#391 - 👶 Belonging in the NICU during the Holidays

Hello friends 👋

In this episode of Beyond the Beeps, Leah MG Jayanetti discusses the unique challenges faced by families in the NICU during the holiday season. Joined by Alena Costume, a two-time NICU mother, they explore the emotional rollercoaster of having a baby in the NICU, the importance of community support, and strategies for coping with stress. Alena shares her personal experiences, highlighting the significance of parental presence and the impact of healthcare staff on the NICU journey. The conversation emphasizes resilience, hope, and the need for better support systems for NICU families. In this conversation, Leah MG Jayanetti and Alena discuss the profound experiences of families in the NICU, emphasizing the importance of nourishment, community support, and the unexpected connections that can arise during challenging times. They share personal stories about creating the Touching Tiny Hands organization, the emotional toll of having a child in the NICU, and the significance of hope and belonging in the journey of parenthood, especially during the COVID-19 pandemic.

Link to episode on youtube: https://youtu.be/WcNaJO66kxo

----

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

Leah MG Jayanetti (00:02.476) Welcome everybody back to episode 20 of the Beyond the Beeps podcast on the Incubator Network. I am Leah Jayanetti and I'm so grateful to be part of this Incubator team. This time of the holiday season, it makes me think back to the start of the Incubator, the start of Beyond the Beeps, and that gratitude. The Incubator team creates and shares the most interesting and profound literature, data, advice, guidance, and support really to the greater NICU (Neonatal Intensive Care Unit) community. We host the parent podcast and so hopefully you're here as a parent or somebody who interacts with parents, which should be pretty much everybody in the NICU. We're getting ready for the upcoming Delphi Neonatal Innovation Conference, January 26th through 28th in Fort Lauderdale. If you haven't been before, it is an incredible conference with the most interesting and top minds convening to discuss new and innovative ideas for the NICU. Go to the-incubator.org/delphi to register. I highly recommend it. It is an incredible experience to be with those folks.

So for today, speaking of that gratitude in the holiday season, the holidays are upon us, which as we're recording, it is day two of Hanukkah and we're about a week away from Christmas and many other holidays that surround here, which brings a lot of warmth and hope and gratitude and family and friends and celebration. But for our NICU folks, this also brings an incredible amount of stress to families and parents everywhere. So the things that come with holidays are extra challenging when you have a baby in the NICU. This is a topic today that we're gonna talk about those special circumstances being in the NICU, when family can't be near, when your friends are too busy and they can't help, or we have to keep them away because our babies are sick, or we don't have the time and energy to decorate a home or have a holiday dinner or try to cope with what's going on. For me, when we went through the COVID-19 pandemic, it was the first time that I felt like the rest of the world had an idea of what it was like to have a baby in the NICU. It was the first time where everybody had an opportunity to see what it was like to go through a hard time when you had to be isolated, or you couldn't have your friends and family around, or when the world around you became a bit more of a threat with illness, germs, logistics. You couldn't have a celebration for a holiday or for a birthday. You had to think really hard about who was around you and how.

This is an extra layer that our NICU families have to endure all the time. Thankfully, we're not in a pandemic anymore, but we still have to face these challenges every day with our babies in the NICU who are critically ill and fighting every day for their lives. And so how do we get through this and how can we do better here? How can we as parents, how can we as medical providers, doctors, nurses, social workers, respiratory therapists, friends and family, how can we do better for our NICU babies and our NICU families?

Today to talk with us about this is Alina Costum. She is the manager of health promotion and wellness at Barry University and previously worked at the Baptist Health System in Worksite and Corporate Wellness. She's also a two-time NICU mother. And following those NICU experiences, she founded an incredible organization, Touching Tiny Hands, where they believe that with every touch there is hope and every moment there is strength. We invited Alina here to talk with us about her work and especially because as we are recording this, I mentioned these are the holidays. And she was a NICU mama both during COVID and during the holidays. So her special skills cover all of this. And so today we are, I am so excited to have Alina here to talk with us about these extra special layers that go on for families in the NICU around these times. Welcome Alina Costum.

Alena Costume (04:50.074) Thank you guys so much. It's such an honor. I'm beyond happy, excited to share my experience, testimony, and to connect. It really is a journey like no other, but it is an honorable moment in time. So thank you all so, so, so much. And thank you, Leah, and the entire team, truly. I really, really appreciate it.

Leah MG Jayanetti (05:16.338) Yeah. Alina and I met at a, finally, physically met at a Give Miami Day, which is a big organizational event run by the Miami Foundation to really raise awareness with nonprofits that are running and upholding the city of Miami, particularly the county, Miami-Dade County, where we are both based. And it was those like minds that are quite beautiful, especially when we get to be in the same room. And that's where it came to this moment hearing of your story. So let's share a little bit, Alina, tell us a little bit about what brought your babies to the NICU.

Alena Costume (06:01.083) So, so excited with the details behind it and the way how we met. I think it was divine timing from knowing that the holiday is coming up and I left Christmas day with my firstborn. So I have two wonderful world changers. Uri, he was born December 23rd, nine years ago and my daughter born in COVID, the heart of COVID. So I'll start with my son. Both children, full term, healthy pregnancy, no complications. And my husband and I, first child, excited, it's the holidays. We knew that he was gonna be born in December no matter what, because of the timeframe. And when he decided to come on the 23rd, we're excited because it's three days after our wedding anniversary. So we're like, wow, a triple, you know, Christmas anniversary and his birthday all in one month. And normal checkup happened early morning, woke up my husband saying, hey, it's time to go. And he's like, you're joking. I was like, no, really it's time to go. But my water didn't break. So, but the contractions were so strong and we lived about like 35 minutes from the hospital at the time I worked for Baptist and I was also delivering at Baptist. And we lived in Hallandale in Florida. So the drive was, I was like, there is a drive. So let's, yeah, let's go. I was like, if it's, yeah, if it's false alarm, they'll send us back, but we just need to let's go. It's our first. So we're like, let's go get there.

All good numbers. Everything's moving along. And during labor, they mentioned like, you know, he's a little bit under stress. Let's go ahead and keep you only on one side. And it was just laying on my left side majority of time until it's time to push. And I said, okay, no worries. And they're like, you know, everything's coming along completely. Forty-five minutes of my hardest workout of my whole entire life of pushing and all of that. It was a work. But as soon as he came out, his heart rate during labor, it's dropping and it could be so many different things. And when he came out, they realized the cord is not only wrapped around his neck, but he swallowed fluid. And so they knew that there was something going on because his heart levels. And so the respiratory doctor was already at the door. When he fully came out, the cord's wrapped around. I had less than 20 seconds with him on my chest because my doctor's very determined. She's like, give her at least, can she at least have one minute? And the respiratory doctor was like, no, he needs to, his oxygen level is dropping. So I got like 20 seconds, like plopped through like football, like husband take, let's go. And I had about 20 seconds just to just have that connection. They took him, so my husband could cut the cord and the respiratory doctor was like, I need him now. And so in my mind, I'm like, what is happening?

Never at the point with my OB or any of the doctors, they really talked about the NICU. Nothing of that was brought up. So I had no idea what was, I'm thinking they're just taking him to just do oxygen, like normal hospital oxygen. And when they took him and I said, Jean to my husband, go with him, the doctor, she's gonna do what she needs to do with me. I will be fine. And he's like, are you sure? And I was just like, we don't know where he's going, go and just watch. And so they took him and the nurse came in and explained to me what's happening. They're like, he swallowed fluid and he pooped. So he has probably going to have an infection. It's called meconium aspiration. So I'm getting, you know, sutured all done down there, care nurse is on one hand, other nurse telling me what's going on. I'm feeling everything. And I'm just like, I just given birth. So this is happening all in less than 10 minutes of me giving birth. And my doctor, after the nurses shared everything, she stayed in the room with me until Jean could come back, which was just really incredible for her to stay and wait, which is so just her heart and kindness of that, because she didn't have to. She was done. She was caring. She was like, now it's on to the NICU doctors and nurses, but she knew the relationship just to rebuild of that moment in time. And when everyone left the room, she's like, okay, let me re-follow up because I was down there. They're talking 100 miles per hour. I have no idea where you are right now. And I'm like, what is happening? And she's like, you didn't hear nothing. And I'm like, what is happening? She's like, your son is going to be, you know. And she took her time and broke it down. She broke down as much as she could as an OB. And she gave a reassurance of when you walk into this room, know that it's not what you, there's no emotions that I can explain to you. So just be prepared to embrace whatever this looks like. She said, you had a healthy pregnancy. You delivered well. I delivered, I labored in seven hours, completely fast. She's like, you came so fast. He came so fast, but thank God he did because of what was going on. And she's like, there was nothing that I could have prevented or you could have prevented. That was her keywords because guilt still came upon me, but still having that point of just those words, she's like, there was nothing we could have prevented behind this.

Leah MG Jayanetti (12:15.022) This is amazing, because what I'm hearing is she's not, there was a point when everybody was talking at you. They're talking, you said there was somebody over here and there was somebody over here on both sides of you, on one hand and on the other hand, and they're just talking and talking and talking and talking. And then she talked with you.

Alena Costume (12:33.636) Talked with me. Exactly. And that is so important.

Leah MG Jayanetti (12:36.086) Yeah, she was like, where are you? How do I make this make sense? What an incredible person. And that presentation to, yeah, and to prepare like the expectations. She helped you, like, you can't prepare for this. Even that to say you can't prepare for this, what you're going to see and you don't know how you're going to feel. That alone, I think, offloads so much of the stress is being able to say I'm going to, let's see. Let's just be curious about this. Okay. Wow.

Alena Costume (13:06.874) Yeah, yes. And so she leaves, Jean comes in and he obviously is just like, what is happening as well? Because on his end, he sees them fully take our son, and then he stopped. They're like, you have to wait. We now have to do everything we need to do. Door closed, boom. So he doesn't even get into the NICU because they're like, we have to prepare him to stay here. So he stood there for a while waiting, at least for someone to come out and just say something to him. And that didn't happen because doctors or nurses are also tending to the other babies that were in there. So then he gathered himself together to walk back because he knows I'm going to ask questions, 100 miles per hour with my questions. And so when I saw him, we just had a moment just to cry. We didn't know. He just broke down and it was a surreal moment of just like the unknown, of what was ahead. And I let him experience his emotions out and we did, we just cried together. And I shared with him what our doctor shared with me to give him some, because again, we had no idea what this was and the journey that was ahead. So after, we sat and wait until more updates came.

Leah MG Jayanetti (14:50.254) That makes me very sad to hear. I'm a big advocate of parents being able to be part of the admission, or part of the baby's experience. We've seen it successfully done in some places, and obviously that's not all the time. You can't all the time be there. But there's very little things that if the team, the doctors, nurses, whoever it might be, were prepared for a parent to be there, that the parent really could be there. Like the door shouldn't have closed, that's the dad. You wouldn't bring a, I mean, short of, the things we don't do with our newborns, or the things we don't do with our children, we do to the newborns. You wouldn't separate a parent. I mean, absolutely, of course we're gonna go into surgery, there's certain things that are happening, yes. But that onboarding. And I'm so sad to hear that nobody came out. Nobody was thinking of you guys besides your OB, which is great. And this is not rare. It's not rare. It's a chronic thing. And we've talked about it in lots of these episodes as somebody has to go, there's parents outside or can this parent be here? Can this dad stand here at the top and look at the baby's eyes and have a job? Like dad, I need you to let me know when he changes color, whatever. I need you to let me know, okay, this is what's going on. This is what we're doing. This is why we're doing it. Onboard the dad along with the baby. Let's go. He's there. Okay. Indeed.

Alena Costume (16:24.768) Something. Yeah. And minutes seemed like hours. So it was like just minutes, but it felt like hours. So him just standing there waiting to walking back to them quickly coming back into the room, it was just like, felt so long for us in that moment in time. And you hit such a great point of just like, I'm pretty, I'm hoping, and I know now it was nine years ago of these different moments in time, but that one moment for him in the first experience was so important. And to just explain like, hey, there is something emergency going on with another baby. So our policy is this. That's why we could, like, it was so many different layers and he would have not probably heard it, but it would process later saying, okay, this also makes sense. Instead of feeling like there's no kind of communication in that moment in time.

And so we get back, the doctors come and share exactly what's going on with him, tell us how the process is to get into the NICU and what we're going to be seeing and experience. This is now the NICU doctor that came in and talked to both of us, which was wonderful because the amount of questions and thoughts and everything, that was great. And he went first because I still had some just a little bit of complications, just they wanted to make sure like my blood pressure and different things before I got up. I was like, I'm ready to walk and they're like, let's wait a little bit. And I gave birth vaginally and walking wasn't, I was ready. Everything was there like, you just give it an hour and I'm like, no, hour is not happening. I'll give it like 30 minutes. And so he went first and took, I was like, no, take whatever notes you can because we don't know what this is. And so I was able to then go in and see, and I'm very grateful for my OB explaining the first initial what it's going to be like. So like, when you walk in, you're going to pass by other babies that are very tiny or very sick or all of the above. She's like, remember your son is full term. And so when I walked in and saw that he was and is the biggest one, I said, I just did that. Okay. He looked such a giant. Yeah. I was like, he's gonna be okay for right now. I was like, cause if she didn't say that, I would have been like, is he alive? That's what I was like, is he going to be okay because you're passing by so many babies at different sizes and their health and they're strong little warriors. And so I saw him and the only thing I could touch was his hands and feet because he had the oxygen tube down his throat. He had all the everything and everything on him because they're just pumping out. He's swollen too. Within those few hours he just had, he swallowed a lot of liquid and so he was swollen.

And then he was there for 10 days. And in those 10 days, we left on Christmas day. We got discharged. So from the 23rd until Christmas morning, we visit, rotated, everything, got the reports, and they're like, this is what's going on, his levels, the oxygen with fluids. And from the 23rd when we got discharged I said we were not only confused still but we're like we're supposed to go home. They're like yeah the policies is vaginal birth three days and you're out and I'm like out where? What are you talking about? My baby's still here. Why am I not supposed to stay? They're like that's not the policy. Another shutdown. And so Jean went to go follow up and talk and be like, so then what's the process of coming back? They're like, you can visit here as visiting hours. There's a schedule, you know, two parents at the time, and this is 2015, so different from COVID. So all of these different, and they're like, you're going to get discharged. So you need to go back to help your wife get everything that's needed because discharge is coming. And I'm sitting there like, this is the worst day. This is supposed to be the happiest day, holiday, lots of just, we're not, no way. And I'm swollen too because of the stress and just so many different things. I remember looking back at pictures and I'm like, I did not look like, it's just insane. And so friends and family are texting us, they're excited, they know that he's here, they're like, what's going on? What is the NICU? What do you need? And it's just not only that aspect, parents want to come down, they're like, no, you can't come down, we're actually getting discharged now. And so answering all of that, understanding his care, they're like, we can't tell you how many days or months he's gonna be in here. I'm like, months? They're like, it can take months. And so we're preparing that, so now we're discharged. I'm getting wheelchaired out, get in the car, we're driving back to our home in Hallandale Beach and a friend calls and she was just like, gather your whole entire life and come back down. Cause again, we're 30 minutes away. I have a guest room that we want you to stay because we're literally six minutes away from the hospital where you're at. And this is friends who just heard like, and they're texting, everyone's texts and keep, keep the family in prayer. This is going on and the chain of community and communication that went rapidly fire on Christmas Day when other people are with their family and for this friend to say, come back to our house. You're going to stay there as long as you need to cause to drive back and forth. It's going to be insane. And she knew of someone because she was a nurse practitioner. So she knew just general medicine care about what this would look like. She's like, there's no way that you're gonna have the remote energy to just always 30 minutes there, back, or spend all day just sitting and then sitting in the lobby if they're having a surgery with another baby.

That day, that Christmas day, I remember hour by hour, I will never forget that Christmas of navigating the emotions of leaving without him and the support for my husband of navigating just questions upon questions, because I was just not, I was there but not there and getting the call from the friend to be close by. There was, it was fear, hope, mixed emotions, highs, lows. And when we got back, probably like four o'clock that day, because we really did pack up our whole entire house because we didn't know what to expect coming back to this friend. And I was just like, bring everything. Cause I'm like, if we get him home and they say, well, he has to come back to the hospital for checkups. And I was like, we're not, bring the bassinet, ask her can we bring it. Like it was, we brought everything. She's like, nope, don't worry about the bassinet. I have, she had little ones too. So, and when we got that Christmas day, there was, I remember a present being on his incubator. And I was, it brought a smile just for that moment. Like, oh my gosh, today is, it is Christmas. Like, cause the days were just going. And I knew it was Christmas because obviously, out of all that moment in time to get everything together and then having a moment to see him again. It was just the fact of like, go and get to see him again or get to hold his hand or what's, you know, and there was a present and it was such a gift that I still have this letter from this mom that she, in her present, it was simple stuff that she experienced and needed. And it was her letter of hope that her son had four open heart surgeries during his time in that particular same unit and her just sharing her experience and reassuring hopes and her pictures were on there for when he was, open heart surgeries to where he was at now thriving of healthy life and going. And it was that moment in time because she knew Christmas was so important because her son was there on Christmas day of giving hope and reassurance of trust the process, lean into the emotions, lean into the community and know that they're stronger than we could imagine. And just showing up is what she left off with. She's like, just show up, whatever the show up looks like, just continue showing up. And it got better each day because he got stronger each day. And my husband and I tag teamed with different things of dropping off the milk. I was very adamant once I learned on the timeframe the doctor's report would be at 6:45. I was like, if one of us is not there to record, I was like, what exactly is needed because it's still the holiday time. Family was like, can we come and bring you guys dinner? We had, you know, meals and different things. And we told them like, carry on. It's something, both of our moms and dads were just like, how can we have a Christmas still without you guys here? And I'm just like, I don't know what to tell you. But what I can tell you right now is this is where we're gonna be. Yes, you can come down and visit and sit and they did that as well to give us a break so I can go home and sleep or just take a hot shower or just those simple minor things that we fail to, we don't take for granted, but it helps the self care and the mental and wellbeing. And then it's like, get the house ready still. Like the house is ready, but still get that ready.

But we were there for 10 days and the nurses, there's one particular nurse is like, my son went through this and you know, the rotation during that time too, they had nurses that they had their time off. So the normal nurses that would normally be there weren't necessarily there. They had part-time nurses. So it was a very lots of changing nurses because of the holiday time. So we're talking about two major holidays. It's Christmas, New Year's Eve and Christmas Eve, Christmas day, then we have the approach of coming up with new years. So people who are just normally not there and that one nurse, I remember she just sharing her story. She's like, my son had the exact same thing your son is going through. And she was open and she was just like, the way how you have such a strong hope compared to where she was. She's like, I was a NICU nurse still then. And I knew exactly what her son was going to go through, but she's like, just being in it was so different. Being a mom and being a nurse was so different. And so she gave me another boost of hope. She's like, my son was here for months. She's like, the way how your son is such a fighter. She's like, this morning we had to fight your son to put on something because he's so strong. He's going to be out in a couple of days. And I was like, are you sure? I was like, just looking for just reassurance. And I'm a woman of faith too. So my prayers, the church had wonderful prayers, like lined up and I was getting so many, those different encouragement, but it was also different from hearing from another mom that then she was also a nurse that said, your son is a fighter and he is going to be out here in days. And I was like, you're saying days. What does that look like? She's like, I can't give you that amount, but just knowing that where my son was at this age and your son at this age just know, and she was right. He left New Year's day with him home. Home like, no, go home home. He's healthy, lungs are clear and his lungs collapsed. He got an infection and his lungs collapsed. And I remember, I don't remember which day, but I remember walking down the hallway and you know, you as a parent, you know your child's cry. It's really interesting to know how early you can, and I remember walking close to the door to scrub in, because you scrub in and get your nails and all of that. And I hear him from the door crying, screaming. And I said to my husband, I was like, that's Uri. He's like, how do you know? And I was like, that's our son. Like something's going on. I walk in and one nurse is like getting our note, I can tell she's looking for like on the phone, getting ready, I guess to call us to tell us that all his veins blew. And so he's getting dehydrated. So they're going to get ready to shave his hair to do the vein in the head because they're like, it's bad. I'm like, whoa, tears are starting to come. And Jean's hand is here because he can, he doesn't know which way I'm going to go if I'm going to scream, cry, oh my gosh, or get so mad of like, busting them out. Yeah. Bust out because I'm just like, why didn't you guys call us earlier? I don't understand in the moments in time, don't we have to sign off on this? And I was like, I was like, give me one minute with my son to calm him down. Give me a minute. Like, but I'm screaming and Jean is like, he's like he knows not to tell me to calm down. It's like give me a minute so I can calm him down. So I go to Uri and I'm like I'm here. I'm here. This is what they need to do. Let's calm down together because he can, I was crying as I'm like, we need to calm down together. Like I was like you're upset I'm upset we're both upset. Let's just, they need to find a vein. They need to find a vein. I need you to calm down. I'm calming down too. Jean's just holding my hand, holding his feet. And the nurses are like, his, not pressure, but his heart rate's slowing down. And a new nurse comes in. She's like, let's check his feet. And I was like, they're gonna check your feet. They're gonna see if they find a vein in your feet. Like all of this, talking out loud, loudly though, but like calm down, I'm here, I'm in your face, because they had it open so I could actually be close to him and like touch his face and like let him know like I'm here. They found the vein in his foot.

Leah MG Jayanetti (32:39.402) That's incredible. I mean, what you're telling us is something that is, it came naturally to you, which is incredible. And it's something that we wish and try to help people get to is that he needed you to figure this out. You telling him what's going on, obviously it's not going to be like, okay then, right? Like his brain isn't ready to like make that as a memory, but what he needed was that co-regulation. He needed mom to come in and start telling him what's going on and to say, I got you, babe. Listen, we got this and we're gonna get through this. This is the thing that is so crucial for our babies is why, and for having parents with their babies is because they make a difference in the baby's wellbeing. They can recover from stress. Look at what happened with Uri. He wasn't blowing out his veins anymore. I mean, wow.

Alena Costume (33:32.196) No, no, it was the nurse who did it in the foot, she's just like, and she said the same thing, wow. And I went into a different mindset. And when I saw that moment, even Jean saw that moment, we went into a different mindset, one of us has to always be here now. Like we really have to start tag teaming and thank God that he was able to be there. And if it wasn't going to be him, if it had to be one of our parents or someone, because I'm like, I cannot mentally know that if there's something in emergency and a quick decision, I was like, if we were 30 minutes late, or just 30, not late, but just 30 minutes just coming in for whatever reason, and they're calling and saying, this is the decision that we have to make right now. We need to make the decision of shaving his head and getting this vein because of what's going on, we would have to said yes, because we're 30 minutes away. Like, okay, go whatever it is to save his life, do what you need to do. But if it wasn't me, if it was Jean there, if it was someone else, then he was just the calmness of that moment in time. And I know the nurses and everything, like they were doing what was needed, but he was just, for whatever reason, just not having it. He was losing it. So, and it wasn't that, yeah, it wasn't that getting a vein in the head is really great for babies because they can't reach it. And so the accidental pulling it out is, I mean, it's frightening, it's scary. I've walked so many families through it, like this doesn't go to the brain, it is, you know, it is just, but it is very frightening. I think you're right. It wasn't so much what was gonna be done. It was how the experience was gonna happen, right? It was this doesn't have to be extra stressful or traumatic if we put mom and dad back or somebody there to lower the volume in this room. Like, let's, you know, we can do this, he's gonna feel better, he's gonna calm down, his pressures are gonna change because he's calmer, you're calmer. It doesn't have to be that way.

So how did you, I've made so many notes to go back to, but how did you, how did you and your husband make that shift to have somebody there all the time?

Alena Costume (35:55.142) We knew that we needed sleep, so we started with sleep. And how he's a late hour person. And even when we got home with Uri and moving forward with our daughter, both kids, he would take the night shifts always, because he just loves to stay up to like two, three o'clock in the morning. And I'm an early bird. I am eight, nine o'clock. Like, let's go to, we've always been. And so, he made that suggestion of let's do what we naturally do as a couple. You like to go to bed early, I'm up late. If the hospital allows me to be here these late hours, I will be here. And that's exactly what happened. He's like, I will come back to you and get your breast milk. Because that was also a certain important thing that another nurse shared about the breast milk and getting it to him because he was doing the IV feeding and through all of that. He's like, I will come during these, the morning hours that you pump quickly so that you can go to sleep. And when I need to go to sleep, then you're here. And it was a big sacrifice because you're talking about hours being at the hospital. And we knew that we needed to also have moments and break away from the hospital and being at our friend's house, being close was great. So I would take the morning until lunch and if there was a surgery happening in the room, step out and wait until I was just like, had a nurse and I'm like, as soon as I can come back in, please let me come back in. So I had books, I had my music, I had my chargers, I had all these stuff that I just learned on each day, what else is needed, extra socks, extra change of clothes, just all of it. And each day that he got stronger, the day that I was able to breastfeed was a whole nother emotional aspect as well. I did the morning shifts, lunch, I went home to rest and have lunch and he came and then the night shift and just so we just rotated that way. Our family is all up north. So family really did come because of the holidays. So they still have their hours at work, getting things together. When they did come, that's when we took full advantage of going back to the house and just, do we need to shower? And we had the community of meals. So meals was never an issue to worry about because there's always something, someone saying, did you eat today? And really asking me, did I eat? Not like, did you take three bites and you put it aside because you just got a phone call or you're taking notes or you're following up. Like watching me finish a whole meal, at least one a day, and my husband. And friends also making sure that he was okay because he was carrying such a different weight as well. Being acknowledged was something he advocated so much more with our daughter because of how he felt. He wasn't, he was a present, still present husband, father, everything, but just the fact of just like me saying, hey, look at him instead of more talking to me because I know what I'm going to have. The second round was like, talk to him, make sure you're looking at him. He's like, hey, I'm here. She knows what she needs to do. I know what I need to do. The first round was like him making sure he positioned himself next to me. So they recognize that he is the dad and he's here. So please make sure that you are talking to both of us. Cause you're gonna see him as much as you're gonna see me. Cause of that schedule that we decided to go around. So it sounds like when, for your Uri's experience, which was around the holidays, I think what I hear you talking about is that your family included you. Like they didn't say you're over there. They did what they, they recognized that things had to be a little different and said, all right, how do we pull you guys in? How do we come around you? I mean, same thing with your friends. They said, all right, I'm gonna reach out, I'm gonna make sure that we can include you in some way. They took shifts, they thought, okay, what would it be for me? They really had that compassion, so that's empathy plus action, to say, I don't know what is going on, but they didn't stop them from doing something, right? Which is hard. Most of us, a lot of folks are kind of frozen in that, like, I don't know what to do, I don't wanna be a burden or further problem. They really said, all right, how can I include this family in the holidays? Like you said, you guys couldn't be there, but they were like, all right, so then we'll try to come and be there. We'll work you into this way. We'll make sure that you eat.

And the other thing that I really heard too was in the staff, and this is a very important thing for our folks who are in the hospital, in the NICU, in the holidays, is the staff changed a lot. Like I think for most of us who are there already, day and night shift is different. Feels different, it's different. Weekend shift, another difference. Feels different, all different. Now at a holiday, right, you said there was Christmas Eve, Christmas Day, New Year's Eve, New Year's Day. Then there were weekends and then there's days and nights. And so the people are really don't get that continuity that we crave when everything is upside down. And just, I think, talking about that here, and I'm so glad you brought that up, is very important because it's a way that we can help our folks who are there now manage expectations. And just like your OB did for you, like, we don't know how it's gonna feel. This is what we know. This is what's gonna change. Expect that. But know that it's not forever, and it's gonna go back. I think that's a very important aspect that you brought up today that I just wanted to reinforce for those listening because it is different. It's really different day to night, weekend, holiday, and now you're doing it back to back at this time of year.

Alena Costume (42:20.782) Different. Holidays. And one nurse that I saw, I didn't see her when we got discharged. That one nurse that shared her story. It was just that moment in time. It was just that day during her hours. I did not see her after that.

Leah MG Jayanetti (42:43.406) Well, there you are is the value of you never know who you're touching. You're always being a window, right? Like she shared that with you and you may never see her again, right? Like she was just kind of an angel in that day. And that's spectacular. And you to be open to, that's the other thing is for us as families is, you never know who's going to step into your world here. And it might come from a place you didn't expect, like the gift on top of the isolette, right? That person dropped those off. There's all these little windows there in the NICU. And sometimes we can't, we really have to focus. And if you're listening, I have my hands around my eyes, like like blinders, like it's normal for us to really put the blinders on and be like, I need to focus on this. But when those people come in, when little lights start to shine, allow it to come in if you can, just a little bit, just a little bit, because it really opens the horizons. Wow. I mean, I think your experience is quite profound. And the other thing that I heard a lot, and this is where I want to talk to you a little bit about touching tiny hands, food, food's very important, nutrition. Nourishment, let's say nourishment. You mentioned it a couple of times, people brought you food. You made sure to eat and really nourish yourself. Sometimes we have to eat to live, right? I tell folks all the time, set an alarm every three hours your baby's eating, you have to eat a handful of nuts, yogurt, a smoothie, yes, but that nourishment. Water, yeah, water, water, water. Coconut water, whatever it is, water, get it in there. But that nourishment is a different level. Tell me a little bit about the moment you shared this story with me in the past when you decided to create Touching Tiny Hands when you were in the lounge.

Alena Costume (45:00.036) So, with my daughter was born during COVID and we met a family. I'm warming up my lunch that my husband brought and a mom and dad is there sitting, eating their lunch. And I can tell the dad that he just finished emotionally seeing their son and crying and they're not talking. It's very, you can tell in those cold moments, there's a lot going on. And I sit down. This particular hospital had their doctor's lounge turned into a free NICU parent lounge that you could stay. There was four rooms and a kitchen, and it was literally the door right next door was the NICU door to go into the NICU. So very close by. And I shared, I sat down with them at this community table and introduced myself and the mom said hi, introduced herself. The dad said hi. Jean comes back up and we're just having very short, small talk. And I asked them how long is their child in the NICU and they said, this is our third and we are just embarrassed. And dad starts opening up a little bit of the fact that we don't know what we did wrong because we've never, with our other two, didn't have this experience. And so we're having lunch over the conversation. So Jean shares his story as a dad to another dad, reassuring them that if they're just saying, your son needs to be here for 36 hours, just for a minor precaution, just know that, this is not, first of all, it's not your fault. We shared that same kind of hope that our OB doctor gave and let them know. And we then went into our story and sharing, and I looked at the mom and said, what we're doing right now is one of the biggest things for you both. Eating, making sure you share, because they're like, they didn't want to share with the family the baby was born. And I was like, you have people home right now with their other two, right? And they're like, yes. And I was like, we have a son home with our, you know, a family member that now this is COVID. And the biggest thing that we get to do right now is moments like this and having this moment of sitting down to eat because he's going to come home healthy and strong is what your doctor's shared with you. Right. And she's like, yes. And the dad is like, yes. And I was just like, dad, experience all the emotion, mom experienced the same thing and Jean and I are saying, listen, this is our second rodeo. And they're like, what do you mean? I was like, our first was in the NICU and now we're here back again. And we're sharing that moments like this, me having the strength to warm up my food. None of this happened before. It was literally hand hold with me for my son, my first. And having the strength now to warm up a meal, remind myself that this meal is going to get my baby out of the NICU because of the breast milk and I'm going to be stronger and I'm mentally going to be able to receive all this information again. I was like, I'm still fearful. I'm still very, the unknown with her case is completely different than my son. Every hour is different for her. It was hour by hour. And so when they left, it was a hopeful moment. They said, thank you. And her husband said, we haven't really been able to eat because of this unknown. And thank you for just the community meal. It was what we called it, because we're at a table together. And I turned to, they left, and I was like, I'm sure I'll see you the next two days, or hope to see you the next two days, because of the timeframe. And I turned to my husband and said, I think we need to just create a Facebook group. And he was like, no, this is beyond that. It's something more than that. And Touching Tiny Hands formulated after my daughter. And one of the bigger pillars in the organization is meal care, care meals. We experienced it with our son, like unknowingly how much it was needed, but with our daughter post COVID, months of meals coming to the house, months of meal, when I say months, at least a solid three months. And it took us back to that moment with that family, sitting down, eating as much as you could and want, but a conversation and the reassurance that this meal is beyond me. It is for my child. It is for, think about every meal you had that's great with friends and family. It gave you a sense of like just joy, looking forward to something. And so the care meals is something that if you're in a NICU, if you're out of the NICU, we will provide because we know those little moments matters. That nourishment matters because you need the strength. And the care meals are for the parents, the caregivers, the grandmother, the friend that might be there because we, every family situation is different with their families as I have to go back to work because I only had two weeks and I now have to be away from, so the care meals are for that reason because it gives you the energy. It gave me a reminder that I have to take care of my wellbeing. The drinking the water, you just mentioned the hour, the hour clock, when I would pump, I'm like, I need to make sure the water is close by. And it was a reminder that we underestimate how much of the meals were needed because my first time to my second time with Remy, I knew this is the clockwork schedule. Like I mentioned, Jean was like, you know what you have to do, mom, Alina, you know you need to eat every three hours because you're pumping and here's your water bottle. And he's like, the unknown is where we don't know this second experience, but we knew exactly what we learned from our first. And the care meals were just such a wonderful blessing. And during COVID, we obviously made sure and everyone also made sure that they weren't sick as well because that meal is obviously going into my system, which the milk is going to go to Remy. So we were very, very cautious and mindful of that as well. Grateful that people wanted to, but we also said, do you mind if it's not so much a home cooked meal, if it is to make sure that you are also safe and if it's something that gift, it was the list of it goes on and on. So Touching Tiny Hands Care Meals was created out of that conversation of that family and the whole entire organization because I was just more so the community aspect and knowing more of how the nutrition aspect helped more with my breast milk. My breast milk came in so much more faster with Remy during COVID than my son. And I knew because of what I knew what to eat, the high protein, dense, like all of the above, the water intake. I actually called the breast consultant when the NICU doctor came and after told us the report of what's going on with Remy and, a little bit share what her, her NICU story is. She was born with high, full term as well. And, NICU, COVID was very, very, you know, isolated. So all of my doctor's appointment, I was alone. Jean could drive me, but he could not come in. She was born again 39 weeks as well. Great pregnancy, no issue, completely fine. Considered high risk because of my age. I gave birth with her at 39. And so a lot more doctor's appointments, even more so with COVID. Every two weeks I got to see her. I was very happy. I was just like, wait, I get to see her every two weeks compared to my first? That's brilliant, great. So, right? And her delivery was five hours. So when we got to the hospital, they were like, we first need to test you guys both to know what floor of the hospital you're going to go for COVID. And I was like, wait, stop. And they're like, news. A week ago, your husband couldn't be in the room. But this week, we knew policy changes. He can be in the room. Another emotional like, OK, this is wild. I didn't know any of that until we got there. So the COVID test went from six hours to... So you were going into it just for clarity. You were going into this thinking that you had to do this by yourself, that Jean couldn't be there. You didn't know.

I was going into not knowing that I had to deliver by myself. No, I didn't know. I thought he could be there. Yeah, I didn't know that. I thought Florida was a little bit different. So all the policies that we're reading beforehand, it was at this particular hospital, Memorial Hospital, it was fine, but then it changed within a month, but then it changed back the week before. So it was, every day was different. What the nurses in there. And then what was very, the only thing that we didn't know was the COVID test was going to take between five to six hours for the results to come back. That's the only thing we didn't know. And I was worried, yeah, because the test was so, it was a longer time. I was concerned because Uri's labor and delivery was seven hours. So I'm expecting Remy to come around the same time or even shorter. And she came shorter. She came within five hours. And so when I got there, I was already over four centimeters and I was asking, if she comes less than the COVID time testing, where do I deliver? They're like, right here in this waiting room. And I said, you guys got to be joking. This is not real. They're like, we've had it. We've had two. And I was like, because we don't know if you're positive or negative, we cannot let you on the floor because they had the hospital, the labor and delivery, separated and I said, oh my gosh. And so they're like, we will keep, yes, yes, he was with me. And so he runs to Chick-fil-A because he was just like, I knew what was happening. He like, he runs to Chick-fil-A. It was wild because he's like, they're saying food and this, they're giving us. So now we're paying full attention to so many different things compared to our first. And so he's just like, I'm going to run and get something to eat because if they're saying this is the hours, this is the food that it's only going to be like so many different COVID policy. So he runs and get the Uber Eats that he had ordered. He comes back up and they're like, okay, the test results. I'm moving along fast. Like centimeters are just hour by hour and they're like results are back. We have her up to negative. She's on the negative floor. Dad, he also had to get tested. Dad, negative floor. Scrubs us and everything. And she's five hours. Done. The day, amazing team. Amazing. The nurses were like, let's get you walking. The pillow, it was just a different experience. Cause with Uri, I could only stay on my left side because of his heart rate. Remy was thriving. She did great. So I'm like, wonderful. Delivered five hours. Congratulations, mom, she's healthy. I had the full first, the experience what I wanted the first time, I had with Remy, holding her, got the breastfeeding, everything's good. Then two hours later, some test results comes back and nurse is like, hey, we're gonna do some more tests. The numbers are a little off. She looks a little yellow and I'm like, yellow, yellow, what does yellow mean? Jean, look up what yellow means. And she's like, no, yellow means, you know, you know jaundice, did you have jaundice mama say yes, I had it. My mom I remember she telling me, like, it happens all just the common conversation. Happens all the time, don't worry if it's a little high in a couple hours her body would bring it back to normal, okay. Another hour pass. NICU doctor walks in. We need to take her right now, and I'm like, did the big sigh. We have four hours before she becomes permanently brain damaged. And we just brought in all the UV lights from all of the other hospitals that we are close by, because it's Memorial Hospital, so they have their other hospitals. So from that hour when that nurse did that second blood work, they already knew. The NICU doctor went ahead and called additional lights, because Remy was going to be in an isolated room by herself for four hours to get her levels down before they decided to helicopter her to Joe DiMaggio. So the doctor, she's telling us all of this and she's like, you guys are way too calm for my liking. What is going on? And I was like, this is our second rodeo. And she's like, she did exactly as she said, okay, I'm talking to parents who've been here before. I was like, our son was in there for 10 days. Give it to us straightforward. Look at him because I am just going left right now. Tell him everything because I need to go ahead and know what my plan is on what this now new experience is going to be for her. So they broke it down. She's like, we have four hours because of her levels. And when I heard brain damage, I looked at her and I said, what are you doing? And she said, I'm overriding my director who told me to bring her to get her in a helicopter. She's like, I believe that our team here could do everything. And I said, do everything you guys need to do. And I said, immediately call the breast consultant, the lactation to come massage my breasts. If you're saying milk helps, bring her here now to get these going. And I'm crying the emotional toll of hearing that you're hoping it's a hope. It's not a guarantee. You're hoping these UV lights, they brought 10 on Remy, who was born 39 weeks, little over, under seven pounds to get her at a level what's needed. They needed her to poop. Great, full. She's fully another big baby in the NICU. She's one of the bigger ones. Completely different experience. So we went through that process of the four hours of waiting and they tested the blood level every hour and it was slowly going down and that's what they needed to see.

Leah MG Jayanetti (01:01:01.73) Yeah, that's scary. That uncertainty.

Alena Costume (01:01:05.371) It was more scarier with her than Uri because of, now we have COVID and we are, no one can visit. So now first born, people in and out, we're fine, people can come, relieve. But then isolation, it's only Jean and I. Jean, I, and the nurses. And when Jean could go home, rotating, both of us could not be in the bedside, especially because of Remy's room that she was in. It was a very smaller room that fit her bed and chair. And I remember having the pumping machine there. And then the doctor's lounge, only one of us could stay as well. So that was another different experience. So he went home a lot at nighttime to relieve family members, the three family members, because we also made sure they were tested to be with our son, Uri. So he went home just to sleep, be with Uri, to wait till the next family member could come. And I stayed at the hospital. I was in there for seven days. Stayed for the seven days with Remy, because they created that free doctor's lounge. It was the doctor's lounge. And it was such a game changer. I think, it was, I personally wanted to meet the head doctor that said to turn that, I met the doctor and I thanked the whole entire team because they didn't have to do that. They didn't have to. And it was such a relief. There's no words that can really put the description of saying when I got that nurse that came to Jean and I said, when we're getting discharged and they're like, by the way, one of you guys can stay, let me show you this room, which you probably passed by, I didn't realize this, that this is a free stay room, fully showered, fully bathroom, four separate rooms with a kitchenette, microwave, refrigerator, all of the above, that one of you guys can stay. And the rotation of it is, first in, first out. So if there's another family that comes in, if there's already four families in here, and I was the longest stay, I would be the next one to go. So they had a system that allowed like a newer family to come in, but if one family got discharged within three days, I could stay. So as long as there was an empty room, you could stay as long as you needed to be there. And that I think made more so a difference for me physically and mentally. And Jean said, you want me to, I didn't have to be separated. And I had full access. I could go in there 24 hours, as long as there wasn't a surgery of another baby or something emergency happening. I was in there fully. I could go in for Remy. I was able to rest.

Leah MG Jayanetti (01:04:30.238) Yeah. No, I'm glad you said community because it was a community like no, that was able to formulate conversations and bonds not only with Remy better, but also with other parents and caregivers. And it was only parents. So it was either the mom or dad that were there and really bond with conversations that no one else understood. And people said to me, like friends and families, like, well, didn't you already have the experience with Uri, wasn't he in the NICU, somewhat already like you knew what to expect? I said, I knew what to expect, procedure wise, medically wise. I didn't know what to expect with Remy's case. The emotion of them saying, if she doesn't poop and she doesn't, her levels go down, this is the next step. And every moment I'm just like, does she have to, is she going to, how is she, is she going to be permanent brain damage? Is she going to, do they have to take her to another hospital? I was like, no, no experiences. There's no two experiences that's the same. Absolutely not. And knowing that I have my son at home who's, Uri, every day, is Remy coming home now? Is my little sister coming home now? And I have to be hopeful for him and say, we hope so. Because we didn't know what if she got an infection, we don't, we hope so. She's getting stronger. Keep praying your prayers, Uri, like she's getting stronger. So the parents that were there, and that's another, I did do the Facebook group for Touching Tiny Hands. So that's where the Facebook group did come in for the peer to peer support. And that's where the peer to peer support was also another key aspect we underestimate because every single family's NICU journey is so different and friends and family are great with where they can support and not feel like they're overbearing, but having another family that went through a medical journey was so refreshing. So staying there, talking to some at the same time.

Leah MG Jayanetti (01:06:54.284) Yeah, well, because, right, like you said, no two baby stories are the same. And that's true. Having somebody who's had like, it's really amazing to see somebody else who's like, I had high bilirubin with my baby and this is what, you know, not even that the outcomes can be the same, but just to know that you're not the only person in the world. Then that other side, which is what you're talking about now, which I think is really important is the people who are with you right now under these conditions, under this, you know, at this table, at this meal, or in this chair, in this pumping room, in this lobby, in this, you know, that is your new NICU friend family. You know, like that's, it's the only ones who know what it's like right now in this moment where friends and family from the outside, can do their best, especially like you said in COVID, they could do much less than even now. And for a lot of our families who have babies and they are far away, like you started with Uri, we have, you know, people have to travel a long distance to get care across the country and across the world. So they are sort of separated in that way that COVID separated us, right? It's less like there's a threat outside, but it's more a physical distance. So knowing that there's those opportunities to make those connections. And I just really love that that hospital made a solution, which I would love for you to be like, and they kept it, but I don't think they did because there's almost nobody who does that.

Alena Costume (01:08:19.675) They did, that particular hospital did. So it was, and I went back and visit after, because I wanted the team to know what was birthed from this. Yes, my daughter was born obviously here, but also what was such a different experience. And they still have it. And they have it because of how many families came, not only myself, other families came back and say, thank you for doing this. What can we do to make sure that this stays? Because this was such an important aspect. And when families be vocal and advocate for other families beyond them, the hospital, that hospital listened and they're like, please, you have no idea how important this room is. Whatever we can do to keep it. And they have and I'm grateful.

Leah MG Jayanetti (01:09:21.038) That's incredible. I think it's sort of like what you talked about earlier with your first experience was that, you know, your family included you in the holidays, feeling like you were included was something there, feeling like you belonged in this experience. Like nothing was wrong with you or your life or your child because what you were going through, you still belonged in your family, still belonged with your friends. And in this time, the NICU said, you belong here. You belong here. And we're gonna make it so that you feel like you belong. And that is something that is hard for NICUs to create. And it's hard for us when we don't feel like we belong, because then we feel powerless or we feel frightened because you don't have that security. And that's really profound that I'm hearing that as a thread, as something that helps us get through even more complicated times. Yes, it's a baseline. And something that you're, yeah, yeah, yeah. It's something that I hear you talking about with your organization is belonging. And getting you through those growing pains.

Alena Costume (01:10:47.865) Yeah. And in the belonging aspect of how you just broke it down so, so great, it comes in waves because you're still processing your own thoughts, your emotion, your own looking at those notes saying, okay, another update is going to come in a couple of hours. And now how do I emotionally connect with that? How do I make sure that those who are wanting to help and trying to figure out how to help relay that to them and you're getting asked numerous questions but those are the moments that making you feel like I belong here. This is a hard time. Both those Christmas morning, Christmas day, all through that holiday and COVID, hard times, very, very hard times. And I go back to that growing pain statement because I was like, they were growing strong. I was growing strong. Whatever the strength was at that time, it was painful. It wasn't, but there was a glimpse of joy in every moment. And those glimpse of joys, I remember writing them down in my journal or a piece of paper, sometimes I'm not even sure, whatever, a voice note, whatever to come back to it. Cause you know, it might be a stick of gum. Cause you're like, what is happening? Gum paper. And letting, going back and reading those moments because we do have our quiet moments. We have so many quiet moments. And I remember going back to just looking over a note or listening to a recording. And because I would record some time of what those doctors and nurses are saying, because I'm holding my son or daughter's hand or feet and I don't want to write. And I just want to let them know I'm here listening to their plan as well. And in that voice note, my husband or someone quietly would have just whispered saying, it's going to be OK. Like it was very faint as they're going over, it's going to be OK. You don't have to do this alone. Process it out loud. It was just and I'm like, wait, who said that? Like, and it was a nurse on the side. Or it might've been me whispering it just to myself. Just like, just hearing it all out loud and you're just like, take a deep breath, it's going to be okay.

Leah MG Jayanetti (01:13:38.124) This is incredible, Alina. I mean, I can't thank you enough for sharing so much in even this short, I mean, it's longer than we were planning on chatting, but it's so short. There's so much more to you and to your experiences. And so I hope that we'll be able to sit again sometime soon. I'm wondering, so this is our, we're going into our third year with Beyond the Beeps and like we're about to start it. So we're creating the NICU Knapsack now. Let's see how it goes. So if you had to pack a bag for a NICU family and you had one thing, or maybe I'll allow people to have two, one thing though, you're like, you don't wanna do without. What would you put in that NICU Knapsack? Somebody's like, you gotta go to the NICU. Like your friend said, go to your house and gather your life. But what would be one thing you would want a NICU family to have in that bag?

Alena Costume (01:14:43.611) So many things on my mind is like, for sure. I'm such a big advocate for self care. And as caregivers and parents, the self care, when Remy was born, I realized how much more my self care was so much more important for me to be in my well being mindset. So basic self care items, I would definitely say if I had to say it's the simple of the lotions because our hands are always, we're washing our hands so much and of course, unscented lotions. Something that, the pen and paper to journal. And this is big. This is big. It just came back to me, if you have your phone, cause sometime, again, there's moments in times that I know I left my phone in either bag or, but because of pictures, I did not have any pictures of Uri the first three days. We obviously the day one we did because when he was born, Jean made sure that happened in that short period of time. They were cutting, the nurses took one of our phones and they did that. So we had day of pictures, but then during the journey of the NICU for him with our first born, I don't remember us, we did not take pictures day two, day three and day four, because it was so much information that we did not realize. We didn't, not purposely, we just didn't realize that we did not take any pictures until another nurse or a family member was like, send us some updated pictures. And we're like, oh. So in the knapsack, if you could have, obviously it was great. Photos, so self-care items, which is your self-care, the lotion, the chapstick, essential oil, a journal, something that will help you during, letting you know that you are going to be normal, as normal as possible. The pen and paper, the journal, the photos, so your phone, your charger, something that will help you through that. And take those pictures and I'm gonna go back to nourishment. I remember during Remy's time, I created little baskets that I would put under everyone else's incubator, with whole fruits. So banana, apple and orange, a little basket and I was just like, I was like, Jean, you're gonna go to, cause I didn't leave. I didn't leave during Remy's stay. I stayed the whole, cause of again, COVID and preferably me, if anything, I was able to stay and not with Jean. And so I was like, go to the dollar store and this is what you're gonna buy, 20 baskets and then go to whatever supermarket and bunches. And the nurses was like, yeah. So I left. So what I experienced with that family Christmas day, I transitioned to when Remy stayed, I was just like, we're here and every family was different. So the self care, they're like, at least I know that they always have one kind of nourishment for that day, banana, apple and orange.

Leah MG Jayanetti (01:18:08.994) I love that you chose fresh fruits too, because the NICU is very sterile and it's simpler and easier to provide packaged things, right? But that fresh, living, live, juicy, you know, that is, it really brings you back, it's like touching a tree, you know? Like you're like, I'm alive, you know? So that's really incredible. Well, I love it. We'll put them in the knapsack. They're there now forevermore. I love it. And Alina. So one of the things we close with here is what we, you mentioned hope a couple of times in here. What does hope mean to you?

Alena Costume (01:18:56.751) Reassurance to stay strong in your journey. For me, it was reassurance of my faith. Like every hour is different. Every minute's different. Stay hopeful. The doctors or nurses are, they said it, they're doing exactly what they're trained to do. And us caregivers and parents, hope our baby feels it. Our NICU warriors are strong and mighty. They feel it. They sense it. They sense every emotion. And so it's reassurance of the faith that it's going to be okay. That's hope for me.

Leah MG Jayanetti (01:19:47.342) Well, we have a lot of hope these holidays. And I thank you so much, Alina, for being here. And to everybody out there who's listening, we know that this is an extra different time. Maybe it's not that much harder for you. Maybe it doesn't feel that different. Maybe your people are coming around you. But we also know that it is a little bit harder. It is a little more complex. And there are extra feelings and those are all valid. And Alina and I are here with you. Here we're in your ears today. And so if you're out there, you know, decorating a Christmas tree, lighting a menorah, getting your children, we didn't even get a chance to talk about this, getting your children into their matching holiday, whatever they're supposed to do, all the rigmarole that goes along with the other kids out there. You're running around crazy, getting the house ready for guests. There's a lot going on for parents. And you are not alone in that experience. You are not alone. We are here with you in your ears, hopefully maybe even at your bedside, delivering your meals from Touching Tiny Hands, giving you that peer to peer support. You are not alone. We see you, we hear you, we feel you, and we look forward to sitting with you again next time. Take gentle care. Happy holidays, everybody.

Alena Costume (01:21:15.292) Happy holidays.