There's, there's something to that.

Tami Gaines: 23:13

You know, I have two stories. One is like a tip wrapped up in a story, yeah, and the other one is like, or just a story that I love. Hopefully I'll get through it without crying. So the twins had some of the same doctors, and also different doctors, different nurses, different specialists, different everything. And I got to the point this is pretty early on. We were, like, two weeks in, and I realized that nobody was talking to each other. I was like, well, so and so just said this to me, and now you're telling me this. Have you talked to them? So the answer was no. So for the first time, apparently, in the NICU, I called a meeting of all of the providers in one room. Before the round started, I brought Dunkin Donuts and I brought coffee and I brought orange juice, and 17 of us sat there for the first time and actually talked about the continuum of care and what was going on and what the priorities were. And we decided to meet every single week, and the meetings were only like 15 minutes long, but it was, it gave me peace of mind, knowing that they were actually talking to each other. And if this one was recommending surgery, what did everybody else think? Like, how does that impact the rest of his care? So I would encourage people to take the lead. Like, when I talk about advocating, that's a little piece of advocating, like you're allowed to call the meeting. You don't have to wait for the social worker to set it up or for the family coordinator to set it up, call the meeting and leave it to the social worker to organize it. I just told her who I wanted in the meeting, the date, the time that was I'm not an event planner. I just don't want to ever. About it in the same room,

Rebecca Gleed: 25:02

but you're right, splintered care can we've got to have all the players at the table that can be so helpful. But you're right. Our medical system often is a splintered system, and gosh, to have everybody talking and collaborating can make a world of the difference.

Tami Gaines: 25:19

Convinced that's one of the things that saved his life, really is because they became, I mean, it was great for me, but for them, I think they also felt better about their decisions because they weren't making a decision just about his digestive system. It was about like the neurologist was there. You know what? I mean, his neonatologists were there. So, yeah, I think it takes courage, but once you do it, the first time, the outcome is so much more beneficial than the fear of actually doing it. So the other thing I know, tell me again, what you called it sitting outside and listening to the night sounds.

Rebecca Gleed: 25:58

Oh, Echo therapy. We know that two hours a day can make a world of a difference just by being outside, being in nature. So when I hear that, I'm like you, are so intuitive to at the end of the day, go sit outside, listen to the noises. And then there's that sensory piece with the auditory sounds of nature that you said you live by a park, and those sounds can be so therapeutic.

Tami Gaines: 26:22

Okay, so here's the story. Okay, when Trey, he was about eight months old and his heart was just not working properly. His they weren't able to get, like, his ventilator settings down like it was nothing but bad news. I had the talk in the conference room with the docs to say, like he had two heart surgeries at that point. They're like, we just don't see a path forward. I was like, Okay, if that's the case, I want to take him outside. They were like, what? So, picture this like my little boy is in an isolette. There are tubes everywhere. He's on a ventilator. He's on oxygen. They made me stop breastfeeding. The legal the lawyers, I think we talked about this in the hospital. Need to stop breastfeeding. So I caved on that one, but I decided to fall on my sword about this one Sure. And I said to Dr Mims, I have never asked you guys for anything. I haven't asked you for discharge dates. I haven't asked you to guarantee me anything at all. But I'm asking this if he is as bad as you say he is, and he was pretty bad, I want to take him outside. This kid has never had the sun on his face. He's never like felt the wind on his body. He's been living in like this room for nine months. That's like being in jail. I don't care what it takes. I want them to go outside as soon as possible. So they didn't say anything. I know what they were all thinking, like, This chick is batshit, like it will take, it's gonna take an act.

Rebecca Gleed: 28:15

We're moms. We're not bad. We're just moms.

Tami Gaines: 28:20

To get this kid outside is going to be a miracle. So every day is Trey going outside today, not today, every day. Finally, we're on like day six. It was a Friday afternoon. They had just just discharged a bunch of babies home, so it was really quiet. His regular people were there, and Dr Mims found me, and he's like, today's the day. I was like, Oh my God, what's the plan? And it was this beautiful fall day. I will never forget the leave. The color of the leaves was magnificent. There was that perfect, like fall breeze blowing. I'm in Jersey, so fall up here is and down there you're in DC, beautiful on the on the east coast. So I said, what's the plan? And he said, we're going to, very quietly. He said, I'm going to carry Trey, and we have three nurses that are going to carry his equipment. We we're going to detach as much as we can, like, his IV, and he needs oxygen, he needs the vent. We can't stay outside very long, but we're gonna do it stealth. And I loved it, because this was like mission, impossible. We went out a back door that never gets you into the parking lot, which was not beautiful, but they found, like a little piece of parking lot that nobody uses, and there was a bench there, and it was so great. Dr MIM sat down holding Trey, and he started crying, and then they all started crying, and then I started crying. And we were magic crying, just for like the sheer passive. Ability, the sheer amount of effort that went into giving Trey, like a taste of what it feels like to be outside of that room, best feeling ever, better than anything in my life. Yeah, and then, by the way, I think he got a second wind, because, of course, he stopped being so morbidly ill, and they moved him to like, two months later, they moved him to the PICU, after that whole gloom and doom of he's not gonna make it so sorry. That story gets me every time.

Rebecca Gleed: 30:37

No, there's no apology necessary. I was gonna just make space for people who aren't seeing this through video form, just listening audio, if they didn't pick up that you started to tear up there and just make space for like, what? Why do tears come up?

Tami Gaines: 30:53

The tears come up because Trey has always been an inspiration. I call them my little warrior. Like we knew Bria was gonna make it. We didn't know what her ultimate outcome was gonna be, but Trey was always like, touch and go. And every day that I walked into the NICU and he was there, I was like, Thank you for another day. And he he's a warrior. He's always done the impossible, and I asked the staff to do the impossible, and probably illegal, right? I mean, when I think back on it, like we'd walk this kid, like, right out the back door, yeah, sign any papers. Nobody was notified. Like, security didn't know. I didn't sign any papers, but they did the impossible for me, which makes me just, my heart is full of gratitude, and then trade in the impossible for everybody. Yeah, but he's 19 years old.

Unknown: 31:54

He's 19, so I think that all

Tami Gaines: 31:57

that, that story, that day, I believe, was a turning point in his life journey.

Rebecca Gleed: 32:03

Yeah, and you carried that ritual by sitting on your porch having that glass of wine of just being and the i We can never underestimate the power of being outside in nature. That's my personal belief, and research is finally catching up with that. But you're, I think you were on to something.

Tami Gaines: 32:20

I have a whole chapter in my book about trust, the power of nature. Every question you have is answered in nature somehow, if you just connect to it. So I think, yeah, I believe to this day that that was, like the turning point in Trey's life, like being outside they gave me 15 minutes. Yeah.

Rebecca Gleed: 32:41

Well, and maybe this is a nice segue to talk a little bit more about your book and where people can find it, and then maybe some last nuggets of wisdom as you reflect back, because, as you said, he's 19 now. What other advice would you give to parents and moms, and what else can they expect to read in your book?

Tami Gaines: 33:03

So I'm really proud of this book, mostly because I wrote it, because the doctors and nurses asked me to this wasn't some grand idea that I came up with. They just basically said, you've gone through this journey with one of the most peaceful approaches we've ever seen, wow. And Dr Mincy wrote the he wrote the forward to

Rebecca Gleed: 33:25

my book. Oh, we'll have to get him on.

Tami Gaines: 33:29

He's amazing. He is the best, by the way, world renowned neonatologist. Oh, wow. Okay, so, yes, I will make the intro. You have to have him on. But he's the one that said he's like, I think you should put it on paper. Whatever your magic is, whatever you've been practicing, whatever you've been doing, it can help other parents and other families. And that was enough inspiration for me to go write it. I wrote it in like, three days, I believe it, it just came out of me. And so it's called 26 ways to grow with your premature baby. And it's to the alphabet. There's 26 ways. Each is a letter of the alphabet. So A is advocate, B is be present, C is calendars, and so on and so on. So I talk about dealing with doctors. I talk about dealing with family, which people don't often talk about, but family is not always like the most supportive. I always say, whatever they were beforehand is what they're going to be now,

Unknown: 34:30

right, right?

Tami Gaines: 34:32

Which my cousin generally reminded me she was like, why are you expecting like, somebody different, right? So anyway, the book is on Amazon, and if you purchase a copy, there is a QR code in the back which leads to almost$1,000 in bonuses. And it's everything from I wrote a guide for fathers in the NICU. So that's part of the bonus, and not many people. People speak specifically to dads, but they have their own journey, and I know that because I talked to a bunch of dads, there's a whole preemie primer, which is all about like, finding peace during the journey. So yeah, you can grab a copy on Amazon. It's a great gift. I think everybody knows somebody who has had a baby in the NICU, or has one

Rebecca Gleed: 35:22

absolutely, or for NICU to maybe have it their NICU for as a resource for parents.

Tami Gaines: 35:28

Yes, I do have, I have a couple of hospitals that buy it and they give it to the families for free. So yeah, that's wonderful. So listen, in terms of, like, reflecting the last 19 years, I think the number one thing that I had to build a muscle for was letting go of expectations, like not having any expectations, which is hand in hand with being present and living in this particular moment right now. That was the hardest practice, because I'm very like, go, go, go, let's make a decision. What are we going to do? What's happening next? That completely changed my personality when it's like the surgery has been postponed because this happened, and whenever that heals itself, then we'll do that. So it's a new normal. And I would say that the quicker you realize that most of this is out of your control, the easier you're going to lean into this NICU journey and the post NICU journey, which is it's a roller coaster, because you're living in a world of uncertainty and chaos and building that muscle of, by the way, building your resilience muscle, and also building a muscle of, like I am living in this moment right now. I'm not going to think about tomorrow. I'm not going to think about yesterday. If you can learn it's like a some form of meditation. It feels like absolutely yes. So that so Leanna and I probably meditate unconsciously, but learning that practice as quickly as you can will make all of this so much easier. That's my biggest like takeaway over the last 19 years. By the way, I expected Trey to go to college, just like my other kids. And I found there's a few colleges in the country that have very small schools for kids with special needs. There's only, like 10 kids in the class. So I was holding out hope for that, for the last, I don't know, five years, six years, and I think middle of last year, they were like, Tammy, this is the best we're gonna get at a tray, yeah? Like he's not going to college. He's not gonna go to vo tech. So we gotta, I said, Okay, that was like a kick in the gut. But then I had to remember, like I should not have had that expectation. Practice what I preach beautiful.

Rebecca Gleed: 38:01

I think these are going to be takeaways for moms and tell everybody what the name of your book is.

Tami Gaines: 38:06

Again, it's called preemie parents. 26 ways to grow with your premature baby.

Rebecca Gleed: 38:12

Yeah. And where else can people find you?

Tami Gaines: 38:17

You could find us on our website, which is preemie parent book.com, I'm Tammy games on all the socials, T, A, M, I G, A, I N, E, S, and listen, I'm all I'm out there. I'm very available, and I'm happy to talk to anybody that wants to reach out, even if they just want to chat. And I told you, in January, we're gonna start doing the wine o'clock, yeah, which is an hour of like, bring your wine. Your complaint. You want a bitch, you want to some support. Like, one hour a month, we have an unscripted like, let's sit around and chat.

Rebecca Gleed: 38:56

I love that. Yeah, nothing like group therapy with a glass of wine, exactly. Well, thank you so much. This is such a gift to have you on for part two. And yeah, thanks again. Thank you.

Tami Gaines: 39:08

Thank you so much. Love being here.

Lana Manikowski: 39:13

If you would like to learn more about how we can help, visit our website at perinatal reproductive wellness.com, and while you are there, check out the latest edition of our book, employed motherhood. We also invite you to follow us on social media at employed motherhood. Finally, if you enjoyed listening to the show, please subscribe and rate it. Thank you. I'm.