When the Beginning Looks Different: The NICU Journey

In this episode, we’re joined by Tami Gaines, author of Preemie Parents and mother of micro-preemie twins born at 25 weeks. Drawing from her lived experience navigating the NICU, Tami speaks to the emotional and spiritual journey of NICU parenthood—the parts that often go unspoken and can feel invisible amid medical updates and uncertainty. Together, we explore how parents and caregivers can find meaning, resilience, and growth during an experience they never planned for. Tami’s work has been featured in the New York Daily News, New Jersey News 12, and on dozens of podcasts and blogs, offering hope and connection to families walking the NICU path.

Transcript

Unknown: 0:00

The labor started and then it stopped. They gave me Pitocin that didn't help, so I was minutes away from a C section, and I literally said to I had a midwife. I was like, can't you just reach in there and pull her out? Because my pelvic was tipped in a way that she didn't think she could figure it out on her own. So she was like, this is going to hurt. I was like, do it? 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: 0:57

Welcome everyone to another episode of perinatal and reproductive perspectives. We are here with Tammy Gaines, who is a mom of four, a business strategist, an author and an advocate for NICU parents. Welcome to the show.

Tami Gaines: 1:14

Thank you so much for having me. I'm thrilled to be here.

Rebecca Gleed: 1:17

I've been looking forward to this for the last several weeks, so you have quite the story. And this is a topic we're going to be focusing primarily on NICU parents, and this is something we haven't given a lot of light to. So I'm I'm really grateful to have you on the show today to shed some light and really accentuate the incredible work that you're doing. Let's go back to the beginning, if we can, and share your experience, the NICU anything that feels front and center that we can maybe take a deeper dive into. Yeah.

Unknown: 1:54

I mean, let me start with my story. Essentially, in a course of five months, my entire life detonated. So I was married for 12 years. I already had two beautiful children, and when I became unexpectedly pregnant with the twins, I told my then husband, and he gave me an ultimatum. He said I could have him or I could have the twins, but I couldn't have both. So honestly, that was a easy decision. I didn't like him that much, and we already had we had a giant house. We had money, like there was no reason not to have the twins. But what happened immediately after that is he we started a nasty divorce, and the stress of that like he immediately started living his single life. He moved up to the third floor and was out and doing his thing, and I was pregnant and trying to deal with the two kids at home. And the night that we told the children that we were getting divorced was the first night I went into pre term labor, and that was, like 16 weeks. It was, it was incredibly stressful, and it didn't go well. But anyway, I kept going into labor, and then my OB finally said, if you want to keep this pregnancy, you have got to be on bed rest, and not bed rest at home, because I was, you know, I was holding it down by myself. So she put me on hospitalized bed rest. She gave me 24 hours. It was like, it was like Goodfellas. She was like, I want you to go right now. I was like, I need 24 hours to take care of my affairs. Absolutely. And I did. My sister in law happened to become, it was girls weekend, so she was on her way here from California, so I'm like, change of plans. I'm being admitted tomorrow. And she was like, I'm coming anyway. So yeah, I did listen. I did what we

Rebecca Gleed: 3:51

heroes, by the way. Just to insert that like and quickly, that decision, you said it was an easy one of your husband or the pregnancy. Can you tell us why?

Unknown: 4:05

I mean being completely transparent. We had a most of our marriage was pretty bad. I had been looking for an exit ramp, and I feel like God has a great sense of humor, because I think if I had gotten pregnant with one, we'd still be together. But two was like, boom, that's it. We're not, I'm not handling two. So, yeah, you know what it I'm not gonna, I mean, I'm not gonna joke about it. It was very, very difficult, like the, well, listen, I come from a long line of people that stay married forever. I'm only the second person in my family you get divorced. So it was hard. And my first little bit on bed rest, I was trying to figure out, like, how we can come back together again, and how we can make this work. But listen, while I was on bed rest, it was a struggle to even see my kids. Friends that were at home, he wouldn't bring them to see me. So I was calling, like my cousin, and I was calling my friends to help do my daughter's hair and can somebody bring them to see me in the hospital. So I at some point, I realized, like, it's a wrap, like the fact that he won't even bring my kids to see me, and he told them I was on vacation. He never even told them I was in the hospital. So, yeah, I mean, I think I was like, a weekend, and I was like, that's a wrap. I need to embrace my new normal. I am officially a single mom. I have two at home. I have two in my belly. Then I'm hoping we'll stay there. But anyway, it I lasted for five weeks on bed rest and had an emergency C section at 25 weeks, I had a mass. I had a nasty infection, high fever, like everything wrong. And my doctor said to me, I'll never forget. She said, Tammy, we have to get the babies out of the soup. We got to get him out of this. Yeah. I was like, what does that mean? Because I was like, passed out for part of the evening, and she was like, we're taking you right now to surgery to do a C section. She said we called your husband. I was like, why? My cousin's supposed to be my birth partner? They were like, he's already on the way. So that was a whole nother, like level of weirdness to a situation that was already bizarre.

Rebecca Gleed: 6:29

May weirdness, was there any form of betrayal experienced, or any other nuance in terms of emotions there?

Unknown: 6:40

He didn't cheat. I'm assuming you mean about my my

Rebecca Gleed: 6:44

ex rose, that actually is thinking the medical system you had, you know, part of this is, you know, honoring the wishes of the birthing individual. And if you said cousin, and they didn't call your cousin, was there any form of betrayal from the medical system that you felt

Unknown: 7:01

slowly if I wasn't so, you know, I was on drugs. They were prepping me for surgery, and when he walked in, I said, Where is my cousin? That is who you're supposed to call. She was on call. She knew I was in the hospital. She came to see me like the day before. So, yeah, it was a sense of betrayal, and on so many levels, it wasn't the experience that I was looking for that didn't help, like having an emergency C section was not on my radar, having him be there for it that was not helpful at all. It added a level of stress. And I'm happy that I was on a bunch of drugs because I couldn't even process the fact that he was sitting there, like the guy that didn't want the twins. Yep. Yeah, it was

Rebecca Gleed: 7:51

bizarro world, yeah. So you have this Assyrian birth that's an emergency. Then what? What do you remember?

Unknown: 8:01

So what I remember is not hearing anything. Like, I remember, you know, they put like a sheet up, and they said, okay, like we have the first one. It's a girl. They showed her to me for like three seconds and whisked her away. And then Trey came out, my son, and they didn't I didn't even get a chance to see him. They just took him immediately. They had to resuscitate him at birth, and then they just took him straight to the NICU. I didn't get a chance to see them. I was really sick. I had some sepsis. They had infectious disease coming. They couldn't figure out what was wrong with me, so they took me back to after they, you know, sewed me up, they took me back to my room, and I stayed there for a week. I didn't see the twins until the end of that week, when I was finally without a fever and not contagious. But I will tell you also which is worth mentioning. The day after the twins were born, my grandmother died. Oh, my and she was my role model. She was just my role model. So in that five months that I'm talking about, both of my grandmothers died. One died right after I found out I was pregnant and we were going to start, you know, do the divorce, then the other one died right after the twins were born, it was incredible. It was the most transformative five months of my life. And I'm grateful for everything that happened, but you just never know like with my life, it was like pulling a string from a ball of yarn, and everything started to unravel, which is why I said, in five months, my life literally blew up.

Rebecca Gleed: 9:51

How did you experience the deaths of your grandmothers?

Unknown: 9:55

My first grandmother was my mom's grandmother who died and I. Unfortunately, like they couldn't reach my mom or my dad, and I couldn't reach them. They live in Pennsylvania, and she was in Jersey, so they called me first. That was the closest. And I'm the one that basically signed the papers the Do Not Resuscitate, because she had been in a in an assisted living community for like, 15 years. She wasn't verbal. I never thought that that was living. So I was really, really sad, because we're super close, but I was also very relieved that she wasn't living like that anymore. Of course, I'm not a fan of, Listen, I'm not a fan of struggle and pain, and you know, you've seen it, you're in this world. There's, there's so many people that hold on and hold on when the right decision is to let go. So that was, it was hard, but I was okay. I was I felt like, very peaceful that I made the right decision. My other grandmother, listen, Becky, you're gonna think I'm crazy or not crazy, but she came to me the night before she died, not crazy. So I was in the bed, the lights were out, and I heard a noise, and I thought it was the nurse. And I was like, who's there? Because my bed there was a wall, so I couldn't see the front door, the door to the room, and nobody said anything. And I just sat there, and all of a sudden I saw this image of this red hat, which I have. It's my grandmother's hat. And she it was like her favorite hat. I saw the hat, and I started talking to her about, I'm getting divorced. I had twins, like they are very sick. I don't know if they're gonna make it. I have two at home that I'm I can't even mother because of the situation I'm in, and I don't know what's going on with them. And I heard one phrase, let it go. And I was like, I thought my initial reaction was, let them go. I said, I don't want to let them go. I want them to live. And then it came again, let it go. And that was the very beginning of my transformation. Like that was the moment where I was like, this is not in my control. I need to release all of this. Give it to the universe. Give it to God. I'm just the character in this story, and there's a reason I got chosen. So I actually discharged myself. My dad waited as long as he possibly could to do the service because I was in the hospital. I finally discharged myself so I could go they're like, We can't wait any longer. So against doctor's orders. I had to sign all the papers, all the hospital insurance stuff. I discharged myself so I can go to my grandmother's service, which was in Connecticut, and I I said, I'll come back. I was like, I'll come back. Needless to say, I gave him a call. I'm not coming back. I will see my doctor on an outpatient basis. But, yeah, that was one thing I was not missing under any circumstance. So I gave birth, and I was speaking at her funeral, like four days later.

Rebecca Gleed: 13:15

Okay, so you What do you remember from the speech? Nothing.

Unknown: 13:20

I remember that my grandmother said to me once, when I die, I want you to wear yellow. And that's like the name of a theme of play. But anyway, I asked somebody to buy me a yellow cardigan and top, and I wrote this speech in the car driving to Connecticut. And honestly, Becky, I don't remember a single thing, except my little brother was like, that was the best speech I ever heard. And I can't remember. I have it written down. I kept it, but I just remember standing up there and speaking, I played her favorite song. I don't know there. She was very, very well known. So there was, like hundreds and hundreds of people

Rebecca Gleed: 14:10

there four days post surgery, and you're on the road to Connecticut giving this speech in yellow. Tell us a little bit more about the journey back the NICU what stands out? What that was like? Yeah.

Unknown: 14:26

So when I first got a chance to see the twins, obviously they were in isolettes next to each other, and I remember just thinking they're so small, by the way, let me just interject one thing, which you will find very interesting. I've had every birthing experience imaginable. So my oldest daughter, I was playing golf with my husband, and my water broke on the ninth hole. We got lost getting back to the clubhouse and, um. Yeah, I ended up like, we finally got home, I got my bag, we got to the hospital, and I was in labor for 36 hours, like I would. The labor started and then it stopped. They gave me Pitocin that didn't help. So I was minutes away from a C section, and I literally said to I had a midwife. I was like, can't you just reach in there and pull her out? Because my pelvic was tipped in a way that she didn't think she could figure it out on her own. So she was like, this is gonna hurt. I was like, do it. So she put her hands in, grabbed the shoulders, pulled my daughter out. What my second son was born accidentally at home.

Rebecca Gleed: 15:42

Oh my gosh. You hear those stories, but here we are. What happened?

Unknown: 15:48

I was watching the US Open with my parents and my husband. It was Venus Williams first her first final, and somewhere in the middle of the match, I was like, Ow. And my mother said, what's going on? I was like, I think I just had a contraction. My dad grabbed their coats and ran out the front door, like it was like, three seconds. He was I was like, Where are you going? He was like, home. No one would be here for so we finished watching the match. I went upstairs, I went to the bathroom, I was peeing, and all of a sudden I felt like something was coming out of me,

Rebecca Gleed: 16:25

because it was perfect, because

Unknown: 16:28

it was, yeah, I called my husband. I was like, I think there's something coming out of me. He's like, it's just poop. I was like, No, I actually think it's more than poop. It came upstairs, I laid on the floor in the bathroom, and he was like, I was like, call 911 and he was a fainter. So I was like, please don't faint. Please don't faint. So I have the 911 tape of them saying, like, you could get her in the car, but she's gonna have that baby in the car. And I said, You know what? I'd rather just stay right here in my dirty bathroom and I will have it at home.

Rebecca Gleed: 17:04

Yeah, and I'm assuming you did.

Unknown: 17:08

I did. Okay, I did, which was actually pretty awesome. It was a little scary, but it was, it was pretty awesome. So yes, then I had the C section with the twins. So yeah, my first reaction was like, they're so small and they're so cute. I just remember thinking, like my heart is full up. And back then, I know now they have, like, individual rooms, but back when the twins were born, which is 19 years ago, it was an open unit, so you could hear everybody's everything all the time. So on the one hand, you didn't really have any privacy, right? But on the other hand, we ended up being a really close knit community of families that were going through the same experience.

Rebecca Gleed: 17:58

So any stories there that you have for maybe another parent who you really connected with, or something that was sad, that had meaning.

Unknown: 18:11

I have so many stories, I think I'll tell you. The most difficult conversation I had was not about my twins, it was about my neighbor and her daughter who, when we got there, her daughter is like seven months old, had dozens and dozens of surgeries, like one after the other, very poor prognosis for any sort of like quality of life as she got older. But they kept having surgeries, they kept approving the surgery. They kept signing the consents. And one day we were in the breastfeeding room together, just she and I, and she just started crying. She was like, This is so terrible. And I said, you know, at some point you are going to have to make a hard decision, right? So you can keep doing these surgeries and keep doing these interventions knowing that she's not going to have a great quality of life, or you can make the decision to give her the like that she has right now and stop that was a tough conversation. She asked me a lot of questions. We talked a lot about faith and the spirit, the spirit of it like, what does that look like? I said it looks like you giving it to God. Like doctors are just men and women. They're just humans, like we are. They don't have all the answers. We're relying on them to guide us. But the truth is, your daughter knows herself exactly what she wants her path to be. So give her that opportunity. If you don't do the next surgery and she lives like that, is a win, yeah. And if not, I said to her what I said to myself, if my twins don't make it, I'll just be so grateful that I had them for as long as I. Had them, whether that was a couple of hours or a couple of days, like, just full of gratitude. So she ended up not doing that next surgery, and her daughter died a couple of days later, and I went to the service, and it was, like, really sad, but she ended up telling me she was actually relieved. She felt like this huge, like weight lifted off of her heart, yeah? And I said, that's a good thing. That's your daughter's aim. That is your daughter as an angel giving you a hug and thanking you.

Rebecca Gleed: 20:34

Yeah? I mean, this is really part of healing, like therapy is just one pillar of healing and finding peace. But I think what I'm hearing from you is like connection and faith and this balance of fear and hope, anything else around the NICU experience that you want to share of either connections or the environment. It sounds like that open unit had some impact on you.

Unknown: 21:04

It did have an impact. And I, you know, I've gone back to visit because I speak, I go back to NICUs all the time to go speak to the parents. And now they have individual rooms, which I'm glad they didn't have when I was there, because, don't forget, I was there by myself, like there was nobody coming. My ex showed up, and he would start screaming at me in the middle of the NICU. So he was ultimately banned from visiting. Why I was there? So, yeah, I was mostly sitting there by myself. So that community became my family and good stuff and bad stuff, but I will tell you. So the doctors asked me to write a book called preemie parents, 26 ways to grow with your premature baby. And I started the book with the principles that I developed for myself, like I had to come up with my own coping strategy. So don't forget, I had two in the hospital and two at home. It was a 45 minute drive each way to the hospital, so I literally was always talking myself off the ledge in my car, of course. Yeah, and this is so I came up with what I call the principles of peace. Peace is an acronym. The peace stands for the Power of Intention is greater than anything. It's greater than any reality. And I developed that when I was on bed rest. Actually wrote on a piece of paper. I will keep these twins inside of me until April 11, and it was February, and that was on my bulletin board. I looked at it all the time. Every day I didn't make it, but I was really focused on my intention, not my situation. My intention. Yeah, so that was the first piece. The second letter is E, which means that everything is energy. Everything is energy. So I was very sad, troubled. Is like an understatement. When I first went into the NICU, I was like, What in the world? There's machines dinging doctors and nurses are running around like, you know, I don't have to tell you, it's, yeah, chaos, the noise, pure chaos, all of it. And then when you walk in, and all the doctors around your isolate, you walk in, and you're like, Oh my God, what's going on, right? So after the first couple of days, I remember I was in the parking lot, and I was like, You know what? I believe everything is energy. I always have believed that. So I decided that I was not going to walk into the NICU sad and depressed and scared that I was going to go in with a positive attitude. Because I believe everybody picks up on your energy, the doctors, the nurses, the babies, the other families. So I made a conscious decision to get my mind straight before I went to the NICU, because I do believe everything is energy positive and negative. How did you do that?

Rebecca Gleed: 24:04

A visualization for anyone listening. How does somebody in those 45 minutes of a commute to the NICU get their minds in a healthy, positive way?

Unknown: 24:16

I did a couple of things. One is I stopped listening to the news, so I turned off, I would turn music that made me happy. And I know that sounds like really simple, but it's

Rebecca Gleed: 24:27

it works powerful

Unknown: 24:30

before I put the music on. Though I breathed, I just really focused on breathing. And I don't know about you or your listeners, but I tend to hold my breath when I am under stress. Yeah, exactly like I carry it all like I'm like this. So I made sure that I was sitting up tall while I was driving, and I did 10 deep breaths in, hold, hold, hold, 10 deep breaths out. And I don't know what it is about breathing, but it. Just makes your brain like, relax, yeah. Um. And then I also made sure that I ate something on the way which I lost an incredible amount of weight, not in a good way. It's because of the stress I wasn't eating. People notice, like my brother said to me, you look like a skeleton. So that was the other thing about getting my mind right is taking care of myself. So I made sure that I ate something on the way there, and then, I guess I also made sure that I was being very present, like today is a new day. This is not yesterday when all that drama was happening. It's not tomorrow. Or there's going to be, maybe a procedure it is right now, in this moment, where I have all of my power. So I was very intentional about being focused on the present, not seeing a situation worse than it is, or better than it was, just right now. That's really what helped me, like, get my brain straight. And by the way, I also did listen to motivational tapes, CDs, so I downloaded a bunch. I didn't have an iPad at that point. I just had my phone, so I downloaded a bunch of my favorites onto my phone. So not only did I listen to him in the car, but I listened to him when I was in the NICU like all we do is sit around. So I, you know, I think your mind is like a garden, which you plant there grows, yes, so I had all that free time, so I would just listen to motivational speeches and read that kind of thing, incredible.

Rebecca Gleed: 26:35

I think those will be some takeaways for the audience. How about the A?

Unknown: 26:40

Yeah, yeah. So the A is that all things will move into balance eventually. That's the natural order of things, right? Black, white, sun, moon, everything is going to move into balance eventually. And you have to prepare yourself for that, that it's not going to come in your time frame, that it's not going to be the way it that the way you want it to look like. My life was completely different when I was in the NICU, but I knew that eventually everything was going to write itself. And I think that's really important to hold on to, regardless of, yeah, the whole and by the way, no matter what the outcome is your life is going to write itself eventually. The C, I kind of touched on, C means caring for yourself, like caring for myself precedes caring for anybody else. So I got really, very serious about making sure that I left the hospital to eat. I started taking I was on a whole supplement regime to make sure that I had the energy and the focus and sort of the physical stamina to deal with what I was dealing with, because it's a lot that drive, sitting in the NICU for 12 hours a day, going home to do homework with the kids. It's a lot. And everybody, I'm sure your listeners, have similar like, they're working a job and they're taking care of the house and they're it's a lot. We all should have a big, giant s on our chest. Yes, we're super, super women, but you got to take care of yourself to make sure you can actually do all that stuff. I was just going to give you the last E, which is that everything is exactly as the universe intended it to be. Like, there is a reason why this all happened to me in this period of time. I feel like I was the perfect messenger. Like, of course, I'm going to go out and talk about it and share my story and try and help other families. So a lot of people ask, like, Why? Why? Why? Like, why did this happen to me? But that's not the right question. The question, I think, is, like, how? Like, how can I parlay this into something better? Like, how do I grow through this, not just go through it. So, yeah, I think accepting that this, this is your new reality, this is your new normal. Instead of fighting against it, you just have to lean into it.

Rebecca Gleed: 29:12

A lot of my guests, as you know, have been able to create some beautiful meaning out of really tough experiences, and that's what stands out. You know, with you done the same, you've created some meaning, and like you said, can now be a spokesperson and supporter of all of these other families. What was their journey they went in 25 weeks, and then tell us a little bit more how they

Unknown: 29:45

a long, long journey. The journey, by the way, is still happening. So my daughter spent four months in the NICU, and they said to me, about a month before she was discharged, you have a choice to make. Either she has to be breathing on her own or eating on her own. You have to choose the path. She's going to either come home on oxygen or she'll come home like nursing, which I did, by the way, a pump. The entire time I was able to nurse Maria. I nursed my son, until the hospital Council found out, and they said I couldn't nurse him anymore because it was too risky. So that was great. I called my dad, who's an attorney, and I was like, I feel like I want to get a lawyer, like, how can they prevent me from nursing my son because he's on a ventilator, because he had all these tubes and stuff, but I had a great nurse. We did it successfully for weeks, where he latched and ate and his SATs lowered, like he was so calm when he was nursing, but they made me stop. So anyway, I'll get back to train a sec. So I chose eating, so we were totally focused on making sure that she could latch and that she was getting enough milk. So that took us, I don't know, probably two or three weeks till they were satisfied that she was, you know, gaining consistent weight. So I brought Maria home. I have a funny story. I'm the only woman you've ever met that asked the NICU to keep their kid for the weekend. Tell us more. So they said on Monday, we're gonna discharge, discharge her on Friday. And I was like, Oh my God, that's great. And then I went home, and I was like, wait a minute, it's Fourth of July weekend, and this is my last hurrah with my two other kids before it's going to get crazy, like when she comes home, I knew it was going to be a wrap, so I asked them to keep her for the long weekend, and I took the kids down to the beach, and we hung out at the beach. It was, it was actually an extraordinary weekend, because it was the first time I really had a chance to talk to them about what had happened and what's going to happen. And if you don't mind, I'm going to tell this story. It's like my favorite story of my entire NICU journey. So we went down to the beach and we went out to this, it was like a, I don't know, a vaudeville show was like some weird like, barbershop quartet, and we had ice cream, and we were eating, and on the way back, we were walking, and I was walking with my daughter, who was like, seven, and my son was about four or five, and he ran ahead of us, and it was dark, and I could hear his footsteps, and then it stopped. And I was like, Shane, and he was like, Yeah, you got to come see this. So we walked up to him, and there was this pile of construction debris, rocks, wood, glass, and in the middle of all of that debris, there was a Petunia growing, and I was like, you guys, let's come back in the morning, like, I want to see this in the morning. So we went back. I took a picture, which I still have on my shelf. That's that, if I gave a copy, gave it to my kids, but I said to them, this is like a metaphor for our life. Yes, like everything feels like it's ruined, like Dad and I are divorcing, and you have your siblings are in the hospital, and you haven't seen a lot of me, because I'm going back and forth. But out of all of that chaos and all of that debris, all this flower needed was a little sun and a little water, and it was enough for it to live, and we're going to do the same exact thing. Okay, we just need a little bit, and then we're going to be fine. So yeah, that was incredible that weekend. But that's what happened. I took them down there. We had this, like, really intense, beautiful moment, and then I picked up Bria. When we got back, I picked her up and brought her home. And that was scary, like she was on oxygen. She had sleep apnea, so she would stop breathing when she slept, so I mostly was up while she was asleep. I was awake, yeah, like making sure that she was still breathing. She had difficulties, like she had speech therapy, she had physical therapy, occupational therapy, you name it. I got a good lesson for your listeners from a parent. Yeah. They said, like, maybe she should have therapy. And I was like, you know, she'll be fine. And this parent said to me, always take the help when it's offered. If they're offering to send therapists into your home, do it because it'll just put her ahead. When she actually, like, gets to school, it'll get her ahead developmentally. So she was extraordinary. She turned her brain turned on when she was five, and so. Ruth sailing. She's an athlete, brilliant. She's now a sophomore in college studying biology and science, like she's gonna develop the cure for something. Yes, Trey's journey was a lot longer. So you know, I got calls in the middle of the night at least three or four times a month that like he's not going to make it come now. So you know, I'd be driving at two o'clock in the morning to the hospital, and I finally told the doctors enough with these phone calls. I don't want you calling me in the middle of the night anymore unless it's something serious, like saying I don't think he's gonna make it. That's not helpful. And that's when I said to them, like, you're not God, you're just a man. So when, when somebody really intervenes, let me know. But I'm not driving in the middle of the night anymore because I had to find a babysitter like my kids were little. So they call me to come to the hospital. It's like I'm getting people out of bed to, you know, come to my house. So anyway, Trey had numerous surgeries. He had a trach placed when he was three months old because he had literally no airway. He was ventilator dependent, oxygen dependent. He had hernia surgery. He had a hole in his heart. So he had heart surgery. They closed that. I signed the consent. I said, what's the likelihood that this is going to open? They said, almost nothing. And why did that thing open two months later? So we had to have another heart surgery. He had a G Tube placed because he wasn't getting like enough nutrition. He was eating through a tube in his nose, and he was getting too big for that. So he spent nine months in the NICU, and then he was too big for the NICU, so they sent him to the PICU, the pediatric intensive care unit. So we did four months in the PICU where he he got Marisa, and when I thought we were out of the water, he had one foot in the grave. It was so bad that, like all the doctors from the NICU came up, my brother drew from Baltimore, quirky. That was the first time I was like, Wow, this kid actually might die like he was on the highest ventilator settings. People were just coming in, and it felt like they were paying their last respects, which was the first bucket of cold water I had. I was so busy being positive that I was like, whoa. This is actually might happen. It was touch and go for like 48 hours. But anyway, he got through that, by the way, that extended his pick you stay. So instead of being there for what was supposed to be like, a couple of months, he ended up being there for four months. He had encephalitis, which is water on his brain. So we had to go to see a neurologist in the city, in New York City. I love this guy. You know what he was like? Does he seem different to you? I said, No, he he seems like he's acting the same as he always has. He's like, Well, let's not worry about it. I'll see you in six months. Okay? Like he has, he has so many other things going on, like we're gonna leave this one alone. So after the four months in the PICU and they told me that he had a really poor prognosis of living, I said, Well, if he's not going to live, I want that to be at home, like if he's if he's not going to make it, I want it to be at home, not in the hospital. So they transferred him to a rehab facility where he spent four months, and the whole goal was to get his ventilator settings down so that I could bring him home. So which I did, brought him home with all of the accouterments.

Rebecca Gleed: 38:50

Yes, yes. What do you remember about that first day him being there?

Unknown: 38:57

I remember giving him a tour of the house. Oh, so the kids were in school when I got home, my cousin came with me. It was a two person job, getting him home, like

Rebecca Gleed: 39:08

making sure he was over a year, no, because nine months and then it was, he was, he was,

Unknown: 39:15

it was like 18 months

Rebecca Gleed: 39:16

old. 18 months Okay,

Unknown: 39:19

yeah, it was 18 months old. So my cousin got us in the house, and we got the equipment set up and stuff in his room, and she left, and I was like, Well, let me show you your home. So I remember holding the ventilator on my shoulder, the oxygen on my shoulder, and tray in my arms, and walking him around the house like, this is our kitchen. This is the yard you're going to be playing in the backyard. It was so I was just happy to be by myself with him. Yeah, so happy. So that's what. I toured him around. I put on some music. We just literally sat and stared at each other for, I don't know, like, an hour. And a half he was home just to not see him through glass and to be able to hold him without somebody helping me was awesome.

Lana Manikowski: 40:14

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. See