Sue Pereira and Jason Pereira

00:02 My name is Susan Pereira. I am 39 years old. Today is January 10th 2020. We're currently in Santa Monica, California. I'm here with my husband Jason Pereira.

00:17 My name is Jason Pereira. I'm 44 years old. Today's date is January 10th 2024 in Santa Monica, California, and I'm here with Susan Pereira my wife.

00:36 So we're here to talk.

00:40 Today and share our story about our son Leoni.

00:45 And the first thing I wanted to ask you was what is a micro preemie to you? How is having one? I had no idea what that was, you know prematurity in birth was definitely something you heard about but knowing all the details and stuff was definitely is not something that I knew people defined differently, but typically a pre-mixed a micro preemie is a child born less than 28 weeks gestation and weighing less than $1,000 and that's about 2.3 lb

01:20 And

01:22 Usually when you have a baby that early they're normally taken into the NICU right after they're born. So my question to you was did you ever even knew what a Nicki was prior to it? And what does NICU stand for? Do you still remember you're so when we found out we're going to be parents. Send just kind of going through the

01:49 Through the process of being on learning about the hospital and and your doctor visits and stuff. I guess there was going to be a point when we were going to learn about the NICU but we never did but we did find out later that a NICU is the ICU for for babies that are born early and so on.

02:16 Yeah, we just

02:21 We just tried to

02:25 So when we we found out about the

02:30 That you were all went. When we had your first doctor's appointment. You know, we are not your first doctor's appointment. But the what was the the doctor called your got your gynecologist? Yeah, and so she you know, she told us about having a

02:51 You know what she is when she felt your stomach when you when you were pregnant.

02:56 She felt you were really tight and that you

03:00 She was concerned that the baby was you know was was going to start hurting you and cuz he was you were getting really tight. And so she started telling us okay, you know, you're you're getting into your

03:17 Into your

03:20 Third trimester going into the third trimester.

03:32 You're going to have to you may start getting these fake contractions called Braxton Hicks contractions and you know, don't worry about them. But if you get any bleeding or spotting then

03:48 You don't give us a call and we'll have you come in so.

03:53 Yeah, so that's that was something that we were going to kind of be aware of.

04:00 What did you think about when?

04:03 You you found out you were going to become a mom. We found out that we were a walk when I found out I was going to be coming along those kind of shocking definitely it was something that we always planned on. You know, I mean, we both always seem to say that you know, we will be okay without kids then, you know, we traveled a lot we went to a lot of places and stuff and you know, we were older when we felt the pressure we still come to the pressure of our parents. And so when we decided that hey, you know what? Let's just try when I found out it was kind of shocking and it was kind of like reality smacking me in the face, you know the change of our life.

04:52 Yeah, you know when you asked about the NICU I started thinking about.

05:01 When we did end up in there and all the alarms going off.

05:08 Are are the in the delivery room and

05:13 Just want to know when you were going to give birth and

05:19 It was it was a frantic time in there, you know and

05:27 We just we weren't sure what was going to happen. We had that doctor from the NICU come in and she had the sweetest voice of and in the sweetest or about her and but the things that she was telling us that was going to happen. We know what was going to happen was you know, that our child can come out deformed could come out with their skin translucent. Do you know that they may not survive the birth and so they needed to do everything they could to

06:02 To make sure that the baby stays in you as long as possible that every second and every minute counted and so

06:10 You know when when she did, you know, she was telling us all these things and we were just like still numb to the fact that our baby was coming early.

06:21 And so

06:24 When when when he did come?

06:29 He was the first thing I heard you was crying and I was like, oh

06:38 What did I do?

06:42 I get it, you know so he was crying and I was like, oh, well, he's just you know, he's alive so then

06:49 We were out I was I was nervous because right when they he came out the doctor was going to hand them to you. And what did why don't you talk about what happened there? Cuz that was a profound moment for you. We were told by the neonate tologist that as soon as the baby came out. The NICU team will be coming in to take the baby because most likely he wouldn't be breathing or there could be a lot of different issues. But I ended up giving birth to him sooner than in NICU team was able to arrive cuz normally they will arrive during the times of as soon as the baby comes out. They would take the baby and do the necessary procedures, but the Leon it came out a lot faster. So as soon as I only came out, you know, he was crying which was a great signal for us that he was you know, that he was alive coming out the doctor because of Nick

07:49 The team wasn't there yet. The doctor ended up had was moving towards to hand me the baby. But as soon as it halfway through it the NICU team arrives, so she turned around and you know, how did the baby over to the team and at that point? It was just kind of like I think I don't I still remember feeling kind of numb not believing that all the stuff was happening, you know, and I remember looking over at you and then as soon as they took the baby, you know, they started doing the procedures on him adding all the different things in the alarm started going off, you know, and we could no longer here and leonie crying anymore. So I remember looking over to you and telling you hey, you know go over there to see what's going on. And I remember you gave me this look so, you know, one of the questions I had was you know, what was your thought when I'm looking at you because obviously I couldn't walk over there to see what was going on. How did you feel and you know,

08:49 The events that happened after that, you know, every time we talked about that and we tell that story it's such a pivotal and intense moment because truly, you know, it's it was start of a miracle, you know that we had, you know from the time I got pregnant, you know through the whole process of me having him early and all the stuff, you know each step up until then has just proven that you know, we have one special child we do when the doctor told me that

09:20 You know, they would never were trying to keep the baby in as long as they could and then when they said Oak the baby's coming.

09:28 Or actually they were preparing everything and they were putting on their blue suit and blue sheets and you know, everything was getting covered in ice at 8. I don't know where to stand or what am I supposed to do and they were like

09:42 Oh, you're supposed to stand right here and they put me right next to your hips. And I was like I thought it was like in the movies where I stand behind you and hold your hand and they're like no you stay right here and I was like, oh my gosh, this is and then of course when the baby came

09:58 Man is it just happened so fast and you just like kind of surfed right out? And yeah, I remember the doctor. It was like just inches away from your hand and then boom she turned away. You had your hands stop.

10:11 And it was just so frantic in there. The energy was just Electric in there with the staff the NICU staff went on the incubator and all these alarms and beeping it and and then things going on and I just did not want to be in the way of anybody. I don't want to cause anyone to forget to do something you don't cuz I was our son's life on the line and they're just like yelling out, you know, 30 seconds of life one minute our life 2 minutes or life. It was like every minute was It was kind of weird. Just anyone like

10:48 I'll see what's happening with our son and I was just likes Frozen stuff and you're like to go see what's happening with her son cuz he's on the other side of the room and I start walking over there and the NICU doctor saying talk to him say something and I start calling his name. I said Leon.

11:11 And there was like a little reaction and the doctor was like keep talking keep talking but all the alarms and stuff are still going off and then the nurse is an end and support staff for still yelling out commands and stuff. And so there was I just started singing and there's a song that I used to sing member when every night when you were pregnant with him, I would seem to your belly that old someone him forfeit. I and I just started singing it. You know, I just said 5202

11:57 You know Nann low phosphorus.

12:15 And

12:16 When I sing

12:18 He turned his head and looked up.

12:22 And I was like, that's my son in the nurse the doctor grab my hands you put it on him cuz I keep seeing keep saying I kept saying and then he started breathing and all the alarms to shut off in the whole energy of the room just settled down.

12:42 And and he was able to breathe. He started breathing for that moment.

12:48 He was breathing and it was a magical moment, you know for a little family.

12:59 And what were you thinking when all this was happening for me? I was just kind of I mean I heard stuff going on but I really couldn't hear what was going on, you know, but I knew in my heart and I'll let you know everything that could be done for our son would be done. And you know, I think me as an over-thinker all the time with this is probably the one time in life where I had no control over anything, you know, none of it. So probably for the first of my life, you know, I was going through something where I couldn't there's nothing I can do to change anything that was going to happen to it except for you know, whatever the instructions I had were for us to do properly. We did, you know one even when it was

13:45 You know because we took him to the Irvine Kaiser, you know, and because they at the time didn't have a level three NICU, you know, we were already told that after we gave birth to him, you know, he would have to be transported and just out of my mind through the whole process as well too. And you know after they took him away from us to take him over to the NICU area and get him situated and stuff. And I mean, I think it was probably about an hour before I actually even was able to see my son or even touch him and even seeing him with all these cords and you know, everything just attached to body it was pretty intense. But at the same time, you know, all I can see was just you know, beautiful little boy that you know, we had and everything after that, you know, it was just definitely

14:44 The growth in both of us, you know, I think we both kinda grew up even though we were in our thirties at the time. We were still traveling the world doing things, you know, even when we found out that we were pregnant. We had a trip plan we had plans to go to Asia and to go see your grandfather Vietnam go to your birth place in Hong Kong go to Thailand and when we found out you were pregnant remember when we when we found out you were pregnant was it was a tragic time in our life with my uncle Pele passing away and we found out the night of his

15:27 But his funeral service that you were pregnant and so it was hard to rejoice in that but we have this Asia trip planned and when we told your doctor when we went to our first appointment, she said oh, well you can go on your trip, but you'll be in your third trimester and if the baby comes early

15:49 You'll be subject to the medical care in whatever country you're in. So just consider that when you guys home, you know, take your trip.

15:59 And of course we changed our trip to go up to Seattle and Vancouver, but we can't the the day that he was born was Wednesday, right? And we would have still been in Vietnam at that time.

16:22 Wow, and so on so this so it's a when he was born and you know, if he's connected to all these wires and in tubes and stuff that just started that was the beginning of a long journey and into you know, his going through the three NICU locations us staying at the Ronald McDonald House up in Fontana and

16:52 Can you talk about?

16:55 A little bit about all those nights and days in the NICU and

17:00 Some of the things that were going through your mind matters constant machines and you know the blood pressure to the breathing and you know with our son he did okay at the beginning but then they had to intubate him. So he was pretty much breathing through a machine. So all those sounds learning it not knowing I mean there's a lot to know and even a hundred total days of being in the NICU, you know, it was just it there were days that were tough, you know, even from the point of when I went back to work while he was still in the NICU and then going there after work to see him and then know we were blessed enough that we had amazing nurses at the facilities. We were at that we could trust them to be with our son and they would push us to go home to get

18:00 That's because they knew that you know, they were able to take care of them and stuff like that. But you know being in the NICU the days where you're just sitting there in the dark because that's the best for the baby had to do then was dark. He's in an isolette and we just sat there staring at each other, you know moments of support moments of frustration with each other. I mean change our relationship as well to I mean even to the point where he came home, you know, you are the main care taker of him since you know your

18:38 What you did for a living allow that to happen and even the time that you spent there and you know, they always called for women, you know, the postpartum depression art of it, but I think you went through it a little bit. You know, there was a tough time for me just changing having to change careers. That was not what I had planned and I had a tough time with it and I just felt like this is not the life that I chose and I kept fighting it but at the same time caring for your son this

19:17 This being that came from you and and and from you and we made this together and just seeing him smile and grow and progress and that counterbalanced a lot of my, you know, negative feelings and and and bit of depression and and and stuff and as he grew and as he improved and got better.

19:44 I also you know started to heal, you know, and but yeah, it was, you know, going through all his therapy and his development. You know, I always kept in mind with that Don NICU doctor had told us that it could be up to five years, you know that something could surface, you know, some of the complications that he may have development wise, you know that delays, you know, they can you know, you probably won't see things up until five years. So that was always like a milestone for me and you know now that we just had his 5th birthday, you know, and it's and it's been a blessing and especially with all of our family and friends and all of their support.

20:30 I do want to ask you, you know your thoughts about.

20:34 Kind of going back into the NICU you do remember the the surgeries that he had in the phone call that we got that one night and we're staying at the Ronald McDonald House. So with having a mean we everything was pretty much explained to us. All the issues all the things that could happen. And I think he was three days old when that happened and I remember he know you that Dreadful men late call at night and you know part I remember prior to his leaving we knew something was going on, you know, his stomach was not that and you know, we are unsure about it. But you know, they said don't worry. Let's just go, you know go get dressed and come back in the morning. And I remember when we got that call and because he was born so early, you know, one of the big is our biggest concern was the brain hemorrhage that he had when they did the scan it showed that he did have that end with that any

21:34 Of procedures or anything like that could worse than that. And I remember that being stuck in my mind when I got the call. They're not sure what happened but his stomach had enlarged and if he's turning blue, so they knew that there was some sort of internal bleeding and I remember them asking, you know, you getting you need to give us a decision right now cuz we're going to have to go in and do emergency surgery member looking over at you and you were just saying like what what and I just gave you this look and I remember telling them let me just call you right back sitting up and having the conversation. I remember that feeling and I don't even know what to tell you the truth. Like I remember looking at you and telling you what happened, but I never

22:20 Really asked like hey, so what do you know? What should we do? You know, it was always just you know, but but but his brain but I prayed about it and then we said okay we got to do it. You know, I just felt led that that was the best decision. It was the lesser of two evils and you know, and so, you know, we made the decision and of course when we got there, they brought the operating room to his room and saw the whole thing was cordoned off and Amanda the NICU life. We basically threw all the 200 days there the four surgeries that he went through.

23:02 We basically became honorary nurses what we hope we finally left there in and checked out of there and it was a it was a scary feeling. Meals with feeling of relief but is also a scary feeling remember that first night that we only brought him home, but we did at our house and the fact that you know after all through the whole time he stayed there he still came home the day after his original Duty that we had to bring him home and out with oxygen oxygen tank and them coming to the house then, you know setting up the tank for us and leaving us 50 foot cord so we can walk this baby around the house and I just remember when he got discharged for like no machine, you know while we're in the hospital. I'm even up to the point. He left he was do you know still hooked up on the machines? I just remembered the

24:02 Feeling and everything and just we brought him home. We just pretty much left the light on and just stared at him the whole night jumping at every movement that he was making, you know, it's hard to believe that he just turned five.

24:23 Yeah, now that's 5 years ago and even through the five years, you know, we always said, you know that 5-year Mark, you know, the 5-year Mark and you know, thank God and the blessings we've been that he pretty much is showing no signs of any of the development developmental issues that they thought he would go through, you know, and I believe you know, I don't know about you but for me, I'm always going to question. Is it because you know anything that he does wrong or you know, people always tell me give his kids break. He's only five, you know, he's not going to be able to do this or that or see their snap. But I hope in the back of my mind that I don't always hell is this because you were born early. I know this our little

25:06 Micro preemie born a 2.2 lb 14in long has grown to just be this amazing beautiful wonderful kid and you know, we always used to joke and set it in a while but like, oh all the we hope that he just stays a good kid because I will be doesn't become a bad kid cuz all everything that he done that would have been bad. Do you know his bad stuff like that? So he's already caused enough stress on us that the rest of life should be a piece of cake for us. We hope

25:54 So

25:58 Was there anything else that you wanted to?

26:00 Say about leonie now. It's just that you know, we

26:05 About him he is definitely a miracle, you know, in terms of who he has his personality. He just has an amazing soul. And you know, the one thing about him is that he's completely change and he made us grow and good ways. You know, I believe there are parts that of me and I see it in you as well that

26:29 It's grown and so much better because of him because of the things that I believe we went through with him.

26:37 Was there anything about this experience?

26:42 That

26:44 You haven't told me about that. You would want to tell me now.

26:48 I think

26:51 Thank U Back. Now, you know, I I joke about it in my mind is just like, you know, when we said we didn't want kids, you know, we should have stuck to it because all of that but you know, that's just joking around and stuff, but he's definitely and I would not change it for the world and stuff. I just think through this whole experience side. We both just took it one day at a time and you know, we look back on the moments that were amazing the moments that were terrifying, you know to the moments that relief as he grows so, you know, but in the end it was quite the Journey of the story, you know for us to share with him when he grows up, you know, we shared it with so many people I mean with social media, it's amazing, you know, there's a good parts and the bad parts of it. But the one part we had was that we had, you know hundred and thousand people praying for their child throughout the world through this, you know disconnect.

27:51 So for me no matter what people always say about privacy or this and that I always feel that definitely that was one time that so, you know that social connectivity. I truly believe help our son people sending cards and money and phone calls and texts. I mean just all of the world people commenting even today we still run into people like, oh my gosh, that's him. That's the void. That's the pre. That's the micro preemie all that's lay on it all look at him. Look how he's grown. And it makes me feel so good to still run into people that I haven't met yet and and they tell me about his story that they heard about or they seen on, you know, Facebook and and stuff and we're just so thankful and grateful, you know for all the support and all the stories.

28:44 I think I do have a question. So when they prepped Leoni TV ready to be transported to Fontana you cuz I was still in the hospital that left back in 2 hours after I gave birth to him and you were the one that went with him on that ride in the ambulance from Irvine all the way to Fontana. Like I don't think I've ever asked you. What were your thoughts was there any conversations with the people in there or how I mean, do you remember how it felt at that moment or anything that came to mind for you?

29:19 I felt half-dead. I swear I was just every

29:24 Ounce of available energy that I had was just gone from me and by the time we got in that and I mean just seeing them prepare him prepare his body in this mobile incubator. The amount of wires that were plugged into him was just anything beyond comprehension. He was so tiny and had all the support and

29:48 I just couldn't believe and I just stared at him. You know, I could see him cuz it was a clear case over him.

29:54 I don't remember any of the conversation. I think there was some small talk questions, but they had to have a doctor on the ambulance. That was when things were waiting for and and an RN and I'll RT so they had to have that full support traveling with us on the in the ambulance and you have our whole team just moved out to Fontana and you talk about what happened with you after we left after you told the doctor, you know I said, hey, my son's being transported. Do you know is there any reason for me to have to be transported I go what our options are the doctor said? Well, you know what, you know, do you want to be transported or whatever and I said no, I don't I don't want to be transferred to the hospital cuz it means I would have to be in my own room but it is an option to release me I go. Is there any reason why I have to stay here? Is there a time frame and he

30:54 How much is a cronut technically and legally know there's not so it's really up to you and if your body is able to function. So there's a few things that you have to be able to do prior to me releasing you. So I mean, I bugged her and loved her and think it was about six hours after I gave birth. I was already checked out and one of my best are best friends came to pick me up. I went straight home packed our luggages and she told me straight out to Fontana and I still remember when I was walking down the hallway to the NICU after they let me into the door and I had a backpack on me a pretty heavy backpack and then there's crazy what you're the mom. What are you doing? Did you just give birth then? I just you know what? I think that was one of the things where everyone was always so shocked about us is that we just carried on like we had to do what we had to do. So.

31:49 This one memory just popped into my mind and I. It's just it's always so funny and I'll bring it up to you every now and then, you know, you're Vietnamese and Chinese and I'm someone little bit of Portuguese and you I remember you asked me this was long before Leon. It was even a thought in our minds, but you asked me like there. Is there ever been like a Chinese or Vietnamese? Someone mixed person and I saw it and then I went to our friend's barbecue and I met a guy or you and then I think you came later cuz it was it was a friend's funeral dad's funeral and I said that guy that guy right there, he's he's being amazing someone and you looked at me like, oh, no, we're not having kids.

32:36 But now you we have our son is adorable. He's handsome and everyone just adores him and I think it's a pretty good mix.

32:48 Is there anything else you wanted to say about our story our little miracle and he I look at him. I don't know about you, but I look at him everyday and just wonder like after everything he's gone through, you know from the his colon Perforating 3 days before, you know, three days after he was born to having that emergency surgery to having the PDA ligation surgery to close the valve in his heart to his eyes his when he had the his colon perforated. He had the ileostomy and that it put that on him and then close enough, you know, just do all of that and to this day we always say that his pain tolerance and his ability to is amazing cuz I mean even at what he was almost one or just turned one and he split his lip open and we had to take him to the ER just everything and you know, we're always say that we are blue.

33:48 Because up until now so far. He is not throwing a tantrum like those kids do so.

33:56 Yeah, I remember last year when we took him to someone and he got his first haircut and on the Little Rock Island of new vivea with the one palm tree on that Rock Island, and it was such a special moment for our family and my mom said a prayer and kylo for our chief set a little speech and we all sing a song and then we cut liana's hair for the first time and a half because of the traditional someone.

34:31 Custom of cutting a boy's hair at seven years old has your mom and my mom kept bugging about

34:51 The little island outside of the village that he was named after and the you know, the story behind that island is definitely another story to be told but it's the shows of strength and stability of something that has the willpower.

35:08 Remember that night when the first night we spent in Fontana at the little hotel and I I was doing my drawing challenge at that time.

35:19 And where I was drawing something everyday and I almost stopped and I was just crying at that desk and I think you were showering and I said no I got to keep drawing and that little island is what came into mine to draw. So that's what I drew the night of his birth or the night after his birth. And was that Little Rock Island you've ever had with the single palm tree in it was just a reminder for me and symbol of the strength and resilience of our son Leon there until something special is a lot of special memories came out of

35:56 Carson being born what week are a little miracle Leoni do Pereira. That's right.