Hello friends 👋

In this episode of Beyond The Beeps, host Leah Jayanetti speaks with Adriane Rodriguez, a mother whose daughter, Viviana, was born with Congenital Pulmonary Airway Malformation (CPAM), a rare lung condition. Adriane shares the emotional journey of discovering Viviana's condition during pregnancy, navigating complex medical decisions, and spending months in and out of hospitals, including time at the Children’s Hospital of Philadelphia. Adriane recounts the difficult decisions they faced, including the possibility of fetal surgery and the uncertainty about Viviana's ability to survive outside the womb. Viviana's eventual birth was a moment of triumph as she defied expectations, breathing on her own and crying—a miracle after months of anxiety. Adriane discusses the challenges of NICU life, from not being able to hold her daughter to managing Viviana's recovery after surgery. She also reflects on the importance of hope, resilience, and self-care for parents in the NICU, urging them to lean on their support systems. Viviana is now a thriving nine-year-old, embodying the strength and determination she displayed from the moment she was born. This heartfelt episode provides hope and comfort to parents facing similar journeys.

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Learn more ICU Baby here: https://www.icubaby.org/

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The transcript of today's episode can be found below 👇

Leah (00:01.686)

Babies end up in the NICU for a lot of different reasons. Very often it's prematurity, so a baby born before 37 weeks gestation, or they need a little help adjusting to life. But sometimes, and actually quite often, babies have something going on with them that's congenital, so something that they're born with, that makes it so that life outside of their mother's womb is impossible.

One of those babies, mothers, is here joining me today, Adriane Rodriguez, who is just a real pleasure and has become an amazing friend to me. She's one of our NICU mentors with ICU Baby and has supported hundreds of families herself. But beyond that, she is the loving mother of two children, wife to her beautiful husband. And...

She's also a registered dietitian prior to even having children. So she knows a lot about nutrition and what's healthy diets for pregnant women and lactating mothers. And then she went on just recently to get her to become a certified lactation consultant as well. So she's really morphing all of these skills together around what we do a lot in the NICU, which is feeding mothers, feeding babies.

and making sure that everybody in the family is well. Today she's here to join me to talk about her daughter, Viviana, and her experience with her in the NICU. Welcome, Adriane.

Adriane Rodriguez (01:42.107)

Hi Leah, thank you. It's good to be here.

Leah (01:44.426)

Yeah, yes, so glad to have you. So catch us up with what brought Viviana to the NICU.

Adriane Rodriguez (01:47.583)

Thank you.

Adriane Rodriguez (01:55.471)

Okay, well, our journey to the NICU was a little bit different. Like you said, a lot of our babies, a lot of babies that we see in the NICU are premature. And they have to come to the NICU because they're just simply too little to live outside their mom's womb. But that was not VB's story. Our journey actually began, our journey to the NICU actually began much, much earlier than

when we actually set foot there. When I was 18 weeks pregnant with Vivi, I'll never forget, we celebrated Mother's Day and I had taken a picture and I was like, oh, look at this cute little bump. And I was so happy. And we already had our son, we had a little boy and we were having our little girl. We had already done the genetic testing at 10 weeks.

Leah (02:44.854)

Yeah.

Adriane Rodriguez (02:54.307)

It was all good. You know, we were like, woohoo, you know, like she's, and we found out she was a girl. So we knew that. So we were like, yay, everything's fine. You know, like I stopped worrying after that. You know, I already had a healthy baby boy. The genetic testing was good. I was like, okay, we don't have anything to worry about. I had an easy pregnancy the first time, a normal labor and delivery. And I was like, okay, we got this. The very next day I went in for...

Leah (03:05.219)

Right.

Leah (03:11.403)

Right.

Adriane Rodriguez (03:24.151)

our anatomy scan. And I'm still not really clear if this is something that they do for all mothers now, or because I was advanced maternal age, I was an older mom, not too old. At the time I was 37, and so I was categorized. But I had that with my son too. So it was just a routine screening, an anatomy screen.

Leah (03:36.814)

What does older mom mean?

Leah (03:41.12)

Okay.

Adriane Rodriguez (03:49.951)

They were just going to do an ultrasound. They were going to check everything, say, you know, we see her heart, we see her lungs, you know, all that stuff. I had done it before, no big deal. So that's the next day, Monday, the day after Mother's Day. And I go in and we're doing the scan and she's checking everything and she's like, oh, I see this, this looks good, this looks good, whatever, whatever. And looking back on it now, I remember, they actually didn't say anything about her lungs.

I didn't think anything of it at the time, but now looking back and I was like, oh, you know, it all makes sense. So she finishes up, she sends me to the waiting room and I'm waiting and I'm like, okay, why am I waiting so long? She didn't mention anything in the ultrasound, like, why am I still sitting here? And then somebody opens the door and they're like, you need to come see the doc.

Leah (04:22.68)

Sure.

Leah (04:31.414)

Right.

Adriane Rodriguez (04:42.207)

Like, why? Why do I need to go see the doctor, the maternal fetal medicine specialist? So I go in, I sit down, he's behind his desk and he's very somber, not a friendly, it wasn't a nice environment for me. I walked in and already I was already anxious about it and he's like, your daughter has a huge,

Leah (04:43.778)

Oh, yeah.

Leah (04:50.527)

Right?

Adriane Rodriguez (05:12.171)

tumor on her lung. And I was like, I'm sorry, what? He's like, yes, it's something we call blah, blah. He started to talk about it. And I'm like in shock already. I can't hear anything else. And I'm by myself. My husband didn't even come with me, because we're like, oh, she's fine. We already knew she was a girl. I'm like, and they're done that. So I'm just sitting there now in front of this guy. And the next thing he says to me is,

Leah (05:24.895)

Yeah, can't hear anymore.

Leah (05:31.206)

Oh jeez. Yeah.

Adriane Rodriguez (05:40.507)

I need to let you know that in Florida at 18 weeks is when your baby is beyond 18 weeks, you can no longer terminate your pregnancy. And I'm like, I'm sorry, what? He's like, yes, if you want to terminate this pregnancy, you have to decide basically now. And I'm like, what? Like terminate my pregnancy? I'm like, I was just, it was just, it was too much. And I was a heartbeat.

Leah (05:53.568)

Hmm.

Leah (06:02.614)

Well, yeah.

Leah (06:07.478)

You were there for a heartbeat, right? And like measuring how big her hands are and.

Adriane Rodriguez (06:10.523)

Yeah, and then he's like, do you want to end your pregnancy? And I'm like, I couldn't even wrap my head around it. And then prior to that, he was like, you know, she has this and you know, there's a chance that she'll be fine. And I'm like, okay, so I'm like, you just told me there's a chance, right? You said there's a chance that my daughter will be fine and that she'll live a normal life and that she'll be okay. And he's like, yeah, there's a chance. I said, okay, that's all I need to know. That's all I need to know. I said.

there's no other option for me. So that's what we're doing. So I said, thank you very much. I went home, I told my husband, and my husband immediately, he starts working. He's like, okay, what are we going to do? He's like, basically what it was is she was diagnosed with something that they call CKAM. It's a congenital cystic adenomatoid malformation. Basically a huge mass of...

unviable lung tissue. It's just like a big mass of tissue where her left lower lung lobe was supposed to be. And already at 18 weeks, it was big. It was already big and they could see it. I can see it, you know, and I'm not, I'm not trained. So that was the concern that he had, the fact that, you know, a lot of babies, it's not, you know, I mean, it's not super common. I mean, it's common enough, you know, most babies that if they have it, they're small.

Leah (07:13.058)

Mm-hmm. Oh, wow. Yeah. Sure.

Adriane Rodriguez (07:35.207)

A lot of times they don't even notice them. But hers was already so big, it was already starting to kind of push things, push her heart a little bit. And so that's why he was so concerned. So immediately my husband starts researching. He's like, okay, what are we going to do? We're not ending this pregnancy. We're going all in. We're doing whatever it takes, no matter what we need to do, we are going to fight for our little girl. And I mentioned to you earlier, we had a list of names.

Leah (07:50.699)

Right. Yeah.

Leah (08:05.591)

Yeah.

Adriane Rodriguez (08:05.755)

you know, for our daughter. And one of them was Viviana. And so immediately I was like, that's her name. She's going to be Viviana, because she's going to be alive. She's going to live. So that's it. So from that moment forward, we just, we went all in. We, because of this diagnosis, we...

Leah (08:28.119)

You told me before, so I just, Viviana, I didn't know this, but Viviana means life.

Adriane Rodriguez (08:33.499)

means life. Yeah, it means alive. It means full of life. So from that moment, I was just like, that's her. She's alive. She's going to be alive. She's going to be fine. And we're going to meet her and we're going to do whatever it takes. So yeah, my little, my little baby. So anyway, like I said, the mass was really big. And so we knew that, you know, she, she definitely had a, a

tough road ahead of her. We all did. We knew that this particular type of lung mass, that it continued based on history, you know, doctors know it, you know, that it keeps growing, basically, it doesn't stop growing. And some of them grow very quickly, some of them grow very slowly, some of them will stop at a certain, you know, like, I can't remember when, it's like 30 or 32 weeks or something, like some of them will stop growing. But

they do continue to grow particularly quickly in those, right where I was 18 weeks to like 28 weeks, like for those 10 weeks. So the next thing we did is we made an appointment at the Children's Hospital of Philadelphia with their maternal fetal medicine team. And cause we just, we needed to, we wanted to help her and do whatever we could. And so I got on board with them.

Leah (09:56.446)

But you're here just for reference for those listening. You're in Miami, Florida, and you found you. Sure. Yeah.

Adriane Rodriguez (09:58.747)

in Miami, yeah, which is an amazing place to have a baby. You know, like the medical care here is phenomenal. There's teaching hospitals here and you know, they, you know, maybe could have managed it here, but we really wanted her to, to go to the place where they were, you know, really experts in this particular diagnosis. Yeah. That's what, that's what he does. Yeah. That's what he does. You know, whenever, yeah.

Leah (10:19.254)

And that's what all that research was that your husband was doing and sort of finding out and what should we do about that? Yeah. Figure out what to do.

Adriane Rodriguez (10:29.259)

What's the best thing to do? So best for her, hard for the rest of us. So what ended up happening is I went there and they worked me up and they were like, yes, this is a really significant C-CAM. They call it CPAM now, like congenital pulmonary airway malformation. But at any rate, it was a significant tumor already. And they know because they see a lot of babies with this condition.

Leah (10:31.402)

Okay.

Adriane Rodriguez (10:58.067)

They know what happens. They know what continues to grow. They know you need to be monitored very closely. So that started our path to the NICU. I also have a son already, so an 18 month old, wild, fun, full of life little boy who has now, you know, in this with us and we have to figure that out too. So.

Leah (11:11.062)

Right.

Leah (11:24.288)

Yeah.

Adriane Rodriguez (11:26.451)

without disrupting his life too much, you know, because, you know, he doesn't, he's too young. He doesn't understand what's going on. He doesn't know why mommy's crying and why dad's, you know, a nervous wreck. And, you know, he doesn't know why we're flying to Philadelphia. And then we moved to my mom's house. We moved to New York because the recommendation from the Children's Hospital Philadelphia CHOP was that I be monitored

Leah (11:29.262)

Sure.

Adriane Rodriguez (11:56.079)

ultrasounds every week from then on, sometimes twice a week. So the only way to do that was to move closer. I couldn't move to Philadelphia. We didn't know anybody there. Staying in a hotel is hundreds of dollars a night. That wasn't really an option. So we moved to my mom's house in New York, which was a short five hour drive to Philadelphia. And...

Leah (11:58.087)

Mm-hmm. Okay.

Leah (12:05.079)

Right.

Leah (12:13.816)

Right.

Leah (12:22.058)

Wow, that's, yeah.

Adriane Rodriguez (12:25.651)

That's what we did. My son and I, we packed up and we lived out of suitcases and my mom drove me. She's amazing. My husband had to work. He couldn't come. So my husband, he stayed alone here in Miami. He sent his pregnant wife with a daughter with a serious medical complication and his son off to his mother-in-law's.

Leah (12:47.435)

and his toddler.

Adriane Rodriguez (12:54.047)

That's what we did for five months. Five months, yeah, pretty much.

Leah (12:58.67)

Okay, so at five months, now you're, how far along are you when you're pregnancy at that point?

Adriane Rodriguez (13:04.991)

So we did the back and forth. We went to CHOP, I had ultrasounds. It was super stressful because her tumor kept growing. You know, I wasn't one of the lucky ones whose, you know, VB, it just kept getting bigger and bigger. At one point it got so big that she could no longer swallow amniotic fluid. It was compressing, the tumor was pushing her heart, displaced to the right side of her body.

It was pushing on her esophagus and she was no longer swallowing enough amniotic fluid. So if you saw me, I looked like I was either carrying triplets or twins or triplets when I was six months pregnant or ready to pop. I was huge because I...

Leah (13:50.786)

Did they ever ask you, like, because you look ready and that she wasn't swelling, was there ever a conversation about, hey, we might need to take her now?

Adriane Rodriguez (13:57.751)

Yes, yes, that conversation happened. So one of the things that you can do, there's a couple treatment options when that starts to happen. Fortunately, both Vivi and I were both doing okay. Neither of us were in distress by some miracle, I don't know, because they could have fetal high drops, the baby can go into distress or fetal demise. She could die from this, but fortunately, she was still doing okay. So a couple of the options were,

One was to perform fetal surgery, where they would basically open me up. I think that like essentially they remove her while she's still attached to the umbilical cord, resect the tumor, stitch her back up, and then put her back inside me, which my husband was like, we're not doing that. He was like, there's just no way. He's like that. And he just, he's like, I'm not losing you and her. And it just didn't seem.

like a viable option and we didn't agree on that. I was like, I'm doing whatever it takes, you know? This is my daughter and I'm going to do whatever it takes to help her, you know? I'm her mom already, you know? I haven't met her, but she's my baby. And, you know, that was the only option.

Leah (15:13.618)

Yeah.

Adriane Rodriguez (15:20.947)

Fortunately for us, it didn't come to that. They were able to offer us another alternative, steroid shots for me. And what the steroids would do was just slow down the growth of the tumor enough for her to kind of, you know, continue to grow, to get bigger so that the tumor stays small, stays that size, but she grows, so it doesn't take up as much space within her, you know.

Leah (15:46.862)

Sure.

Adriane Rodriguez (15:50.623)

chest cavity. And so I had a couple rounds, two rounds of steroids and it worked, you know, it worked by some miracle. It was still a large sized tumor, but it, you know, it allowed her to continue to grow, you know, with inside of me. And, you know, we didn't have to do any other, anything else, you know, yet. So we...

Leah (15:58.546)

Yeah. Yep.

Leah (16:15.502)

Okay, this is still going back and forth at the, you know, every, okay, and by the time you had this procedure, where does that bring you to?

Adriane Rodriguez (16:19.107)

Yeah, still all going back and forth, going back and forth. Yeah. So I guess this gets us. Yeah. So I had the steroids and then I would go back to my mom's and then, you know, then we would go back and they would measure as every time I went to the doctor, every time I went in, they would measure the tumor. So there she would be up on the screen on the ultrasound and they're measuring all these things. And it's just like, it's so anxiety producing because I'm like, oh my gosh, is this going to be the time where they say it's too big? You know, or is this going to be the time where they're like,

Oh, it's not growing, you know? So like every time I'm like, it's so stressful, you know? It's just, it's awful. And uh.

Every time I walked in that place, I was just like a nervous wreck. You know, I was just like, what are they going to tell me today? You know, what am I, what's going on inside of my, my body? Like, I can't see it. I don't know. You know, they're going to pull up the screen and start doing these measurements and that you're watching it, trying to figure it out. Like, okay, is it smaller? Is it bigger? What was it last time? Like trying to like piece the puzzle together. And yeah, it was a lot. It was a lot. So I got to be, I think like.

Leah (17:01.942)

Yeah.

Leah (17:05.367)

You're on edge.

Leah (17:18.242)

Yeah.

Adriane Rodriguez (17:26.515)

maybe like 34 weeks, which was amazing. Yeah, yeah. And at that point they were like, okay, you know, she can't be, you know, she has to be delivered via C-section because she, with a tumor this size, there's a good chance she's not going to be able to breathe when she's born or that she won't be able to go through like the stress of labor. So at that point they're like.

Leah (17:30.37)

Okay, that's amazing, yeah.

Adriane Rodriguez (17:52.119)

you need to move here. You can't keep going back and forth. You can't stay with your mom five hours away. You need to come to Philadelphia." And I'm like, oh my God, okay, what am I going to do in Philadelphia? I started looking up the hotels and they're like, $500 a night. For an unknown amount of time, it could be months. Because I knew she was going to be born with, if she was born alive, she was going to have a serious medical issue. She was going to...

Leah (18:11.224)

Right?

Adriane Rodriguez (18:19.899)

either require immediate surgery or it was going to be surgery soon thereafter. So like we knew we were going to be there for a while, you know. So thankfully we were able to move into the Ronald McDonald House, which they have one here in Miami. And you know, I think I thought one way about it before I went there and it is a godsend, a lifesaver.

Leah (18:27.512)

Right.

Adriane Rodriguez (18:49.387)

It's amazing for a family that needs to be by their baby's bedside or, you know, for an unknown amount of time. It was the greatest blessing that I could have ever hoped for. It's a wonderful place and we live there. I live there with my son, my toddler, and my mom because the other thing is I couldn't be alone because they're like, you basically need a babysitter because you can't be on your own. Because if you go into labor, like we need you to immediately be.

Leah (19:14.443)

Right.

Adriane Rodriguez (19:19.507)

they didn't know what was going to happen. So, you know, I have my babysitter, my mom and my son. And yeah, we moved into the Ronald McDonald House. So the place is amazing. It's a little bit, it's a little farther away than, you know, we have here in Miami. We had to still drive, but it was very close and it's free. It's a free, I mean, you don't have to pay to be there.

Leah (19:29.258)

And that's right there on the campus of CHOP.

Leah (19:37.527)

Mm-hmm.

Leah (19:44.078)

Amazing.

Adriane Rodriguez (19:49.287)

and they feed you and you have a room. And there's a big meeting area where people get together and they bring people in and my son has like a little playground and there's toys and they even, we celebrated his second birthday there. And as a mom, I'm like, oh my God, what am I going to do for my baby's birthday? And they threw him a birthday party, a birthday party. They gave him presents.

Leah (20:10.466)

Of course.

Leah (20:13.986)

The sweetest.

Adriane Rodriguez (20:16.275)

and all the other families and other kids that were there with us, they all came to his party. And it was like, it was amazing. Yeah, I, to this day, we still, you know, we, we sent, you know, something to them every year because what they did for my family is, you know, you can't, it can't be replaced. It was, it was amazing. So yeah, so we were there. And

Leah (20:37.111)

Yeah.

Adriane Rodriguez (20:42.599)

It's funny enough because I mentioned that, you know, I had this condition, polyhydramnios, which is basically having an excessive amount of fluid in your uterus. By the time I got to the end of my pregnancy, because I was able to, to keep Vivi somehow, um, from, you know, from, I didn't go into labor. And she stayed, she did her part, you know, she, she hung on. She, she's a fighter from the minute she was conceived, this girl, she was like, I'm coming.

Leah (21:06.068)

Yeah.

Adriane Rodriguez (21:10.875)

You know, I'm full of life and I am going to be here and I'm going to prove to this whole world, you know, that I'm meant to be. So I went in for an ultrasound and they were like, you don't have any amniotic fluid left. It was gone. At the end, yeah, I actually looked less pregnant when I was 40 weeks than I did when I was like six months pregnant, seven months pregnant. It was wild.

Leah (21:25.43)

This was at the end of the pregnancy.

Leah (21:36.119)

all the fluid had come down.

Adriane Rodriguez (21:38.855)

I guess she was able to swallow it and she took care of it. So they actually had to bring, immediately they were like, you need to go for C-section now. Which I felt good about because already I had to pick the day and I was like, that's a little weird. They're calling me like, what day do you want to have your baby? And I'm like, I don't know, I'm not God. I didn't want to do it. So I ended up, I didn't. She picked her day.

Leah (21:52.907)

Yeah.

Leah (22:01.23)

Yeah.

Adriane Rodriguez (22:07.295)

So on October 8th, sorry, now I'm definitely rambling, but on October 8th, they scheduled me for C-section and I was terrified, right? Because she's been safe here with me. I've been, she's breathing, she's alive in my belly. And when she comes out, we have no idea what's going to happen.

Leah (22:12.616)

sick.

Leah (22:21.931)

Yeah, of course.

Leah (22:30.462)

In your belly. Yeah.

Leah (22:36.598)

What had they told you about what was going to happen?

Adriane Rodriguez (22:36.959)

The tumor.

So what they told me is her tumor is so big that most likely when she's born, pretty much like guaranteed me that when she's born, she will not be able to breathe. Her tumor is going to have taken up so much space and it already, it was her right upper, it was her left lower lobe that was basically just a huge mass of non-viable lung tissue, but it had compressed the right upper lobe as well. So that.

that lung was not really developed at all. And it was pushing on the other ones on the other side too. So the, I'm sorry, it was the left side. It was all on the left side. And on the right side, it looked like normal lung tissue, but they just didn't know. They didn't know if she would have enough viable lung tissue to survive on her own without immediate intervention. So what they do at CHOP, one of the really cool things about this hospital is,

They have something called the S.D.U. The Special Delivery Unit. And basically, you know, you go in as a mom into your operating room for your surgery, your C-section. And right next door, they have set up the whole team of surgeons waiting to operate. You know, at these teaching hospitals, these big, they have all kinds of things going on there all the time. The C-cam that my daughter had is just one of the many, you know, complications that they're seeing.

on a daily basis. So they have her team there. I joke around now. It wasn't at all funny at the time. It was terrifying. But that, you know, they were basically just going to take her out and then like pass her through a window, you know, like, there you go. Here she is. And immediately she was going to have surgery and they were going to resect the lung and then she would hopefully survive that and then go into the NICU. Finally, after how many months? I see this is like five months, about five months, you know, after we found this out.

Leah (24:18.455)

Yeah.

Adriane Rodriguez (24:35.103)

that she was being born and then she would go to the NICU. But my Vivi, the force that she is, that's what my mom calls her, the force. When she was born.

Leah (24:42.262)

Hehehehe

Adriane Rodriguez (24:52.779)

She not only could breathe, she cried. Like, at the top of her lungs, they took her out of my, you know, they removed her and she's, and I was like.

Is she crying? You know, she's crying, she's breathing. You know, she's breathing, she's alive, you know? And the whole, everybody, the whole op, my husband, the opera, that's, everyone was like, like nobody could believe it. Because this, this mass was so big, they were for sure certain that she was not going to, she wasn't going to breathe at all. But she did, she did. She was able to breathe. She still needed.

Leah (25:11.979)

Yeah.

Leah (25:35.35)

and they brought her over to the other unit.

Adriane Rodriguez (25:37.731)

They didn't. So what happened was they she did need a little bit of nasal cannula because she didn't have enough lung, healthy lung to, you know, maintain her own oxygen levels. So they put a nasal cannula on her and they said we quick, quick plan, you know, plan change plans, change plans, you know, what they decided to do was to take her to the NICU. So she, you know, started her NICU journey and

They said, we'll wait two days. We're going to wait two days. We're going to give her two days to kind of just acclimate to being out here. We're going to see how she does. And then, because sometimes babies with C-Cams, they'll let them wait a couple months if they're not too big, but they knew, hers was so big, they were like, she's never going to be able, she'll just be on oxygen for all those months. Like she can't, she'll never be able to breathe on her own. We're going to have to take this out anyway, so let's just do it. So.

her second day, two days old. She had her little rib stuck out a little because the tumor was so big, it was pushing out her abdomen. But beyond that, she looked great. She looked like a healthy little girl. So we got to see her. I didn't get to hold her because they rushed her right to the NICU just to start.

everything they had to do to get her ready for surgery, stabilize her, all those things. So when she was two days old, they brought us down to the room that she was in, kind of like the pre-op or whatever. And we had to like say goodbye, but maybe, because she's a very sick little girl going in for a very significant surgery.

Leah (27:22.795)

Yeah.

Adriane Rodriguez (27:29.967)

at two days old and you know, there was no guarantee that she was going to survive. You know, in my heart, like deep inside of me, like I just really felt like, like she would. I mean, I say that now because she did, but even at that time, I was terrified. Like I've never been so scared in my life, you know, sending my little girl off to

Leah (27:35.81)

Right.

Adriane Rodriguez (27:59.431)

is six hours. Six hour surgery is what they said it would take about six hours to resect the enormous tumor that she had. Oh my God, it was like the longest six hours of my life. And like, I know other NICU moms have, now that I'm in the NICU a lot, I know other families, when they have to do this, it's excruciating. And you go.

You say goodbye, you give them a little hug and kiss, and then they leave, and you just pray, and you hope that your baby's going to come back. And then for six hours you wait. You just wait. You wait. Oh my God. But then, while I have my son, who has no idea.

Leah (28:44.082)

Yeah, let's talk about that waiting. Where were you waiting?

Leah (28:52.076)

Hmm.

Adriane Rodriguez (28:54.195)

I mean, he has a little bit of an idea, but he's two. He just turned two. He's like, mommy, when are we going to the playground? And he needs to eat and he needs someone to play with him. And he wants to go see, they have this really cool, enormous marble run thing downstairs. He's like, mommy, come see this. And in some ways it was a nice distraction to be able to kind of like pour into him and just not think about.

Leah (29:10.875)

Mm-hmm.

Leah (29:19.735)

Yep.

Adriane Rodriguez (29:22.119)

you know, not just sit there like for six hours, like in anxiety and panic, you know, I kind of stepped out. For me, like being outside is really helpful. Like I like to get out. Yeah, like the sun for me, you know, here in Florida sometimes it can be a little much, but you know, up there, you know, is to step outside of the unit. By then I was discharged from the hospital. So I was no longer, you know, I had to stay for a couple of days, but by then I was.

Leah (29:26.498)

Yeah.

Leah (29:34.742)

Yeah, being in nature.

Adriane Rodriguez (29:50.483)

living again in the Ronald McDonald house. So, you know, to go outside, to take him outside, to walk and to just like, kind of disconnect from it all just for a little bit, you know, I was very lucky that my mom was with me too. And she helped me a lot, you know, just with him, and you know, just having your mom with you when you're going through stuff is just amazing, so.

Leah (30:02.059)

Yeah.

Adriane Rodriguez (30:17.679)

Yeah, it was the longest six hours of my life. And then when I finally saw Vivi again, like she made it through the surgery, which was obviously the first, you know, well, the first, there's been many miracles up until now because there were many times where, you know, we could have lost her, but she made it through the surgery, which was huge. You know, that was a huge thing for her to survive that. You know, now we have to recover. She's got to recover. She comes back from surgery and she's...

I mean, I've never seen so many things coming out of a little baby. You know, there's both her arms, wires, you know, tubes. She's intubated now, so she's got the breathing tube in. They had put a feeding tube in even though she couldn't feed yet. She's got like, like literally like every part of her body is covered with something. And she's also full of fluid. So she looks like swollen, like it doesn't even look like the same baby that I saw.

six hours. It was hard to see, you know? I mean, and you worry, like, oh, she hurt, is she suffering? And is she going to be okay? And now she has a chest tube in. And it's like, so they're like, you can't hold her for as long as she has the chest tube in. And obviously she was very critical, but like, basically they're like, as long as she has that chest tube in, like, you can't hold your baby. I'm like, okay, well, you know, we'll worry about that then. But

Leah (31:16.897)

Oh. Yeah.

Adriane Rodriguez (31:42.503)

Yeah, it was hard to see her like that after.

Leah (31:45.31)

What did you do when they were like, listen, you can't hold her. And I know you're obviously very connected with your babies and your children. And what were some things that helped you to get through that time before you were able to hold her again? Were there things that you did with her?

Adriane Rodriguez (31:52.503)

Yeah. Oh yeah.

Adriane Rodriguez (32:02.491)

Yeah, so fortunately, well, at first I couldn't do much because she was just so critical. You know, I didn't even want to touch her because I was so scared of introducing anything into her, you know, very fragile situation that could, like, you know, an infection or just, you know, accidentally hitting a wire or, you know, anything like that. But she, you know, babies are amazing. And she's amazing.

she, you know, within a couple of days, she was doing a lot better and they were able to extubate her. So during that time when she was very critical, I didn't do much, you know, I was there, I was by her bedside and you know, I would talk to her and I'm not a great singer. So I wasn't singing to her. My kids will still tell you to the same stop singing.

But I talked to her and I just told her I loved her and I was there for her. But as soon as I was able to participate in helping to change her diaper, once she became stable enough that I could do stuff I did, they started, she had a feeding too, but pretty quickly. Because she was a full term baby, she didn't have some of the hurdles or the milestones to hit that some of our other Nikki babies do. She was old enough.

you know, once she medically was medically stable. And once they took off, you know, once they extubated her and she was breathing, well, she was on the nasal cannula, so she was still being supported. But she was able to start feeding. So they started, I couldn't breastfeed her, which is what I really wanted to do. I had nursed my son and that was really important to me. I really wanted to do that. But I was pumping. That's a whole other thing, pumping.

Leah (33:32.13)

Right.

Adriane Rodriguez (33:59.656)

is a lot. It's hard. It's hard. Yeah, I know. That's a whole other thing. Recovering from surgery and pumping and getting up every three hours, it's a lot. But, you know, I had milk for her. Not much. I didn't make a lot of milk, but I had some.

Leah (34:01.102)

We'll do a whole other episode on that.

Leah (34:22.766)

We'll just cut this out. Give me a second.

Leah (34:31.998)

Bark, bark, bark.

Leah (35:08.358)

It's a big tool. Yeah. You just have to...

Leah (35:19.246)

Come on.

Leah (35:31.278)

Sorry, everybody. All right, go ahead.

Adriane Rodriguez (35:33.527)

No worries. Okay, so what I did is I fed her. I got to bottle feed her. And actually my husband did it first and he sends me a picture because what we did is we kind of took shifts, right? Because we have a toddler and I'm pumping and so we're going at different times. So he would go in the morning first and he got there one morning and they were like, you could feed her. So he's like, okay. So he gets the bottle and he feeds her and he takes a picture and he sends it to me. I said, this is the cutest picture ever. She's like,

like, you know, so surprised, like, what is this? You know, it's the cutest thing with these big eyes. So that's what we did, you know, we couldn't hold her, but we fed her and from the bottle because that's the way that she was eating, but it was awesome. And then, you know, she was working with her pacifiers. So we, you know, I would help her, you know, hold her pacifier cause she would, you know, drop out of her mouth and then, you know, so we would do that, change her diaper, mostly things like that.

Leah (36:06.358)

Ha ha ha.

Adriane Rodriguez (36:31.207)

That's how we bonded initially. But yeah, that's hard. It's hard. It's very hard when you just want so badly to hold your baby and you can't. That's definitely something that, you know, as NICU parents, NICU moms, that's a really hard thing. And the other thing, you know, when you have to leave the hospital every day and you don't leave with your baby.

you know, leaving your baby behind. It's really, really hard to walk out that door. Where we were, they didn't have, it was kind of a ward similar to what we have at Holtz. You know, you don't have your own room. You have a chair, which isn't definitely not comfortable enough to spend the night in. So, you know, we did leave her, you know, the NICU nurses are amazing, and we got to know some of them really well, and they took really good care of her. And so...

Leah (36:58.872)

Yeah.

Leah (37:20.546)

Yeah.

Adriane Rodriguez (37:27.207)

you know, we would leave without her for a few weeks. And it was pretty excruciating, but you know, she pretty quickly, after she got through the initial really tough time, she progressed pretty well. The biggest thing that held us up, I would say, is the chest tube. They had to, after you do...

Leah (37:54.09)

Nice that.

Adriane Rodriguez (37:55.471)

After you do any type of surgery in the heart or the lungs, like the pleural area, I'm probably not saying that right, but something to that effect. Any type of heart-lung surgery, they put in a chest tube because they need to drain all the stuff that's in there. There's fluid that builds up, blood, even air. So they put the chest tube in to just keep that area, keep that all flowing so that they don't get an infection.

Leah (38:08.974)

Sure.

Adriane Rodriguez (38:24.351)

So she had this chest tube in and that was really what for us, it wasn't necessarily like a setback per se, but it was what really was like holding us up. So like every day they were looking at the little drain, oh, it's still draining, oh, it's still draining and kept draining. And once that started to taper off and I was like, oh, but there's air, we're looking at her, I don't remember it's a CT scan or a chest x-ray, but they would look at the...

the images and they're like, no, we still see air. We can't take it out. I'm like, can't hold your baby. So that's.

Leah (39:01.118)

Yeah. So these like are huge setbacks, right? When you're like moving forward, how did you handle those things? Right? Like you're like, okay, it's done. What about now? You know, how do you, how do you hold yourself up?

Adriane Rodriguez (39:06.575)

Yeah.

Adriane Rodriguez (39:11.323)

It was hard. It was hard. Well, it's hard because then you start to think, well, is it ever going to stop? Is she ever going to not have air in her lung? Or is it ever going to stop bleeding? And then you just start to think it's never going to get better. Because it's not. And you come in each day with this hope of, oh, today's the day.

Leah (39:32.322)

Hmm. Yeah.

Adriane Rodriguez (39:41.019)

And then they're like, Oh, no, sorry. And you're like, you know, kind of takes the wind out of your sails a little when you're, when you're there and you're, especially like, I guess when you're just waiting for like this one thing, you know, and I know a lot of our preemie moms, it's, it's feeding with them, you know, they're waiting for the baby to eat enough, you know, it's like, almost like, you know, the NICU experience is almost like there is like each baby has kind of like their one thing that, that like.

Oh, and you can just do that one thing, you know, then you can go, then you can go home. And so, you know, for us, our one thing was, yeah, this chest tube that just kept, or this chest, you know, this air, I guess, that was, you know, kind of in her lung. And then it was the craziest thing because they're talking all about this. And then I come in the next day and they're like, they say this, and then like a couple hours later, they come and they pull it out.

Leah (40:08.606)

Yeah. Right.

Adriane Rodriguez (40:35.867)

And they're like, you can hold the baby and she's going home today. And I was like, wait, what? Because like, you just told me this morning and I was like, oh my God. Like, I mean, I was ecstatic. Yes, yes. It was like from one minute to the next, everything changed. So it's amazing. You know, I'm so excited. I'm so happy, but I'm like, but wait, what about the air? You know, like.

Leah (40:42.69)

Ha!

Leah (40:49.022)

So sudden, right?

Leah (41:02.442)

Right, that you're so worried about for so long.

Adriane Rodriguez (41:05.411)

Yeah, like, are you sure? Like, really? You're just, you're going to let her come home with me? Like, she's hooked up to all these things and then all of a sudden, she's not. And they're like, okay, you can take her home now. And I'm like, it's, it's super stressful. I...

Leah (41:19.498)

So what do you think went on there, Adriane? What do you think would have been helpful? Like, it sounds to me like there was a lot of, probably some back, like, thought process that they didn't let you know about, maybe? What do you think?

Adriane Rodriguez (41:25.184)

Oh man, like-

Adriane Rodriguez (41:32.719)

Yeah, yeah, exactly. You know, definitely medical things going on that maybe they just didn't share with us, share with me. I know my husband was pretty in touch with the medical team, but he even was like, what? Like surprised. And yeah, I just, I would have had liked a little bit more warning because it was all of a sudden like, well, where are we, where are we going to take her? You know, I didn't want to take her to the Ronald McDonald House because.

Leah (41:55.639)

Right.

Adriane Rodriguez (41:58.123)

there's too many people there and she's still a fragile little baby and I don't want her to be around a million people that there's little kids, people that are sick. And I'm like, and not to mention, I didn't have a place for her to sleep. I don't have a crib. I, yeah, I'm like, where do you want me to, like, what do you want me to do with this baby? Like, here, take the baby. I'm like, I don't live here. I don't have a crib. I don't have a, I don't have anything. And you gave me no warning. So I was like,

Leah (42:03.19)

Yeah.

Leah (42:12.062)

Right, this is not your home, right?

Adriane Rodriguez (42:27.595)

Oh my gosh, like on one hand, obviously thrilled because I can hold my baby finally. And I'm like nursing her for the first time and holding her and then like, yeah, but you got to go. Like we need the bed kind of thing, you know? And I was like.

Leah (42:43.658)

Let's stay with that moment for just a minute. What was that like to nurse her for the first time, to put her to the breast?

Adriane Rodriguez (42:48.339)

Ehh

Oh, yeah, I mean, it was amazing. But it was not like it was with my son. Like even she was only a couple of weeks in the NICU. But she'd only ever had a bottle and a pacifier. So she didn't want really anything to do with breastfeeding. Like she was like, what's this? Like, you know, it was weird, you know, she didn't

She wasn't like a regular baby. It was like, oh, you know, like, like so excited for it. Like, yeah, she was kind of like, yeah, like, what's this? And I was like, oh man. And I'm like, I need to feed this baby. Like, I just wanted so bad to do it. So I'm like, okay, let me try. It was like, I was like, oh my God, this is that. This does, this is not right. I knew it wasn't right. It didn't feel right. She didn't feel comfortable. But then I'm like, but I need to figure this out because they want me to take her home and she's got to be.

Leah (43:24.098)

Yeah, looking for it, rooting, yeah.

Leah (43:33.048)

Yeah.

Adriane Rodriguez (43:49.403)

eating and I'm like, okay, we have bottles and I have some breast milk. And she was also taking some formula because she was a big baby. You know, she was a full term baby. So she had pretty high, and she was healing from a surgery. So she had pretty high nutritional needs and she needed to, you know, like, you know, they, the, one of the main things with babies leaving the NICU is that they're able to eat enough, right? You know, they don't let the babies go home unless they are able to take in enough.

Leah (44:02.306)

Right.

Leah (44:12.892)

Mm, right.

Adriane Rodriguez (44:16.839)

nutrition orally or however, in order to survive to live. So I was like, Oh my god, you know, like, how am I going to feed this baby? And I didn't really want to give her a formula. I'm being honest, I really, really wanted to breastfeed her. I wanted to nurse her. I, but yeah, I mean, they were just like, I had to figure something out quick. So I did both. I did both. I did both. Yeah, I did some formula.

Leah (44:40.094)

Yeah, yeah, so you did both. You supplemented.

Adriane Rodriguez (44:46.759)

The pumping for me was always not great. I never was really too sick. I did it, but I always felt like I just like, couldn't quite get enough. So I really quickly, I wanted to move away from that because I just, I didn't like it. It didn't, I didn't have a lot of milk. I know a lot more about it now, but it wasn't working too well. I really wanted to try to nurse her. So I worked really, really hard. I had to.

Leah (45:08.407)

Right.

Adriane Rodriguez (45:17.387)

So we basically packed everything up and we got in the car and we drove home to my mom's house five hours. From like, she went from like a NICU net to like the longest five hours, the second longest five hours of my life driving her home. Like, is she breathing? Like I kept with my finger under her nose or in front of her mouth. Is she breathing? You know, we had to, we stopped at a rest stop and I'm like, the second time I nursed her was in the middle of a rest stop on the.

Leah (45:25.08)

Yeah.

Leah (45:31.5)

Right.

Leah (45:39.235)

Yeah.

Adriane Rodriguez (45:45.647)

and Pennsylvania on the highway.

Leah (45:47.798)

Yeah, that's full-time mom right there. That's full-time mom.

Adriane Rodriguez (45:52.847)

It was wild, but you know, she did amazing.

Leah (45:59.298)

So how old is Viviana now?

Adriane Rodriguez (46:02.699)

She is nine, nine and a couple of months, yeah. Oh my gosh, she's amazing.

Leah (46:04.458)

Nine. Tell me about her.

Adriane Rodriguez (46:11.783)

She plays competitive soccer, she dances. She has like this fire inside of her, like this fight, this like, this determination, this resilience, like this, I don't know, like I just say, I say like, I always say like, you know, this little girl was fighting for her life from the moment she was conceived. And that's who she is today. Like these NICU babies are like some of the strongest.

Leah (46:21.612)

Yeah.

Adriane Rodriguez (46:40.939)

toughest, most amazing kiddos you'll ever meet. And I have a funny story. She was three years old and my son, two years older, she was like almost four, three and a half, and three and changed. And they were riding bikes. And my daughter was riding the train wheels, right? And the friend was like, oh, you ride a baby bike. Okay, so Vivi.

She hears it, she kept riding her bike. The next day we get up, and this is summertime, and I come out, they're like, we want to go ride bikes, whatever my kids, right? So I went outside, and Vivi had enlisted her brother to take off her training wheels. She's like, I'm done with this baby bike. She said, her big brother Jose, she's like, take these off. And him being the way he is, cause he's got his own awesome qualities.

Leah (47:18.315)

Yeah.

Adriane Rodriguez (47:37.055)

He's like, oh, OK, yeah, I could take that off five years old. He's like, yeah, I got this. He took the training wheels off. Yeah, he took them off. And that little girl, not even four years old, starts riding her bike in my driveway with no help. I think I held on the back of the seat for a second. And she just took off riding. She's not even four years old. Like,

Leah (47:40.646)

Let me go get my toolbox.

Adriane Rodriguez (48:01.611)

It's crazy. Like, and that's just, that's just who she is. She's just, she's determined and she's, yeah, she's pretty incredible.

Leah (48:02.478)

She's determined. Yeah.

Leah (48:12.17)

She is incredible. And you all were incredible too for, you know, such a commitment and such dedication. If you were...

Adriane Rodriguez (48:18.271)

Yeah, but it's not easy. It was not easy.

Leah (48:28.946)

if you were to have to define it, but what does hope mean to you?

Adriane Rodriguez (48:35.627)

Oh, hope is, you know what? Hope is all I had during this time, really, for me. I mean, hope is just, you know, always believing that, you know, it can be okay, like, that it'll be all right, you know? Just always hanging on to, like, whatever little, ah, little thing it is that, like, keeps you going, you know?

Leah (48:49.646)

Great.

Adriane Rodriguez (49:03.771)

I just, like, that's what got me through. As soon as I found out what happened to Vivi, I like, I withdrew, you know, no more social media posts. I didn't even barely see my friends. I just, I withdrew from everything. But like the one thing that kept me going through this whole experience was hope, you know, just that hope that, you know, that she, you know, that she would be okay, that we could get through this together as a family, that, you know, that, you know, that...

Leah (49:26.826)

Yeah. Right.

Adriane Rodriguez (49:33.331)

that it could be okay and that she could live. I just always had that hope inside of me, that faith, just that something inside of me that just said, you know what? Like, she's going to be okay. I just tried to hold onto that. For me, hope is huge. Just always trying to have hope no matter what, no matter how much it seems like you can't keep going.

Leah (49:34.914)

Yeah.

Leah (49:47.48)

Yeah.

Leah (49:54.11)

Yeah.

Adriane Rodriguez (50:01.955)

You know, like I can't have one more appointment. I can't have one more disappointment or one more. I don't know. You just you just have hope that if you keep going, keep putting one foot in front of the other one minute at a time, that, you know, you'll get there. Somehow.

Leah (50:13.472)

Right.

Yeah.

Leah (50:21.514)

Yeah, I mean, it's not. What would you share with some words of wisdom that you might share with someone who's in the NICU now?

Adriane Rodriguez (50:21.904)

It's not easy though. The NICU life. It's not easy.

Adriane Rodriguez (50:35.431)

Oh, I think mainly just like, you know, take it one day at a time, one day at a time, one moment at a time, you know, don't try to get too far ahead of yourself or, you know.

Just things can change so quickly. And yeah, just try to just stay in the moment. Whatever gives you strength, lean into that. Whatever fills you up, you know, you got to take care of yourself in the middle of all this. So whatever it is that like fills you, whether it be prayer or your faith.

Some people like to journal or walk, you know, if it's your friends, family, you know, like if you meditate, you know, if you knit, you know, whatever it is, whatever it is, it fills you up. You know, they have that saying like you can't pour from an empty cup. And I just, it's so true. Like, you know, you got to, you got to try as hard as it is and as guilty as you may feel when you, you know, take a few minutes, you know, to sleep that extra five minutes or.

or whatever it is, you really just take that time for yourself and you'll be able to be there for your baby even more if you just take good care of yourself. The other thing I was thinking too is ask for help. People want to help, they really do. When you have a baby but your baby's not home, your baby's in the NICU, they don't necessarily know what to do.

but there are lots of things they can still do for you and let people help you. If you have other kids, let them watch your other kids or pick them up from school. If they want to set up like a meal train for you. Like I know a lot of like mom's groups or church families, like they'll set up, they'll feed you, give you a ride, clean your house. Like they can't help with your baby, but they can help you.

Leah (52:17.002)

Right.

Right.

Leah (52:37.906)

Yeah, this is the time to receive. Yep.

Adriane Rodriguez (52:45.035)

and they can help your family. And I know it's hard to ask, but let people help you because you can't do this alone. Like nobody can do this alone. Everybody needs people to support them and be there for them. And the NICU can be a very lonely place, but let us help you.

Leah (52:53.501)

Yeah.

Leah (53:10.838)

Let us help you. Yeah, Adriane, this has been such a beautiful story and I'm so, so grateful that you shared it with us. If you're out there right now, sitting by your baby's bedside or driving back and forth to the NICU or perhaps up in the night pumping every three hours like clockwork or in one of those family meeting rooms waiting.

for your baby to come out of surgery. Adriane and I absolutely want you to know that you are not alone. And we look forward to sitting with you again next time. Take gentle care.