Divya

The nurses always used to like joke like these two boys are so in sync with each other like, one of them will alarm than the other alarms. One of them will alarm the other alarms like they would pull out like their, like one of their tubes and then the other one would pull out the same exact tube. And so they always had this like connection and it's really special.

Tanya Tringali

Are you pregnant or a new parent looking to ensure a better postpartum experience? Or are you a birth worker looking to improve your postpartum care skills? Check out thriving after birth, an online self paced course by me midwife and educator Tanya Tringali. It's 10 and a half hours of video content featuring experts in lactation mental health, pelvic floor health, pediatric sleep issues. You also get worksheets in a workbook as well as options to have a one on one session with me, sign up and Mother wit maternity.com/thriving And let's improve postpartum care together. Hey, everyone, I'm your midwife Tanya Tringali. Welcome to the mother wit podcast, a show about the issues we healthcare consumers and providers face every day as we interact with the medical system. We'll talk about its blind spots, shortcomings, and share strategies we can use to feel seen and heard no matter which side of the table we sit on. Today's episode is about infant loss. If you're not prepared to listen to the story today, please skip it. Take care of yourself and reach out for help. If you are in need. You can visit the Resources page on my website or see the show notes attached to this episode. My guest today is Divya Shenoy. She came to me on recommendation of her friend Kristen Ross, who you've heard on season three episode one, when she shared her story of exclusively pumping for twins. Divya was also pregnant with twins. She came to me for postpartum care and started early because she knew that the risk of preterm birth was increased in twin pregnancies. Shortly after we began working together around 23 weeks, she learned that her cervix was shortening and that she required a circle wash. For those of you who don't know sir collage is a stitch that's placed into the cervix to help it stay closed and keep the babies inside where they belong. Unfortunately, a few days after her circle as she was placed, her water broke, she spent the next couple of weeks in the hospital so that she in the babies could be monitored closely for the right time to be born. We actually had our first session while she was in the hospital and still pregnant. On January 14 2022, she gave birth to two beautiful baby boys are in an RJ. They weighed less than two pounds each. She knew that what was to come was going to be difficult and likely not look like anything she'd seen others go through. But I want Divya to tell the rest of her story on her terms. Divya, thank you so much for your willingness to share your story today.

Divya

Thank you for having me. I'm really excited to be here. I know. We've been through a lot together actually, even in a short amount of time. And thank you for that introduction and kind of sharing a little bit of my story. I'm excited to tell your listeners more about what we went through as a family and hopefully be able to help others in the future.

Tanya Tringali

Yeah, well, that's definitely why I wanted you to do this. And I knew that from early on. And I thought you'd be somebody who would be willing to do that. And of course, I waited a good long time to ask you to do that. But I'm so grateful. And you've been, you've been open, and you've shared your stories and other ways and in other platforms. And I'm sure that'll come up in the story. And there are certain ways that you've shared your story that I want to make sure I link to our show notes so that people can support you and your efforts as well. So I'll make sure to take care of that.

Divya

Thank you.

Tanya Tringali

Awesome. So okay, I gave a little intro just so you wouldn't have to backtrack that much. Introduce yourself and tell us whatever it is that you think listeners should know about you as just a human being in the world. What about your family? You want people to know before you pick up the story where you feel it's most appropriate.

Divya

Yeah. So I as Tonya already mentioned Divya Shenoy. I live in Los Angeles, but I'm originally from New Orleans, and Madison, Mississippi, so not really from here. And then I spent a good number of years in DC. So what's unique is I have kind of a network everywhere in the US and that comes into play as I talk about my story and kind of what we went through and who my support system was. So being in LA I'm lucky to have some family here. My my husband's originally from here. But so I think for us, like one thing just to notice, like we didn't really we were like we're we'll have kids, and then it was like, Oh, you're having twins like you're not just having one kid you're having multiple, and I went through like the gnarliest pregnancy like I was sick all the time from like, probably six weeks, we actually found out the day before we left for a trip to Hawaii. And I was sick the entire time. I was in Hawaii all six days. And then as I came back, I was sick every day. And so it was definitely a tough pregnancy. So if there are people that are like struggling out there, I'm happy to talk to you about what I did, how I handle it, or just like commiserate with you. Because it was tough. But then just everything we went through afterwards. Just kind of put us on the path that we are now and we're lucky to have a beautiful son home Arvin he is almost a year old, which is insane. To me. I like when people say like Time flies, and I'm like, Oh, whatever. No, it really does. I don't know where time is gone. And as you mentioned, tiny, he was born less than a pounds. He was one pound, 11 ounces. And Ajay was one pound, 13 ounces. And Arvind is now 16 pounds, eight ounces, which is like insane. To me. It's like carrying around a dumbbell everywhere. So we're super lucky. We're super lucky that we have amazing friends and family. And I definitely want to talk a lot more about that and my support system, because I think it's really how I got through everything that we went through. But yeah, I think I mean, in terms of, of who I am as a person. I'm a first time mom. So that's exciting and scary. And for all the other first time moms out there, like, I know what you're going through it you never feel like you know what you're doing and that's okay. But yeah, I mean, that's that's kind of me.

Tanya Tringali

Isn't it something to be a far enough on the other side of this to say with such confidence what you just said, like you just told the world, you're not going to know what you're doing. And it's okay. But think about all the time we spend feeling that way before we know it's okay. There's such a path to go through to get there.

Divya

Yeah, I mean, I have two of my closest friends shouter, Amy and Emily, are both either have a newborn or are going to give birth in the next month. And I have told them many times, I have a document for them called unsolicited advice, because we all know, like, you want you want advice from people, but you want advice from the right people. And so we'll talk about that during the episode too. But I found a lot of a lot of people, they'll be like, Oh, do this. And it's like, I don't think we're going to do that. But then, you know, I think it's a really cool opportunity for you to be able to help your friends and your family. And honestly, for me, it's like, it's even bigger than that. Because I had so many people outside of even my tight knit network, who were like giving me advice and helping me and that I found amazingly helpful.

Tanya Tringali

I'm taking little notes to make sure that we get back to everything, because you've talked about support systems and unsolicited advice. And I'm so interested in your unsolicited advice, that this is a platform for you to share your unsolicited advice. Okay, so getting us back to the beginning. And I'm not sure if this is exactly the best place to pick up. So please tell me if I'm wrong. But the first thing in terms of a timeline and order of events that picks up from kind of where I left off in my introduction to you that I recall, and I think has merit is a brief mention, or as much as you want to say actually, about the care you received in the hospital, and kind of through the lens, because what I remember most is that you felt one way about the care you were getting when you were still pregnant. We call that the antepartum unit and hospitals when somebody goes in, but they're not in labor, and we're trying to keep them pregnant. And the care really changed as soon as the babies were out and you had a different experience. Can you talk a little bit about that?

Divya

So I as you mentioned, I was in the high risk l&d unit for about three weeks. And that was when they were trying to keep me pregnant. So I was going through everything possible. And I had an amazing OB who was just like, the most supportive human being she came to see me every single day she did everything she could to keep me keep these little babies in me. So I was on a mag drip. I had steroids to help their long growth, everything like everything under the sun, the nurses day and night shift were so amazing. And my husband was with me every single day. He spent every single night with me. And they were also amazing to him. And they were just like, so wonderful. They took care of us. They really like one day. My hair was just like our rat's nest like it was so gross. And one of the nurses like you want me to brush that because like she knew my husband, she knew my husband couldn't brush it properly. So I got my like tangled teaser and she sat next to me in the bed and like brush my hair out and then I showered and washed it and it was like just nice to feel like a human being you know like living in the hospital is not ideal. And I'm you know, I'm sorry for any way that's had to do it even longer than three weeks. It's tough like you don't have a normal life and a routine but...So that was like, just during that time, I actually did feel somewhat normal though, like it was like, we kind of started to get ourselves into a routine of like, this is what's going to happen, we started to get to know the nurses really well, because they would come in all the time to monitor the boys. We got to know like the Environmental Services staff, so the person who was helping to clean our room, the engineering staff who was fixing things when I inevitably broke like the paper towel machine. And it was just really nice. It felt like, Okay, we we like have people that we know we're being cared for, we're being really taken care of. And then I went into labor in the early early morning of January 14, and then I went into postpartum afterwards. And my whole labor was like, obviously, it was challenging, it was very scary, it was an emergency cease action. But when I left and I went to the postpartum unit, I will say, it was tough, like, especially not having babies with me. I did feel treated differently. I felt like I was just like, put in a corner, I did get a very large room, which was really nice. But like, I was put in a corner, and then I remember one time, like, I didn't get water for like, a long, long time. And finally, my husband was like, I'm just gonna go up and ask them to fill up the cup at the station. And I was like, okay, and I understand I know that they're like, overworked, you know, what's going on. But it just was really tough. And I think for me, like, I was just going through so many emotions, you know, you were actually the one that pointed out to me that, like, you had a traumatic birth, and I was like, Oh, shit, I did have a traumatic birth. Like, I didn't think of it in that way. But to not have that support in that care, it was tough. That being said, like, the other part of that is that my, my sons were in the NICU, and I got to see the way that they were treated and how amazing, amazing, amazing the staff was. And so I think for me, it was like, I know I needed to get through that postpartum time and honestly, stay in it as long as I could, because it was the closest I was going to be to my son's. But for me, like, I was hurting and like I would be in pain, but it was also like the motivation of like, gotta get up to the NICU. Like there's no option. So the other thing that I think was really tough for me, I think a lot of moms can relate to this, once they've had a baby and been in the labor or the mother, baby unit, or postpartum, whatever they call it is the pumping aspect. So I remember being like, I know I need to pump. Because Kristen, my muse, Kristen has helped me with so much. And you and I had talked about this, like I was planning to pump like, great. They literally were like, here's a pump go. And I was like, What do you mean, here's a pump go, what do I do? I don't know, like, where do I put these? Like, I don't know whenand and like that was I was like, Holy crap, I have no idea what I'm doing. And so the next day, I talked to the lactation consultant. But again, no hate no shade to them, but like they're busy, and they did not have the ability to support me as an exclusive pumper. At the time. I felt like they focus on the moms with babies there that were nursing. And so that was tough. And it kind of, in the moment, it really didn't help. I was already in a very challenging headspace. It did not help me to feel like I didn't have people that were, like, knowledgeable enough to help me in the actual unit. And that was tough, for sure.

Tanya Tringali

And that's that's a real shame. For reasons beyond I think what most people are thinking about when I say that it's a shame because preterm babies benefit from human milk. So much more than even full term babies. And so knowing how valuable that human milk is to preterm babies, you would think that they would be all over you wanting to help you get your milk out of your body and get an adequate supply for those babies.

Divya

Yeah, exactly. Yeah, it was, it was tough. I mean, at some point, I decided once I had gotten home, I decided to seek outside help. And that was incredible. I use a company called my nursing coach that's based here in LA and they came out to I kind of told them like I had a unique situation because, you know, I don't think they typically work with exclusive pumpers, they like kind of do a mix of both and don't quote me on that I might be wrong. But for me, I just had a unique situation. And they came to me like literally the next day, and we're like, we're here to help you. And that was just that was what I needed. Because as you know, like I needed to start establishing a pumping schedule and then also knowing okay, I've got to be in the NICU. Like how do I balance that time? And that was it was just so nice to have somebody sit with me one on one, and help me do these things and try to help me understand what's going to make my life easier. How am I going to be able to do this in order to benefit my children.

Unknown Speaker

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Tanya Tringali

Tell us a little bit more aboutwhat it was like as you adjusted to a life that involved pumping a lot and navigating between Well, obviously it's, you know, the first few days you were in the hospital, I guess you probably only stayed for days, I'm guessing.

Divya

Yeah, I think I actually think my OB snuck me in a fifth day, which was really nice. I remember her being like, I don't want you to leave yet. And I'm like, I want to get out of here because I told you the way I was being treated. But then it was like once I left and I had to like physically get myself back to the hospital. I was like, oh, man, thank goodness.

Tanya Tringali

Yeah, that's exactly it. It's like, it's once one side has a set of burdens. And the other side of the equation has another set of birth exact. So you get home. And suddenly you realize, oh, my gosh, I have all this pumping to do. And I'm either at home and not near my babies or I'm in the NICU. And I think I recall that you struggled to figure out how you could pump or could you even pump while you were at the hospital, which seemed kind of absurd to me. I remember really struggling to understand why that was so hard. But tell us a little bit about the challenges of of beat going back and forth and trying to fit in the pumping and all of that.

Divya

Yeah. So it's kind of crazy now to think about, like how much time we spent either in the car or at the NICU. Because we spent a lot of time and so for me, I your listeners don't know this, but I am like very, very type A, I live on a schedule, I live on a to do list. I am so task oriented, like this is just how I am. So for me, having like no sense of anything, never knowing what was gonna happen never knowing like even with the boys like, you know, okay, were they going to have to have a blood transfusion, okay, that changes everything else that's going to happen. And they try to be on a schedule in the NICU to but you can't control what's going to happen with your little ones. Like it's just they do what they want to do. And so for me, it was trying to establish like, Okay, I'm gonna pump every especially in the beginning, when I was trying to establish my supply. I tried to say, Okay, I'm gonna pump every two and a half hours. And that was I was on a very strict schedule. And I had to literally center my life around it. So if I was going to need to pump, I couldn't be in the car, because at that time, I didn't have any sort of mobile pumping option. And I wasn't comfortable, like I wasn't comfortable pumping in the car, because like, your boobs are out. You don't know that yet. You know what I mean? Obviously, you've just given birth and all that stuff. So it's, you're one level above what you used to be with your comfort, comfort, but I still wasn't there. And then when it came to being in the NICU, the reason why it was tough to pump there is there was a million things going on. And I'll try and share a picture with you so you can show it to your your listeners of like what our room looks like, but with two giraffe units, which is what they called, like, kind of the area where the babies are. They were huge. They took up so much space and there was always two nurses in the room. It was just like chaos in there. And so for me trying to establish my milk supply also not knowing what the hell I'm doing pretty much still, it was tough. It was a tough mentally for me just be like Okay, I am in the in an okay space to pump in this area. And I was literally pumping on like the most uncomfortable chair. I like didn't know what even like my flange is like weren't fitting properly yet. I don't even think I had like a hand free bra yet. Like, it was just a lot of things at one time. You know what I mean? It's just never, it never felt like it never felt like I was comfortable there. Until later on. I think I established with myself once I knew the nurses a little bit better. And it was kind of like, you know what, I can't live and die on this schedule I've got to do if your boobs are gonna tell you what to do. You know, at some point, they're like, my milk is here and it's like, you got it. You've got a pump now. And so I think mentally I just learned to break that down to say you know what, it's okay to be in this space. If I really need privacy. I'll ask the male nurse to step out or I'll ask the doctor to not be in there or or told the nurses Hey, I'm going to pump them in a close up everything you know, I went to my friend's Olivia actually ended up sending me a cover so that I could like pump in the room and feel more comfortable like that because, again, I got thrust into motherhood and pumping and all these things like very early so I didn't even know you could like buy a cover that would cover you entirely and you could feel comfortable in. And so that's kind of how I was able to like break it down and really get myself to pumping. And then it turned out like, by the end of the journey, I think every nurse in the unit had seen my boobs. So it was like, whatever. But you know, at first, it was definitely like I was a little subconscious. But it was also like, I didn't know what I was doing. And I didn't feel comfortable yet.

Tanya Tringali

Yeah. So tell us what else was going on in the NICU? Because both boys had their ups and downs. Yeah. And it was a it was a struggle, and it was touch and go for both boys.

Yeah. So tell us I know, this is the hard part of the story for probably you to tell and probably for listeners to hear. But tell us a little bit about what some of the challenges were.

Divya

Yeah. Yeah. So um, it's funny when you were doing your introduction, I was like, kind of starting to get teary and I'm like, this might happen again. So Arvin and Ajay. Actually, like, I mean, shockingly enough. I mean, it was actually the one we were more worried about to begin with. He was born first and smaller. And he was the one that I had a ruptured membrane, and it was Arvin. So they were di, di twin. So they had their own sacs, they had their own placenta. And Arvin was actually the one who ruptured so he was smaller his lungs were more his lungs were, you know, more I don't know the right word to say, not like ineffective, I guess could be the right word to say here, but it's like his lungs were more susceptible to being, you know...

Tanya Tringali

They were less they were less pliable is what I'm assuming is one of the things so the lungs really have to do all this work to become expansive. So yeah, they were less pliable. They were less mature. There's a few different,

Divya

Less mature. That's yeah, less mature is the right word, I think there. Thank you. So we were we were worried about Arvin. So when Arvind was born, he was born first. He was immediately put on the vent? Like there was no question like he needed that support immediately. And they were on what's called an oscillator. So an oscillator is it's a very, very, very high frequency, it essentially is breathing for them. Ajay was actually was not on the oscillating air at first. So he was born second. And they were like, he was actually doing okay, on his own to start and then as time went on, throughout that day, he ended up needing to be put on the oscillator as well. So they were both born obviously extremely premature. So they're what's called a micro preemie. And that is any baby born under I believe, 1000 grams. So um, you know, it was, it was touch and go for both of them in the very beginning. And I think for me, like, I, again, was such, like, it's just such a space where it was like, I can't believe this even happened. And then on top of that, having to take in all of the different things that were going to happen with them and all of the different like, risks that the doctors were talking to us about and everything that was going on. And within the first couple of days, I mean, it's crazy to think back and I actually, like created a Google Doc, that I would keep updates in just for myself, really, but then I ultimately would share them with like, my parents or my friends, because people would ask me how they're doing. And like I, it was such a rush, when they would tell us it was like, the laundry list of things that were wrong with each of the boys, or could go wrong with each of the boys was like, I mean miles long. So to begin with, you know, both of them had, obviously, the lungs were extremely underdeveloped. They both had what's called like a PDA, which is essentially like an opening in their heart. So those were the two major things. One thing that we ultimately found out was that they each had IVH, which is inner ventricular hemorrhages in their brain. So there's different levels of those from one being the least severe to four being the most severe. They were somewhere between a one and a three. And they both had the one on each side of your brain. So everything that you can think to be wrong was pretty much wrong. Which is is crazy to think about. So every single day, it would be like, Hey, we're gonna do a blood transfusion. Do we have consent to do this? Hey, we need to do platelets, do we have consent to do this? Like, just, It felt like we were never gonna get past things. And that was really hard. You know, it was like every day you go in and I come from a family of two doctors and I have more doctors in the family. So you know, they're asking me all these medical questions like, I don't know what's going on. I can't even like wrap my brain around it some days. So that's why I started to take the notes to really help myself be like, Oh, these are the things and this is what the potential solutions are for them. This is what the treatment plan is going to be. And for me, and I would say, for any NICU parent, or honestly, any parent that has a child with any sort of health, like, yeah, it's gonna be overwhelming, you might not be a doctor, you might not have any clue what they're talking about, but like, you are your child's advocate. So you're the only person that is there every single day for your kid. And so honestly, like, it's so funny, I'm not a doctor, my parents knew that was never in my path. But I went around every single day, if I couldn't make it in, or like I was running late, I would call them and be like, I'm running late, call me and I would be on the phone. And the reason why is because at our hospital, they actually rotate the doctors every 24 hours. So they do 24 hour shifts. So the doctor the next day is not the same, you are the only constant. And so sometimes, I would be the one being like, Oh, this is actually what happened during rounds. And so I would be the one to be like, you know, oh, we talked about this yesterday, what's the update on that what's going on. And so, and not just me, my husband to my husband is incredible, and has been there through every step of the way as well. But so to me, it was so important, because like, we had to keep up as much as everybody else in that room that was taking care of them, we had to make sure that we were on top of things, because as we did start to see some of their health declining. So this is gonna, this is gonna get tough, but so a couple of days in Ajay was actually they noticed some green bile that was coming out of one of one of the tubes that was helping him to get his food. And so they were added at that time, it wasn't really food, it was more like liquids. So they notice the screen bile, one of the nurses just happened to notice it one night. And they ended up kind of looking into it a little bit more. And they decided that they needed to perform a surgery on him. So they had the pediatric surgeon come in and consult. And he actually needed to have a Penrose drain inserted because he was having he was having some issues in his liver. And so he was like, I think at that point, like a week old, it's just like insane to think like he was a week old, he weighed less than two pounds, like to have a surgery. And so he had to be isolated. He had to have the surgery was performed, like within an hour or two, that basically they inserted a drain into his liver to drain out this additional fluid that was in there. And you know, everything went well, he was you know, doing okay. At the time again, they're both still on this oscillating air. And the goal is to get them off the vent. So that's like, the goal is always to have an off event. But then they have an open PDA, which is the heart condition, they have the brain bleeds, it's like there's so many things happening at one time. And trying to help like, understand what's the priority here. And for Ajay, that was a priority. It was like he had to have this done. Even though it was so scary to think of him being that little and having a surgery, I was like this needs to be done. Because of that surgery he was put on like triple antibiotics, like anything else that was going to potentially happen with him had to be delayed. So the goal was to close the PDA, because if they close the PDA that could potentially help with some of the blood flow and the breathing and etc. But for him, they couldn't do that. And then the brain bleed, you know, the typically the treatment was to do Advil, they couldn't do Advil for the PDA closure because the brain bleeds. It's like everything just interfered with one other you know what I mean? And that's the other thing is like not being a medical professional or not, or having a child that has so many things happening. It's just it seems like it times it would feel like nothing was ever gonna go right. But contrary to that, actually Ajay started doing better. He was doing a lot better Arvin was doing Arvin was doing well to actually, you know, they were starting to show signs of like, okay, Arvin was able to do a Thailand a treatment with tylenol to help close the PDA. So that was wonderful. We were seeing some closure in there. And the brain bleeds were remaining stable, which is great. They weren't increasing as their head sizes increased or they weren't growing or having any sort of issues there. So that was great. But with Ajay it was like this issue with his liver was still there. And as he started to get better, and things started to close, he wasn't having as much as much fluid. They were like, okay, you know, it was their one month birthday, actually. And we had a family conference. And we're like, oh, things are like looking better. Like actually, you know, both boys have been doing well, they've they've been kind of following the track that we expect. We're actually thinking about extubating them in the near future and putting them on high flow oxygen. Instead, Arvin decided that he wanted to extubate himself, he did not want to wait. So he actually, February 16, he actually extubated himself. And they were like, I mean, maybe let's keep this way. And energy had been doing well, his oxygen has actually been showing that he was showing signs of breathing above the event, so maybe he could do it himself. But he, at some point, I think it was like, you know, maybe two, three weeks, and he started showing like this, like skin, the skin issues, and nobody could figure out what it was we had the infectious disease team come in, we have the surgeon come back in and look at it. It was just nobody knew what it was they had taken samples, like, it wasn't showing any signs of like, any signs of like growth or anything. So nobody knew what it was. They thought, oh, maybe it's just like eczema. And ultimately, like that started to get very, very bad. So he started to have like, his stomach was like, bright red, like just an extremely red, it's starting to be a little distended. And that was all on like, February 14, in the sixth, February 14 to the 16th. And so the day that Arvin extubated himself and was kind of having on a high that day, he was doing really great, we got a call that idea was just really not doing well. And he was actually in critical condition. And it just felt like things turned so quickly. Because like I said, there one month birthday, February 14, that was like things are actually looking up like we're kind of on the right path here. But Ajay had had extremely, extremely low blood pressure. And they had done everything that they could do to try and raise up blood pressure. And it just, they weren't seeing any improvement. And they were starting to see that belly be a little dissented. So like, kind of puffed out for your listeners that don't know exactly what it means. And it he still had that redness to his skin, it was so like, it was so so so challenging to look at. I will never forget I, the first time I saw, like, what he looked like I just had an absolute breakdown, I was like something is wrong. So we got a call on February 16. And they said essentially, like, Ajay is in critical condition, we are going to transfer him to CHLA, because they have specialists there that are going to be able to help him more than we can at this point. And so I like I don't even think I understood what that meant at the time. To be honest with you. I don't think I understood how bad it was. And maybe that's because I wanted to mentally just like pretend like it wasn't real. So my husband and I rushed to the hospital, as soon as they let us know he was going to be transferred. And basically, like we talked to the CHLA staff and they were like, they were like, you know, we're going to have to transfer him by ambulance. So if he is in stable enough condition, one of you guys can come with us. If not, we'll have to put on sirens we unfortunately can't have anybody. So we're like, Okay, sounds good. I'll ride in the ambulance with him. We're good to go. So we went to the hospital we got there at the same time actually is the CHLA staff and I just can't even like explain to you like the feeling I had, I felt like I was like, not really there. Like I can still remember to this day, everyone in the room. And we were used to a lot of people we always had like 10 people in the room at the time, like but I just like everything drained out to me it was like something is wrong, like something is wrong and it's not going to be right. And they had to try three different medicines to raise his blood pressure and nothing worked. So because of the condition that he was in. He had to be taken like with the sirens on and everything and I will never forget just like the horror I felt like it was just like now like being with your child and when he's in like, such a, such a tough situation. I just like yeah, it was very, very, very scary. So we got to CHLA, andCHLA brought down to me the magnitude of what was happening? CHLA is an amazing, incredible place, they do the most amazing things, but it's also really scary. If you're a parent and your child is there, you feel helpless is the only word I can think of. It's, it felt like the last resort. And I do I like really appreciate the staff, they tried to make us feel comfortable, they tried to make everything, you know, essentially, at one point, like we had not slept for, like, basically 24 hours, and the staff was kind of like, hey, like, you guys might like, why dont you go home, like take shower, eat something. And like, you know, we're here, this is when we do rounds, this is how the rest of the day is gonna go call any time we're here. But like, try your best to get some rest. And so the night of the 16th, we did, we went home for a couple hours, like we went home at 2am. I'll never forget, we went almost 2am it was the only night we ever didn't go see Arvin, we had been going every morning and every night to see him. Only night we ever didn't go. So we went home for like, literally three hours. And during those three hours, of course, I had to pump I'll never forget, I'm just like pumping and sobbing. And I went back to the hospital at 5am. And I was there and just through every moment and like, when I went back, and sorry, this is graphic. But when I went back, I will never forget just seeing he had to have a catheter put in and just it was just blood in. I am the child of a pediatric nephrologist. So I saw that and I was like, this is the end. Um, so we spent sorry, we spent the entire day at the hospital. And the doctors were really wonderful and kinda and trying their best to help us understand what was going on. But essentially, at one point, my husband had to come a little bit later, because he was still working at the time, which is crazy. And he came a little bit later and and the doctor, who were you're working with was like the neonatologist was like, maybe we can have a family conference early. And I was like, okay, sure, because we had planned to do it the next day. And he was like, I think we should do it. Let's try to do it today. And now I look back and he was not so subtly trying to tell us that the condition that he was in just was so poor. And so we ended up having a conversation with him. And my dad was on the phone, and he was telling my dad all of like, his vital signs and everything in my eye. My dad was just like silent, like he was just so quiet. And so he told us essentially, like, you know, we're going to monitor a little bit longer if we can, you know, keep him if we can keep certain things like above, like if we can keep his blood pressure up, you know, we're managing his pain, everything. You know, we'll see what our options are. We're going to talk to our, our surgeons, and I was like, Okay, I don't know what that means. Why does he have to have surgery. But ultimately, what happened was that the option was to have him go into surgery, it it became obvious that he was having liver failure. And so essentially, they were like we can go in and we can remove parts of his liver that are dead or his intent. We don't know what we're going to find basically when we open them up. So I had mentioned before that he was having those issues. And so basically, what we had to do was we had to make a decision. Were we going to have him go into surgery? Or where were we going to just allow him to continue, you know, to suffer in pain, basically, or were we going to let him pass peacefully and so we to be honest, they kind of made us feel I kind of at first was like oh, like we can do the surgery, like we're going to do the surgery. This is going to be like the right option for us. Like we're going to remove this it's going to be fine. So we got ready, we set up like we signed the consent form. They started making his room a sterile environment because he wasn't even stable enough to go into an OR. And then we talked to our families and we told them what was going on. And I just had an I had this moment and we were like we have a twin son. Like we have another son who is relying on us. And essentially what we've realized in this moment, and this is really hard, and I know not everybody's going to agree with this decision. So just please know that this is the choice that my husband and I had to make for our family. But we had to think about our son and think about ourselves, honestly, and the life that Ajay was going to live with this surgery was so poor, he would, he would basically not have a life. And we also didn't know if he was going to survive through the surgery. So the thought of putting a baby that small through that pain is like really unbearable, and especially as a mom, who carried him and loved him, and still does love him. I couldn't do it. And so my husband and I turned to each other. And we were like, we can't do this, like, he can't, he can't go into surgery, like we can't make him live this life. We can't make Arvin, like, live this life. And so ultimately, we had to make the decision to allow Ajay to pass peacefully. And so we got to hold him for the first time ever, which is insane to think we didn't ever hold him. So the first time I ever helped my son was when he was passing away. So my husband actually was the one to ultimately, we were, we were able to have our, our family come in, which is like, which was a challenge, because COVID was, is still rampant. And so my father, my husband's family was able to come in and be with us during that time, because nobody had ever met the boys at that point. They only new hospital staff. And so they were able to come say hello and say goodbye. And my husband ultimately helped him as he passed away. And we were able to get like, some footprints and take some photos, which is crazy to me. And ultimately, he was he was able to pass peacefully. And it was the toughest decision I will ever have to make in my entire life. But I also know it was the right decision. Because I think about the life that Arvin has been able to have. And it's really because his brother, like, allowed him to without like, without, you know, having to make that decision, Arvin wouldn't have been able to get like the care that he needs and the attention that he needs to develop into the truly incredible child that he is. And so, you know, I know others have tough decisions that they've had to make, and, and I still question it to this day. But ultimately, I have to remind myself that I made a choice that I felt like was best for my family. And while it will never be easy, it's it's ultimately, what we decided to do. And, you know, what we felt like was right.

Tanya Tringali

I hope I know, I'm probably not right, because we live in a strange time and a strange world where people have lots of opinions that they don't keep to themselves even when they should, but I hope that everyone listening can at least empathize with the choice you had to make, regardless of what choice they would make for themselves. I want to believe that. But I also have a cynical streak, and I'm not sure what people will say, but it doesn't matter. I mean, I I understood everything you had to do. I understood I understood at the time, every choice you had to make. And you were always incredibly thoughtful and logical. And nothing you had to do during that time was easy. So I hope people can refrain from judging you in any way shape or form. Tell us a little bit about the days that followed the days and weeks and months because boy, was that a journey you had to balance finding joy in your baby that was starting to make its make his way home while you had to feel the loss of another child.

Divya

Yeah, so it's, it's honestly like it was almost like losing Ajay fueled Arvin to like, do better. I think he just like knew he was like, I have such a huge purpose in life and he started to fulfill that from the beginning. He literally like it was it was focusing on him. And I think that's I put 1,000,000,000% of my energy into our vision. So like then we said goodbye to Ajay around 10pm. We immediately drove to he was at Cedar Sinai Tarzana was is where Arvin was. So we immediately drove to Tarzana. And just spent time with Arvin. And I will say, we had the most incredible nurse Carol who I love her, I to this day, like, we think of her as family, she's just one of the best humans. She just like, helped us. Like she literally just like, held us in her arms. And it was tough because for me, I didn't, I didn't have my family there. Yeah, they weren't, you know, with us and. And so it was really hard. But seeing Arvin just made me really happy. And what I will say with that, is that for any other parents have twinless twins, you might not feel that way. You might feel really sad when you see your child, and that's okay. I had to remind myself, like, whatever way I feel is okay, like, there's not one answer. And so different days Arvin always made me happy. And I'm so so so lucky. That was the case, because that is not the case for everybody. And I 100% understand where they're coming from because the moments that I wasn't with Arvin, it was not good, I was so sad. I was so unhappy. And mix in losing a child with Oh, yeah, I also am postpartum. And I have all of the feelings. And so for me, that was when that sadness hit was when I thought about a one not with Arvin anymore, or honestly, like, even sometimes when I'm with Arvin, some of the milestones. It's like, oh, he's two months now. It's like, oh, well, they both would have been two months now. You know, every milestone you have, is like, it brings on excitement, and sadness. And so balancing that was always tough. And it still is tough, like Arvin is turning their birthday is January 14, so they will be one year old that day, and I don't know what I'm going to feel, you know. And that's hard. And so it's like, I just sometimes I still don't know how to manage those emotions. But for me, I felt very lucky that when I was with Arvin, I, the excitement was like, just exploding. And that just brought me through so much. And so I had mentioned to you guys, you know, February 16. Ajay is passing away first time I ever helped him literally the next day, because Arvin had extubated himself. I was able to hold him. And so it was such an amazing moment for me to go from the loss of my son to being able to actually hold my other son for the first time. And yeah, it was, I mean, I cried a lot. And I think those were happy, sad, happy and sad tears. Because, you know, I was like, I feel like I'm holding both of you, you know?

Tanya Tringali

Yeah, you just gave me this image. It just gave me chills, you know, to imagine Ajay passing almost at the same time as Arvin extubates himself and really fills his lungs on his own in a big way. Like, there really was this transition happening. Yeah, between them. And it's very powerful.

Divya

Yeah, yeah. It's funny the, the nurses always used to like joke like, these two boys are so in sync with each other, like, one of them will alarm than the other alarms. One of them will alarm the other alarms, like they would pull out like their, like one of their tubes, and then the other one would pull out the same exact tube. And so they always had this like connection. And it's really special. This is unrelated to like how I've dealt with things, but I just, I think about like, I think about like, how to talk to Arvin about this and do I and, and that was a big thing right afterwards, actually. He's like, what do we do? And I would tell him everything. Like I would talk to him about literally everything in my life, and that included his brother that we had lost. I want him to know and I asked my friend and my family and stuff to talk about Ajay like I don't want it to be this like, unknown thing that he finds out later in life like I want him to understand because I have heard, I don't know, because I'm not a twin. But I've heard that they just have this connection that even when they're not there, they're there. And so I want him to know what that little feeling is before. You know. It's too late. And so yeah, I don't know. It's just crazy.

Tanya Tringali

You want him each other always know him?

Divya

Yeah, exactly. And the other day, it's so funny. So we have this box that we put a lot of the memorabilia for Ajay into. And so we have this box. And it's engraved with his name. And I put it on our bookshelf outside in our living room recently. And it was feeding Arvin. And he is like, just wild in general. He just like loves to talk and whatever. But he kept looking at the bookshelf and staring at it and talking to it. And he has never cared about that bookshelf. He doesn't like he's way more interested in other better things in the house, you know, the TV, whatever. But he could not stop. And I was like, Oh my God. And we had just brought it back from my in laws house very recently. And I was like, oh my god, this is so weird. And I was like, Am I making this up? And then I was like, No, I'm not. He literally was like so drawn to it. And it was really special for me. Because I do I always think about I think my husband and I dealt with loss differently. My husband was so dug into, like we have Arvin, this is the best thing ever that we have one of our boys, you know, we're so happy. And I am too don't get me wrong. But as the as a mom, I think I flipped a little bit. And I was always like, I mourned the potential of Ajay. And I still to this day do. And I think that can be really tough. And I try to balance that with again, like the excitement of Arvin. But it's always the potential of a day that I feel sad about, you know. So yeah, I mean, still, we're almost a year out, and I'm still trying to figure it out. So I can't say that it's all normal. But you know, it's, it's a journey, like loss is such a journey, and it will never not be and I think, you know, I so feel for the parents that have lost a child that's a little bit older that you have even more of a connection with I like, Oh, I just My heart goes to you, but but also the moms who lost a baby that they never got to hold or have. It's like, you mourn that potential still.

Tanya Tringali

Hey, everyone, it's me, Tanya, your host here at the mother wit podcast. You know, I sometimes invite my clients on the show to talk about their birth stories and postpartum experiences. But I want to tell you a little bit more about what those clients and I actually do together. I started mother wit to help people in the perinatal period achieve their health and wellness goals. That means whether you're hoping to conceive and struggling with high blood pressure, or high blood sugar, or you're having trouble managing anxiety, or depression and the postpartum period, or maybe you just need support and advocacy between prenatal or postpartum visits, I can help get a discount on your first consultation with me at motherwitmaternity.com. Using the code first console 10% off. That's one 0% symbol, all one word. I'm looking forward to working with you, and maybe having you on the show to.

Absolutely, absolutely no one should ever get to say for anyone else, what time of loss. It's finally painful, because we all know that miscarriage is painful, right? So yeah, it's just it's a spectrum. And there's pain every part of the way. You know, I have one question that's been really sitting with me while you've been telling this story, because of course, I'm reflecting back on what I watched happen in real time. I'm wondering if you feel at all. And I don't know if you've just said these words, or if I'm taking this completely out of context or what so just, I'm reframing and then you tell me what, where the truth is in this. Do you feel in any way that you delayed some of your mourning, because you were trying so hard to push it aside and feel the positive feelings that you could feel for Arvin and then that's why we kind of had that time which I'll let you talk about a bit where we kind of fell off the cliff a little bit and we had to kind of regroup I mean, we I think I felt like I was perhaps always waiting for the other shoe to drop because you do present as I'm sure people will, in listening to this episode. Hear how much joy just as in your voice and it took us a little while to get to the harder part of the story because you just you all you come into every conversation with so much love and light and I feel that from you, even when It's dark times. So I just I wonder if you can expand upon that a little bit and the journey that came a little later.

Divya

Yeah. So I can definitely say that the other shoe did drop at some point. But I am I'm a naturally like, I'm very positive person. I like an energetic. I'm outgoing, like all those things. And so I think for me, I pushed that all as much as I could. And it wasthe mixture of Arvin being about to come home, in our oven coming home. That was hard. And I just, yeah, I definitely I hit a wall, where it was like, I don't know how to hold in this grief anymore. And it would come in such strong, strong waves that I didn't know what to do. And it, it's, to be honest, it was such a mix of like postpartum and grief that I didn't even know what was up from that. Like, it was like, which 1am I dealing with? Like, what's really going on here? And sometimes my husband would say to me, and I so appreciate this, he would be like, what, what is going on? Like, what is the thing that you feel like is really making you feel this way right now? Is it Ajay? Is it that you're, you know, body is going through these things? Like you don't I mean, we try to like pinpoint it together, and then talk about it. Because if it was Ajay, I mean, he can understand and he feels the sadness. If it's not, I can still talk to him about it. Or he can be like, Hey, why don't you talk to XYZ person? Why don't you talk to Tanya, like, you know, I'm just trying to work through some of that. And I think, for me, like, I have a hard time as open and like, as outgoing as I am, I have a hard time talking to people about things and especially like, in that moment, it felt like nobody understood. And so for me, I went to the NICU staff, they became like my therapist, sorry, guys. You know, and I would talk to them about things. But I think I found comfort in it. Because they knew Ajay. Like they were the only other people that had ever met him and spent time with him. And so it was really special to me to like, be able to talk to them about things. And they were so amazing and so supportive. And I will never forget, like, after I, the day after I went to the hospital, and I was there, you know, my normal 7am. And everyone was like, What the hell like, what are you doing here? And I was like, I have to see Arvin. And the doctor on call that day just came into my room. And she just hugged me, and she just cried. And I was like, you understand, like, you understand how sad this is and how sad I am. And you understand because you got to see how feisty my little one pound child was, you know. And so that was, that was a way that I found comfort. But to be honest, I don't know when I finally realized like, I need help outside of just the NICU staff that I'm talking to, or my husband or even like my parents or my friends or whatever. I think I just hit a point where and I think I texted you. And I was like, hey, something's wrong.

Tanya Tringali

I kind of remember how this unfolded. Well, I the only detail I'm unclear on and I think you'll clarify for me, somebody, probably from the NICU or the social worker at the hospital, something like that, on that side of the equation, gave you a bunch of resources. And I instantly knew that that was going to be totally overwhelming because it was too much. It was like great resources, but too much. And I remember saying, Let me send them to me. Let me go through them. And I will help you decide which ones are worthy. Based on everything. I think I know about you. And so I put like little bullets together of that. And then I found other things. And because our work together was so different than the work I was doing with many other families. I just needed to follow you. And so it became clear that you were struggling with a couple of things, right? We knew you needed tools, resources and support and we had to kind of figure out what in each specific category you need it. So for example, this is something I can't remember whether it actually happened or you were just worried about it happening. When we would look at resources and part of the reason I did it for you initially was you there were certain things you didn't want to hear from people like certain types of niceties or trying to make you feel better. And again, remind me if that I actually happened to her it was just...

Divya

No, it did happen.

Tanya Tringali

Okay, so there were certain people in your life who said some things that were meant to be helpful, but they weren't. This is a classic problem when it comes to the topic of miscarriage the spectrum all the way to infant loss for people. And so we were trying to figure out how to get you potentially peer support of people who understood because you knew you couldn't rely on the NICU staff to be your therapist. So we got you hooked up with Jen Hampton, one of the therapists that I love working with who specializes in the perinatal period. And we got you set up with some potential options in terms of whether it was going to be group therapy, peer support, podcasts, books, you name it. So now from there, tell me what you recall and what was working and what wasn't working and how you ended up carving a path out that worked for you.

Divya

Thank you. Yeah, you're right. So I think in the immediate when I knew things are like, I need somebody to talk to you and I need them to be reliable. You introduced me to Jen. And that was fantastic. Jen was incredible. I had honestly, I think we only even had one conversation, but it was so helpful. And it was so much more insightful than the other conversations I have. And one thing that Jen told me that I would highly recommend, whether or not you have a loss, or whether or not you just have postpartum depression, whatever it is, Jen was like, find a space, find a time where you like, you can cry your freakin eyes out, do whatever you want. But she's like, but listen, if you find yourself like laughing out of nowhere, that's grief to like, if you're like, why am I laughing so hard at this. And so my two examples of that is, my shower became my sanctuary. I would like literally just bawl my eyes out in the shower, great place to cry. And then I'd come out and I'd be like, I'm renewed. This is great. And my other example was like, with the laughing was my husband. I remember, Oh, he like asked me for like a buck like some mints in the car on the way to the NICU one night, and I kept grabbing our garage door opener, and I just like could not stop laughing. I was dying. I thought it was hilarious. And, and when that Jen said that to me, and then it clicked and I'm like, Oh, this is me dealing with my grief. And it's just so silly. But it's like, so nice to have a moment where you do laugh, or you're like, This is funny. And that's also where like, I would have those moments with Arvin, like, he would do something silly. And I'd just like giggle. Like, I'd be like, This is hilarious. Or like, I would go cry in the shower. And I would be like, This is my happy place, you know? So I think that was awesome. The other like, I think the other resource that I found to be incredibly helpful was an organization called Hand to Hold. And their NICU support organization, they have an app, they have a website, they have peer mentors. I just applied to be one actually. So amazing. The peer mentorship program, you tell them you tell the the coordinator exactly what you're going through exactly what's happening. And they matched me to a woman who we were talking and she was like, yep, same situation. Yep, seems like everything aligned. But she had gone through this entire ordeal seven years ago, and she talking to her. I felt like I was looking in a mirror but at a wiser human being than me. And it was so wonderful. And she would check in on me. And when Arvin came home, she was like, What's your setup look like? This is what we had to do this is and it was just so nice to have a person who truly understood start to finish what my situation was like. And the other thing that I found very helpful was I actually was connected to through our NICU. I was connected to a couple of moms who had longer term NICU babies. So our van was in the NICU for 118 days, almost four months. And so our NICU discharge coordinator connected me with other moms who had longer term babies that had been in the NICU so that I could talk to them and understood and honestly like, talking to them, post NICU was incredibly helpful. They helped me to understand what life could look like one of them happened to have lost a twin also. So she and I were able to connect on that we've talked about like future things what you know, her relationship with her spouse, her relationship with her child, like how she talks to him about, you know, the like their lost son, those things were so incredibly helpful for for me those two specifically, I think,

Tanya Tringali

Are you still in touch with her?

Divya

Yes, I'm still very close to them. Yeah. Great. Um, what I did not find as helpful was like, I hate to say it, but like, there was a couple Facebook groups that I joined thinking like, oh, mothers of twinless twins. There's there is a premium group that I think is wonderful called premiums on oxygen. And that's more of like I would say, helpful because of like the questions that you can ask other moms and dads who have have a child, or caretakers I should say, who have had a child come home on oxygen. And they're just like, super great. And like, can answer questions can talk through tough situations with you, whatever it is. But some of those, like less helpful Facebook groups, and, and one of the reasons was I was in a group for twinless twin parents, and a lot of the parents were really, really sad. And that's okay. Like, there is nothing wrong with like I said, some parents see that differently. But for me, seeing that sadness, so prominently made me think, is it wrong, that I'm not sad all the time? Like, is it and it made me question my emotions and my feelings. And that was tough. And I did not like that feeling. And so I had to just kind of like, mute that group. And I think I ultimately ended up leaving it again, those parents deal with their loss in the way that they want to, I think that's wonderful. Find whatever is best for you. It was not best for me. Some people also, I have two amazing friends in Los Angeles. One is Kristen, who you know, and who your listeners have heard before, who is I joke with her that she's my motherhood Guru, I text Kristen and ask her all of the questions by their friends, Vanessa, she also has twins, some people would find it really hard to talk to them or to be around them because they have twins. I don't I love it. I like see those interactions. And I know those parents, and I think I tell them all the time, I'm like, You are super humans. And I love the relationship that I have with them. Because it has helped me they've seen me, they still will say like, Oh, your still twin mom, you know, and things have known me from before when I was carrying both of the boys to now when we we just have Arvin with us here. And so those have been the resources that I have found to be like, the most helpful. And then just honestly, I mentioned it before, but like the support that I have from my friends and my family, I could not even tell you like I wouldn't be here. And I'd say that very seriously without them. I just they are the people that have kept me going day in and day out. And my husband, of course, he's incredible. And I love him. And we have been through the worst and the best together. Not like that network of family and support that we have like, they kicked in on day one. When they heard that I was in the hospital. I got like 7 million care packages. The hospital staff was like, what is happening? What are you? Do you actually live here now? Because they sent me like, like books, coloring books, like things to like play with, like just random stuff, because that's what they did. They sent my dog food so that he got fed, you know, they sent us a meal train so that we had food that was not just hospital food. It was just like incredible. And it's my friends from high school. It's my college friends. It's my grad school friends. It's my work friends. I just like I don't even understand what I would do without them. They've been the most amazing people that remind me every day of how strong I am. Because I don't think I I do it myself. They're the people that have kept me going and really kept me like so excited for everything that we have to experience in life moving forward.

Tanya Tringali

Wow. That's incredible to via you. I mean the the arc of you telling this story, which as I understand it, this is the first time you've sat down and kind of told it start to finish in this way. It's so interesting to me and it really speaks to who you are as a human being and it's very in line with what I've seen from you and all the time. I've known you now almost a year. In that, you know, you started on this like happy note you were like giggling and I was like I don't even know how we're gonna get into this story. I don't know how to do it. It felt like a game of double dutch didn't know how to how to dive in,

Divya

keep you on your toes.

Tanya Tringali

You know, eventually we dove in and I mean, yeah, you sure do. And you know I'm sure our listeners can possibly hear in my voice. I mean, I'm I'm sitting here listening to you, getting weepy trying to keep it together. And here we are now on the other side of your story and you're back to, you know, being bright and bubbly and laughing and I admire you so much for your ability to not only the way you have navigated the entire experience not that it's over. But you know what I mean to this point, you know, the way you manage the ups and downs and like when you said the thing about the Facebook groups where everyone was sad and it made you questioned yourself. I totally get that.

Divya

Yeah, I mean, don't get me wrong. And I would always tell people, I, people would ask me, How are you doing? I'm like, don't get me wrong, I'm sad. I'm sad. But at the same time, I find so much joy in my son and the people around me. And I just kind of let that fuel me because I can't live in that sad space. It's just not for me, you know, and I'm sorry for people that do and don't want to be, you know, because it's unfortunate. And it's tough to get out of it, you know?

Tanya Tringali

Yeah, yeah. But you were always ready to tackle it. When it felt too heavy. When there was too much heaviness on one side of the equation, you were like, What can we do now? What What can we throw at this that we haven't yet? And there were times where the answer whether it was for me, or any of the number of supports that we've just discussed, probably looked at you and said, sometimes we just have to sit in that heaviness and feel both opposing feelings, right? Because yeah, that's motherhood and parenthood, across the board, no matter what happens in one's experience, there is and I've said this a million times on the podcast, there's a way in which one of the biggest things we're learning as we grow into this new phase of adulthood that involves parenting is holding a positive emotion and a negative emotion at the same time? And I just think people who have an experience like yours, learn that on a level most of us don't know anything about, but it's the same skill.

Divya

Yeah, yeah, it's definitely I mean, I've learned to be more flexible and adaptable. And you can ask my mom, again, I mentioned I'm very type a person. But like, in the past, I probably would have been like, you have to do this this way. Or this has to be this way. And I've learned how to like, just kind of not go with the flow, I still can't go with the flow. But at least I'm more like, able to flex to the situation and to not to let things go a little bit and like, be a little bit more easygoing than I used to be because I have to. And I've had to, like deal with things that I couldn't control. And so I have to let go of that. And it's, it's been actually really nice for me to mentally be able to do that. So yeah.

Tanya Tringali

I think that's what many people these days are calling giving yourself. Grace. Yeah, that looks different for everyone. But somebody who identifies as, as type A, as you who is as addicted to structure as you are, that is like the ultimate giving yourself grace. So that might not be somebody else's grace, but it's yours.

Divya

Exactly. That's so true. Yeah, I think it's been it's been a journey, and it's going to continue to be but for me, I just, I'm lucky that I have people around me who love and support me, you being one of those people, you have connected me to so many resources and some of the things that I'm talking about, I wouldn't even know what they were without you. But I think that was the other piece. And this is honestly some of the advice. I told you my unsolicited advice. One of the things that I tell people is like, get a postpartum specialist like, don't, don't try to do everything by yourself, because you're going to feel things and you're going to think things and you're going to, you know, and you just need somebody who's an expert. Yeah, you can talk to your friends. Yeah, you can talk to your family. But you need somebody who is like, unbiased to focus on you. And so I think that's where that also helped me a lot is knowing that I had you to support me and all the resources that you could connect me with, which was, like invaluable to me.

Tanya Tringali

Thank you so much for saying that. I mean, in all truth and honesty, there are ways in which I was flying by the seat of my pants with you. But that's the nature of the work that I have set out to do. I think I'm in uncharted territory, even in normal situations, this degree of virtual care, that is so human intensive, despite it being virtual, no, I don't know anybody else doing it. If you're doing it, and you're listening, I want to hear from you. Because we need to talk and, you know, figure out what pieces of what worked best. But I don't know anybody else who's doing this. And all I know is that I have such a real connection with everyone that I work with. Even when I my inner voice says, Oh, shit, you're you're out of your league. Now.

Divya

It's taking the burden off of somebody, though, to say to be like, Hey, I know you have to be in the NICU for six hours and you can't be sitting on your phone looking at resources. Let me look into what I think is a viable thing for you and going to help and or even not even you didn't have to give me your opinion. You just told me here's like an overview of what this is and how it could help you what might be challenging about it.

Tanya Tringali

What you have shared with people today is absolutely invaluable and that's the range from just your real your life experience and the emotion that comes with it, along with the breakdown of the resources and what worked, what didn't work for you. I just cannot thank you enough for your time and for sharing so openly.

Divya

Yeah, of course. And just the last thing. So I, the one group, I didn't think but I hope they already know. And this is like this can be challenging for NICU parents is like recognizing the people that are in the NICU. I think, for us, they became our family. And so as I was talking about that support system, they really became the people that we went to I mentioned, they were like my therapist, but like, not just that they. They were our family, and I just can't imagine our journey. Without them. I know how much they love and support us. They check in on Arvin all the time they check in on us all the time to this day. It's just amazing to have that level of care and support and we wouldn't be where we are today without them. So I have to say thank you to them, too. I know it can be tough as a parent, again, finding your place in the NICU, but just know that like you are a member of the team and that's your role is to be part of that NICU team when your child is there.

Tanya Tringali

Didn't you start a fund in Your Son's name for that NICU?

Divya

Yeah, we did.

Tanya Tringali

Tell us a little bit about that.

Divya

Yeah. So like I mentioned, I have wonderful friends and family who were like, sending us all the things in the world, like we got like 17 flower bouquets, and like candy and cookies and everything. And I'm like, Okay, we got to, we got to get this funding some to something else. And so we decided to actually start a, as part of the cedars, Sinai Tarzana, they have a foundation, and we actually asked our friends and family to donate towards that foundation, specifically to the NICU. In honor of Ajay they were the people that helped us safely bring home Arvin and they were the people that took care with all of their hearts to take care of Ajay. So we wanted to be able to recognize him and recognize their hard work. So I think last, I heard we had raised like over $6,000 for the NICU, which is awesome. And it's really all to our friends and our family. But for us, it's just like a way to give back to them and for them to be able to get the things that they need to help support the NICU and NICU families. Because it's a tough journey. It's not easy being a family that's staying there. And and I think just being able to help them in any way possible is really important to us.

Tanya Tringali

Awesome. Well, I'm going to share that in our show notes. If there's any other specific links or resources that you want our listeners to have you send them my way, and I will make sure everybody gets them.

Divya

Yes, happy to um, thank you for having me. I really appreciate it. I'm glad that I was able to talk to people. I mean, you're an incredible resource. But just know I mean, like everyone says this, it sounds like you're not alone. You really aren't. There are other people, they might not have the exact same situation as you though. And it's okay to know that your situation is unique, but know that there is support for that situation as well.

Tanya Tringali

Absolutely. And you said at the beginning that you were open to talking to people, so I will make sure that we provide whatever the appropriate contact information that you want us to share.

Divya

Yeah, definitely.

Tanya Tringali

Give everybody a big kiss for me. I will.

Thank you for listening to the mother whip podcast. If any of the issues we discussed today resonate with you or your experience, I'd love to hear from you. Leave me a voicemail at 917-310-0573. Or better yet, email me a voice memo at Tanya at Motherwitmaternity.com. I really want to hear what worked for you what didn't work, what support you'd wish you had, how you got through the tough times how you advocated for yourself, or especially any tips you want to share with our listeners. I want to hear all of it. And if you'd really like to work together, you can get a discount on your first consultation with me at Motherwitmaternity.com using the code first console 10% off. That's one 0% symbol, all one word. Okay, that's all. That's wonderful being in community with you all. Thanks again for listening and see you next time.

Unknown Speaker

And remember, listeners, nothing we discussed on this show should ever be considered medical advice. Please speak to your local provider about anything that comes up in this show that resonates with you and your needs and your health care.

Transcribed by https://otter.ai