#314 - 👶 From Diagnosis to Discharge: A Mother’s Journey Through Gastroschisis

Hello friends 👋

In this episode of Beyond the Beeps, Leah discusses the journey of NICU families, focusing on gastroschisis, a condition where a baby's intestines are outside the body at birth. Ruby Bacardi shares her personal experience with her son Oliver, who was born with gastroschisis and spent three months in the NICU. The conversation explores the emotional challenges, medical insights, and the importance of support for families navigating this journey. Dr. Daphna Yasova Barbeau provides medical perspectives, while Ruby emphasizes the significance of cherishing small victories and finding hope amidst uncertainty.

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

Leah (00:02.774)

Welcome everyone to Beyond the Beeps. We have spoken before in other episodes about babies who come to the NICU who are not preemies. And one type of baby that comes to the NICU or that we see really quite regularly is babies who have something called gastroschisis. So breaking that down for those who don't.

speak medical terminology, gastro meaning of the gut or the intestines and schisis being a splitting or in this case, like a hole, the intestines coming through a hole in the abdomen. And I remember the first time I actually heard about gastroschisis, I was in high school. I was pretty young and it was phrased to me as being born with your insides on the outside, which felt pretty graphic.

And I realized they were trying to make it pretty simple for me in non-medical language because I was young. But it seemed like a very interesting way to be born. And when they were sharing the story with me, it was about a boy who was in my high school and he was this awesome kid. He was really smart, really funny. He a football player, actually.

And I know that this story was told to me in a, never know where people come from. We never know where you're going and look where he is now. And that perspective, was a victory story, right? Or overcoming obstacles. However, when we're living their stories from the beginning, it's really quite different, right? It's not the end of the story that we live when we have a baby. We're living every single moment.

and every single day. From dreaming about the future, imagining each possibility, from good and bad, especially when we're faced with a medical or genetic diagnosis, it can be scary. And we certainly try to predict outcomes. And sometimes we have to alter our ideas of the future and maybe sometimes be afraid to dream. And then of course, what we have to deal with and cope with and try to survive is the reality of what we're facing.

Leah (02:15.276)

Joining me today to share her story is Ruby Bacardi, the mother of Oliver who had gastroschisis. And also joining us throughout in providing medical insight and perspectives will be Dr. Daphna Isova-Barbeau, a neonatologist and also incubator host. Ruby is an incredible fashion designer and clothing atelier. If you ever get a chance to see her work, it's just fabulous. She is absolutely inspiring.

And she and her husband, Francisco, are the parents to Oliver, who was born at 36 weeks and spent three months in the NICU. And also Enzo, Oliver's little brother, who was born full-term and did not go to NICU. Hold on. Kumari, seriously, of all days. One second, let let her out of here. Kumari, what is your problem?

Leah (03:20.214)

Yeah, okay? Come on. Come on, come sit down.

go back. I'm gonna go back just a smidge.

Leah (03:48.076)

She and her husband Francisco are the parents to Oliver, who was born at 36 weeks and spent three long months in the NICU, and Enzo, Oliver's little brother, who was full term and did not go to the NICU. She has been involved in the NICU community with ICU Baby since 2017, chairing fundraising galas, events, and working from behind the scenes to improve the experiences of thousands of NICU families. And I am thrilled.

to say that she's joining our team on the front lines as a NICU parent mentor supporting other parents who are experiencing the NICU. Welcome, Ruby.

Ruby (04:26.69)

Thank you, I'm excited to be here.

Leah (04:29.002)

Yeah, and this, you've been in the NICU world for a long while now, and you've been working quietly and very humbly behind the scenes to improve the lives of NICU families. Why did you decide to finally share your story with the world?

Ruby (04:45.124)

it's, it's something that I've shared with family and friends, but not with everyone yet. But mainly because I feel that a lot of people have a misconception of the babies that are in the NICU. Everyone thinks that it's a preemie, and they were born early and they were born tiny, but that's not always the case. You can be born perfectly healthy pregnancy and then something happens and you're sent to the NICU or like us, we knew that we would be in the NICU for a while. and so I just.

wanted to share the story and let other parents know that they're not alone. is an emotional, takes an emotional toll on you. I just want to, if this conversation can encourage more support, if one parent feels more prepared, more seen, more supported because of this conversation, then it's worth it.

Leah (05:31.868)

That's amazing. Yeah, I would agree with you. And we are, you're lending your story. I know I've, as somebody who's been lucky enough to know you and work with you, I have shared, of course, anonymously your story, like with other families who are facing gastroschisis. So I know it'll be even more impactful when they can really hear it directly from you. So I'm super duper grateful.

Ruby (05:53.155)

Yeah.

Leah (05:56.628)

And before we go into all of our story too far, I want to bring in Dr. Barbeau to be sure that we're using the right language, not the one that was given to me when I was little, which was not helping anybody understand it. Dr. Barbeau, can you help us understand what is gastroschisis and what is your experience in treating it?

Dr. Barbeau

Hi, Dr. Barbeau here. Gastroschisis is a birth defect where a baby is born with their intestines outside of the belly through a small opening next to the belly button. It happens very early in pregnancy when the abdominal wall doesn't form the way it's supposed to. And this way the intestines are exposed to the amniotic fluid so that they can become irritated and swollen throughout the pregnancy. After birth, babies with gastroschisis will need surgery to place the intestines back inside and close the opening.

Some of the complications we see in babies with gastroschisis include difficulty advancing feeds. So the intestines have been impacted by growing in that amniotic fluid and they don't work the way they're supposed to. There's a risk of infection and there's a risk of growth issues since many babies with gastroschisis need IV nutrition for days to weeks while their intestines recover. Now, gastroschisis occurs at a rate of about two infants for every 10,000 live birth.

Leah

Thank you Dr. Barbo. So how was gastroschisis first presented to you or why?

Ruby (06:31.63)

So we were at our 13 week ultrasound. The doctor noticed something unusual in the ultrasound. He mentioned that the intestines form outside of the body, which is something I didn't know. And around 13, 14 weeks, they retract and the skin grows over and it closes. So if at our next appointment, he could still see the intestines on the ultrasound, they were still visible outside of the body.

it would confirm the diagnosis. So hearing that was a little scary. I had never heard of gastroschisis before. I didn't even know that that was a possibility. So it was a shocking moment and there were a lot of unknowns because I'd never heard of it, a lot of fears because I didn't know what was in store. And I didn't know what the future would look like for Oliver. But from that point on, we were just thrown into this

Leah (07:11.234)

Mm.

Ruby (07:28.514)

whole new world of specialists, of high-risk appointments. I had to go twice a week towards the end of the pregnancy for ultrasounds just to make sure everything was okay in there and just preparing ourselves mentally for what was coming.

Leah (07:46.028)

That is an over. mean, having a baby is an overwhelming and just life altering experience, obviously. So adding that on, I can imagine it being really frightening. Was anything ever said or told to you even in that pregnancy? Were they able to predict anything at that point, like to say, well, when he's born, this is what we're facing.

Ruby (07:50.307)

Mm-hmm.

Ruby (08:08.078)

No, and that was scariest part. I mean, everything was scary, but not even knowing that. they can't see on an ultrasound what is outside. They just know that it is. So once the baby is born, then we know. And they can give more of an estimate of the NICU stay, but still, every baby is different of what comes. So they could.

Leah (08:11.094)

Wow.

Ruby (08:35.17)

They told me two months, could be four months, it could be six weeks. So it was a lot.

Leah (08:43.158)

That is, I've found recently, we talk a lot about uncertainty in the NICU. And for a lot of parents, they say that uncertainty was or is, as they're living through it, one of the most crippling things, that element. What were those first days? Tell me about the delivery, the rest of the pregnancy and his first moments in the NICU.

Ruby (09:08.856)

So other than the diagnosis, I had an amazing pregnancy. I had no symptoms. was great. And it was exciting to be able to see him on an ultrasound multiple times a week, which most moms told me that they don't see an ultrasound until towards the end, really. So the day he was born, I had gone to the hospital and

Leah (09:21.046)

That's true.

Leah (09:27.744)

Yeah.

Ruby (09:34.68)

We didn't think he was gonna be born that day, because I had gone to the hospital a few weeks before and I had to stay overnight for observation. So I figured this was just gonna be the same thing. But then the doctor came in and said that he was gonna be born tonight. And even though he was 36 weeks, everything was fully formed, he would be fine, because that was my first concern. And I think he knew with the look on my face and just answered my question immediately. So once he was born, it was a C-section, once he was born, I heard him.

Leah (10:03.148)

Mm.

Ruby (10:03.16)

cry. I didn't see him and he was taken immediately. I was sent to recovery and my husband followed him to the NICU. A few hours later around, so he was born at 1055. So around three o'clock in the morning, I was rolled into his room and I got to see him in the incubator and he was just so cute, so tiny.

Leah (10:23.202)

Hmm, how much did he weigh?

Ruby (10:25.902)

four pounds, nine ounces. So I was told that that was big for a baby in the NICU, but for me it was tiny.

Leah (10:30.722)

Yeah, yeah, he was kind of a mayor at that size. But yeah, but wow. Yeah, but that is tiny. That is tiny. For a little guy. Oh my gosh. How long was it before you were able to see him?

Ruby (10:35.117)

Yeah.

Ruby (10:45.742)

It was about three hours.

Leah (10:48.532)

wow, that's wonderful. That's wonderful. We've just recently and if those of you who are out there listening and saying, gosh, I wish that I've heard more recently, a lot of folks have had a longer delay in being able to get over there. So I'm really glad that you were able to get there just for whatever they're going through or what the baby's going through. Incredible. I want to bring Dr. Barbo back in here to talk a little bit about the decision making process. So Dr. Barbo, what is

Ruby (10:50.115)

Yeah.

Leah (11:18.59)

the decision-making process for a baby who is diagnosed with gastroschisis. They come to the NICU, whether they knew before in like Ruby's case, or maybe they don't know until the baby's born. How do you make those decisions about when to procedures, surgeries, and how to progress them?

Dr. Barbeau 

There are two main ways surgeons repair gastroschisis. The first way is called a primary closure where the intestines are placed back into the belly and that opening is closed right away, just a few days after delivery. Or the second option is a staged closure where special bag called a silo holds the intestines in place while they're slowly moved back inside the skin over a few days to a week.

And now that decision depends on how swollen the intestines are and how big the baby's belly is. Sometimes it's just not safe to put everything back in all at once. Doctors and surgeons make the choice based on what's safest and most comfortable for the baby. And no matter the method, the goal is always to protect the intestines while they're growing and healing and to keep babies comfortable and safe.

Leah

So Ruby, what was Oliver's plan? You said when you were pregnant, you were unable to, they couldn't tell you, right? We're going to do surgery on day one or hour four or any of those sorts of things. I assume that all of those things need to go back into the body, and then we have to sort of start a process. What was the, I guess it would be a recovery plan for Oliver?

Ruby (12:04.75)

So I was told that the easiest part would be right after he was born and then everything else was pretty much unknown. His intestines were placed into something called the silo and it's just a plastic bag to keep everything moist. So that was the one thing I knew was gonna happen for sure. I didn't know how old he would be when he would have his surgery. After that, it's all unknown. So he had his surgery at five days old to close the...

Leah (12:11.638)

Hmm.

Leah (12:19.468)

Mm-hmm.

Leah (12:23.19)

Okay.

Ruby (12:34.37)

the hole and from there it was when he can breathe on his own, when he can eat, when he goes to the bathroom. So it was all completely unknown. But the main part of the plan was to get him home. What was going to happen during that, we figured it out on the way.

Leah (12:48.354)

Yes.

Leah (12:52.603)

Amazing. what like so for the five days, did they tell you what he needed to like, okay, he was stable enough? Was it an oxygen level or just him being well, that said, okay, day five, we can do it.

Ruby (13:09.442)

was told that it was just when everything was finally placed back in. And so it took five days. They had mentioned that, you know, the area is small because there was nothing in it. So they would have to push little by little just to get everything back in. And once that was done, they did the surgery to close everything up.

Leah (13:13.963)

okay. Wow.

Leah (13:22.37)

Mm-hmm.

Leah (13:30.07)

Wow, five days. Were you able to hold him in those five days?

Ruby (13:34.888)

No, I didn't hold him till he was about two and a half, three weeks old.

Leah (13:40.098)

Tell me about that moment.

Ruby (13:42.35)

It was amazing, but also terrifying because he was on a ventilator. He had a pick line. He had wires and things everywhere. There was beeping. So it was a great moment to be able to feel him. But also I didn't want to move. I just didn't want anything to be unplugged. But it was amazing.

Leah (13:47.542)

Hmm.

Leah (14:00.054)

Hmm.

Leah (14:04.65)

Of course. Yeah. So before the surgery, he was breathing on his own or was using some oxygen.

Ruby (14:13.482)

No, he was on oxygen the moment he was born.

Leah (14:17.256)

Okay. And then after the surgery, he was still on the ventilator for a little while. my gosh, that you talked about that feeling of like, it's like frozen, like you were frozen with him, but completely aware. And you had mentioned to me before you feeling the weight of his body on your body.

Ruby (14:20.951)

Yes.

Ruby (14:30.648)

Mm-hmm.

Ruby (14:38.626)

Yeah, yeah, it was amazing.

Leah (14:41.15)

I think, yeah, that's so powerful. I imagine for him to be back close to your heart. Wow. And at that point, I imagine he's a little bit intubated, not eating. If we have a ventilator, we know that's kind of a rule. How long was it before they started trying some food for him?

Ruby (15:10.568)

it was about when he was a month old. we began our journey in the level three NICU. And then a month later we were moved to, level two and that's where they started to try and feed him. And it was so exciting, but it just felt like two steps forward, one step forward, two steps backwards because he would do great. And then we would have to stop the feeding and he would have to get it through the pick line and the feeding tube and all of that.

Leah (15:17.57)

Mm-hmm.

Leah (15:21.506)

Okay.

Ruby (15:39.79)

because he just couldn't, it was too much for him to consume.

Leah (15:44.522)

Hmm. So it's a fun, like an issue of like, just too much work, too much to try to take in it a little bit. I mean, if we imagine our, our intestines, they're part of our, they go from our mouth to our gut to our bottom. And that's, it takes time to recover all of that.

Ruby (15:50.743)

Yeah.

Ruby (15:59.554)

Mm-hmm.

Ruby (16:05.698)

Yeah.

Leah (16:07.266)

What was your original plan for, like I talked a little bit in the beginning about our dreams when we think about when we're having a baby, were you planning to provide like your milk, breast milk, or were you planning to go to formula?

Ruby (16:22.03)

My plan was to do whatever was best for him. So I did try to pump while I was in the hospital. I didn't produce any milk. It could have been either I just couldn't or the stress because it's a very stressful situation. So we went to formula when he started eating. And then once we got home, we also stick to formula. I didn't want to try to change anything because I knew that he was able to handle the formula. So

Leah (16:28.747)

Mm-hmm.

Leah (16:36.875)

Yeah.

Leah (16:43.714)

Sure.

Ruby (16:50.446)

To me, I just didn't want to switch.

Leah (16:52.502)

Yeah. Were there any options available to you for him? Like at that point, like if you were starting to pump, was human milk available, like donor milk available, or was it just formula at that point? Okay. Okay. And did he need anything special for having gastroschisis? Was there even a formula created for that, or was it just like our usual formulas that we have for our preemie babies and NICU babies who have medical issues?

Ruby (17:02.355)

No, it was just formula.

Ruby (17:20.992)

Right, it was just regular formula. The only difference really was that the proteins were broken down a little bit more. But other than that, was just the formula that they had.

Leah (17:27.575)

Huh.

Leah (17:32.674)

Yeah, like a gentle that makes sense, right? If it's a little tummy's adjusting, you'd need something like that. Did he ever require fortification? We do that in a lot of our premature babies that are trying to put weight on. Did he ever any do any of that? Is that something that was caught for him?

Ruby (17:34.539)

Yeah.

Ruby (17:45.836)

No, no, that wasn't something that was presented to us.

Leah (17:49.994)

Yeah, so he was growing on the formula he had. my goodness. What other special care did Oliver need when he was there?

Ruby (17:52.461)

Mm-hmm.

Ruby (17:58.274)

so like I mentioned, he had the surgery at five days old and he, began the process of placing his intestines back. He, also was on the ventilator. He had a pick line. He did have a blood transfusion at one point. I think it was about a week and a half when he was going to have old. so each part of it was so critical and it was so overwhelming to watch, but the NICU team was incredible.

The nurses were amazing, the pediatrician, all the specialists, and they just all took such careful, compassionate steps to help him heal.

Leah (18:37.724)

What was done for you? Because you're talking about it very like, yeah, and this is a thing that happened, right? And I know you know that when they're like, we have to put a pick line in, it's not like, okay, great, right? Like we're doing a blood transfusion. Okay, great. What were things like you said, they were super compassionate, they were talking to you a lot. Was there anything else that helped you? You know, you have to go through these things, you have to make these decisions, you have to move forward. Was there anything else that helped you in those times?

Ruby (18:44.408)

Mm-hmm.

Ruby (19:08.268)

My husband, he was great. The nurses did answer as many questions as I had and they did their best. But again, they're not just taking care of my baby, they're taking care of a whole bunch of other babies. So they really did their best to ease the way I was feeling and to answer the questions. I feel that maybe having another mom to talk to that had been through this before would have been very helpful.

Leah (19:25.078)

Yeah.

Leah (19:33.834)

Yeah. Yeah, I remember wishing that when you were there too. Wishing that we knew somebody else. Yeah, somebody who's walked your path. That's something that I know now you'll be able to provide for our families too. You've done it off the clock and it's been really impactful for those families. So I really appreciate that. Yeah, so.

Ruby (19:40.941)

Yeah.

Ruby (19:45.326)

Mm-hmm.

Ruby (19:49.9)

Yeah.

Mm-hmm.

Leah (20:00.66)

Okay, so he was there five days, we have the surgery, making that progress, starting and stopping feeding. think just a little bit about that. That's something that seems to affect more NICU families than not, the feeding and growing phase of the NICU.

having those like mini or maybe it felt like major setbacks, was there anything that you were able to use as a strategy to help get through those? You know, when you're like, okay, we're gonna progress or even I don't know if this happened to you where they're like, okay, we're going home on Friday. And then they're like, well, we didn't take all the formula this night before so we have to wait another few days. Anything that helped you with those setbacks?

Ruby (20:47.982)

I feel that not having a specific date told to me really helped because I feel like if, if I had known a date and then we were set back, it would have just been even more sad and upsetting than the situation already was. So I think that was very helpful. I was there all the time. So I think just me being strong because it's no longer about me anymore. It's about my baby.

Leah (21:07.842)

Hmm.

Ruby (21:17.422)

I think that just kind of made the whole mood in the room a little bit better.

Leah (21:23.23)

That's good to know. Say more about that, that mood in the room.

Ruby (21:27.662)

I'm the type of person that if you are, if something you're going through something and you have a negative attitude towards it, I feel that that negativity is just going to linger and affect everything around you. So I was trying to be as positive as I could so that he would feel the positivity and the strength to keep going. And I would feel the same way.

Leah (21:52.48)

That's beautiful. But also a lot to ask for somebody who's going through a really hard time like you were. So knowing that that's how you wanted to show up, how did you fill, right? Like how did you support yourself or fill your cup or you just had like this iron will? Was there things that you said your husband, which I love to hear, you know, making sure you eating, sleeping, work, you know, walking, any other things that really helped.

Ruby (21:57.452)

Right.

Leah (22:21.802)

to allow you to endure that for three months. I mean, that's a long time to not lose positivity.

Ruby (22:28.408)

Right. And I have to say, I wasn't always like that, but the second I had Oliver, I was just, I don't know, I think other moms can attest to it, just something changes and you know that it's no longer about you. So that's something I learned about myself through this whole process that I could actually be positive and calm and take it day by day. But to answer your question, one of the things that was most helpful was

Leah (22:40.032)

Yeah, yeah.

Ruby (22:55.17)

Before he was born, we had a meeting with his pediatric surgeon and that was really informative because you, well, at least I went straight to Google and it was very unhelpful because everybody puts their two cents in and it causes a lot more anxiety than you should have at that moment. So the meeting with the pediatric surgeon, I think I still have the paper somewhere that he drew. He drew intestines, he drew the baby.

Leah (23:05.09)

Mm.

Ruby (23:22.83)

He mentioned a little bit about what the plan would be after birth, the silo, the incubator, the surgery. And it was just nice to have somebody walk us through and answer our questions. That wasn't Google.

Leah (23:36.234)

Yeah, that wasn't, yeah, yeah, we try. Don't go to Dr. Google. Yeah, that's, yeah, information from a trusted and reliable source that you felt confident. He respected you, you respected him, and you guys were able to move forward. So something else, you know, this is the NICU period. And I know one other big uncertainty is now you're going home, right? You're going home with a baby who has been through

a pretty and you have been through a pretty serious medical experience. Was anybody able to give you a this is what we can look forward like look towards or what we expect from that point forward? Or was there even a discussion about that?

Ruby (24:24.056)

There was no discussion. So that would have been something very helpful if we had a discussion about that. But for us, there wasn't. And then we went home and had to figure it out.

Leah (24:27.394)

Mm-hmm. Yeah.

Leah (24:36.96)

Was, did Oliver go home with any medical equipment or anything like that? Wow.

Ruby (24:40.916)

No, he didn't. And we had grown so reliant on all the machines. I could tell you what everything means, all the beeps, all the lines, everything. And then we get home and we have none of that. And it was a big adjustment because we were so reliant on it. a week after we got home, he was diagnosed with gastroparesis. And we didn't know that until we went back to the NICU a week later.

Leah (24:52.044)

Hmm.

Leah (25:08.125)

wow.

Ruby (25:09.324)

So it kind of felt like we could never fully breathe easily and was the constant back and forth. It was exhausting. He had a very hard time feeding, which is why we ended up back in the NICU. And that's where he was diagnosed with gastroparesis.

Leah (25:24.652)

Say more about gastric paresis. What is this?

Ruby (25:27.31)

So it's slow motility. And then because everything is going through your intestines very slowly, sometimes it causes a bacterial overgrowth and it makes you really sick, which is one thing that we still deal with to this day, not as frequent as when he was younger, but it's still something that every once in a while he'll get and we have to take an antibiotic for it.

Leah (25:29.27)

Mm-hmm.

Leah (25:42.54)

Hmm.

Leah (25:55.618)

So when he went home, he went home, everything was typical, but then very shortly after, he got sick. That was the first indication that something wasn't well.

Ruby (26:01.517)

Mm-hmm.

Ruby (26:05.452)

Yes, well, the sickness and not being able to eat and just not tolerating the food and throwing it up.

Leah (26:14.122)

poor guy. And we find that you finally get home after the NICU and your nervous system hopefully was starting to unwind a little bit and now you're back. What was that second stay like?

Ruby (26:15.032)

Yeah.

Ruby (26:24.419)

Right.

Ruby (26:27.822)

It was actually, I would do that stay again only because we ended up meeting the most amazing gastroenterologist there and I don't think we would have found out about her unless we went to that hospital and we still see her now every six months and she's absolutely amazing.

Leah (26:46.636)

Wow, the providers make such a difference, right? Wow. And was there a change in Oliver's plan of care from that point forward or his sort of his lifestyle? It's not a plan of care, it's his lifestyle from that point forward.

Ruby (26:49.794)

Right.

Ruby (27:04.501)

I was told that he could still eat and drink normally. And once he grows, he'll have less of that, know, slow motility issues and that he would just be a normal kid.

Leah (27:08.226)

Mm-hmm.

Leah (27:14.817)

Mm-hmm.

And you've seen that to be true, more or less.

Ruby (27:19.596)

Yes.

Leah (27:23.242)

What's Oliver like now? Tell us more about him outside of his intestines.

Ruby (27:28.12)

He is a baseball player. He loves baseball. He lives, breathes and eats baseball. And he has the most amazing relationship with his little brother. They're best friends. So he's just being a kid and he's doing what he loves.

Leah (27:45.484)

That's awesome. What grade is he in now? Lord. My goodness, I can't believe how big he is.

Ruby (27:47.81)

He's in second grade.

Ruby (27:52.458)

I know he'll be nine this July and it'll be nine years since I was introduced to ICU baby and started my journey with you guys.

Leah (28:00.788)

Yeah. Wow, you're one of the original families. Wow. my goodness. You mentioned before you wish you had had somebody who had been through it, like literally said, yeah, had a baby with, you my son was born in gastroschisis. What would you have wanted someone to say? Or maybe it's not something they say.

Ruby (28:06.178)

Mm-hmm. Mm-hmm.

Leah (28:29.61)

If you could have had somebody say what you wanted to hear, do you think what it would it have been?

Ruby (28:35.342)

I think having another mom or a family who had gone through something similar to this, somebody who understood what I was feeling emotionally, what the challenges that we are facing, what we would be facing, and they'd gone through that would have been very reassuring. The medical team provides amazing care, the nurses provide amazing care, but there's only so much that they can do. As I mentioned, Oliver's not the only baby that they're taking care of.

Leah (29:01.879)

Yeah.

Ruby (29:01.89)

So having someone that really understands the emotional roller coaster that you're going through, has to be someone who's gone through it themselves. Someone who can just listen and say, yeah, I've been there with the feeding. Take a day by day, step by step. that would have been, that would have made me feel a little bit less isolated and more confident navigating the journey.

Leah (29:15.562)

Hmm.

Leah (29:25.002)

Yeah, yeah, that makes sense. Yeah. So you have this beautiful platform now. What would you tell a family who's there now? I mean, I know we have across the country and across the world, we know with the prevalence of gastroschisis, we know we have babies, families who are by their baby's bedside. What would you want them to know?

Ruby (29:49.062)

to just cherish every good moment. and, and those are the moments that, that'll make everything feel worth it. You know, seeing the baby in baby clothes for the first time or seeing the baby smile. I never thought I'd be so excited for poop. So when they first poop, you know, just holding onto those moments and, you know, despite the challenges and how tough it would be just those little victories, just.

Leah (29:57.815)

Yeah.

Leah (30:07.871)

Yeah.

Ruby (30:17.858)

you know, hold on to them.

Leah (30:20.65)

Yeah, that's beautiful. We love celebrating every tiny victory. And it makes me think if I had my way, we'd have a milestone card for first poop. That would be a good one.

Ruby (30:31.04)

I mean, my husband and I, were, I think we were even cheering. We were just so excited.

Leah (30:34.754)

It is wonderful. We need all the parts to work. That's amazing. I think, we use the word a lot, in this world of, of the Nikkei, we use the word hope a lot. and I've heard you, you'd haven't said it out loud, but I hear so much of it in just who you are. Sort of it's your aura, your wealth, like your being is really living in that hope.

Ruby (30:38.606)

Yeah.

Leah (31:04.95)

What does hope mean to you?

Ruby (31:07.854)

To me, just means holding onto the belief that things can get better. The road ahead seems very uncertain with a baby in the NICU, but just finding strength in the small victories, trusting that even in the hardest moments, there's a light to be found. Now I just look at Oliver and watching him play baseball or seeing him smile or playing with his brother. That's hope.

Leah (31:34.242)

Yeah.

That's beautiful, Ruby. Thank you so much for taking a few minutes today to join and talk about Oliver, who is an extraordinary little guy, and so is Enzo. And your whole family are just wonderful people, and I'm super, super glad to have this chance to let you talk to our other families out there in the world who have this. And thank you, everybody else, for listening today.

If you're out there, maybe you have ours recovering from having gastroschisis or another genetic condition or prematurity or even a 24 hour monitoring. We want you to know that you're not alone, that Ruby and I are here with you and we look forward to sitting with you again soon. Take gentle care.