Birth Journeys: Lifting the veil on the birth experience
Did your childbirth experience go as planned? Then The Birth Journeys Podcast® is for you! We share powerful and transformative birth stories that illuminate the realities of childbirth. Hosted by a labor nurse and prenatal coach who specializes in transformational coaching techniques, this podcast goes beyond traditional birth narratives to foster healing, build trust, and create transparency between birthing individuals and healthcare providers.
In each episode, we dive into essential topics like birth preparation, debunking common misconceptions, understanding hospital procedures, and promoting autonomy in the birthing process. We also bring you the wisdom and insights of experienced birth workers and medical professionals.
This is a safe and inclusive space where every birth story is valued, honored, and deserves to be heard. Join us in exploring the diverse and unique experiences of birth givers, and discover how transformational coaching can empower your own birth journey.
Contact Kelly Hof at: birthjourneysRN@gmail.com
Birth Journeys: Lifting the veil on the birth experience
Ashley Martin: From Birth Complications to Creating the NICU Notebook
How does a mother endure the stress of a high-risk pregnancy and the NICU during the early days of the pandemic? Join us as Ashley Martin from Southern Missouri bravely shares her incredible journey, from the initial excitement of a planned pregnancy to the harrowing moments of dealing with complications like a subchorionic hemorrhage and a diagnosis of PPROM and incompetent cervix. Ashley’s candid storytelling sheds light on the overwhelming emotions of facing her daughter’s premature birth at just 24 weeks and four days, and how she transitioned her experience into creating the NICU Notebook to support other families.
The postpartum experience can be particularly challenging when your baby is in the NICU. Ashley opens up about the pain of being in a postpartum ward without her newborn, the isolation of pumping breast milk without her baby nearby, and coping with the stress of hearing other newborns crying when she couldn't comfort her own. We discuss the emotional toll and the unique challenges of postpartum discharge when your baby remains in the NICU, highlighting the need for hospitals to adopt more sensitive, NICU-informed postpartum care practices. Ashley's heartfelt reflections offer a raw and powerful narrative of resilience.
Navigating the NICU's medical complexities and celebrating unique milestones amidst the pandemic presents its own set of challenges. In this episode, we explore car seat safety for premature babies, the logistical and emotional hurdles of NICU life, and the importance of being informed about NICU resources. Ashley shares her tips and advice for other parents in similar situations, making this episode not just a story of struggle, but one of hope, practical wisdom, and unwavering strength. Whether you are a new parent, have experience with the NICU, or simply want to hear an inspiring story, Ashley's journey offers valuable insights and heartfelt moments that resonate deeply.
Connect with Ashley on instagram: https://www.instagram.com/thenicunotebookco/
Check out The NICU Notebook here: https://thenicunotebook.com/welcome
Join the Bump & Beyond Online Community for moms & moms-to-be!
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Kelly Hof: Labor Nurse + Birth Coach
Basically, I'm your birth bestie! With me as your coach, you will tell fear to take a hike!
Connect with Kelly Hof at kellyhof.com
Medical Disclaimer:
This podcast is intended as a safe space for women to share their birth experiences. It is not intended to provide medical advice. Each woman’s medical course of action is individual and may not appropriately transfer to another similar situation. Please speak to your medical provider before making any medical decisions. Additionally, it is important to keep in mind that evidence based practice evolves as our knowledge of science improves. To the best of my ability I will attempt to present the most current ACOG and AWHONN recommendations at the time the podcast is recorded, but that may not necessarily reflect the best practices at the time the podcast is heard. Additionally, guests sharing their stories have the right to autonomy in their medical decisions, and may share their choice to go against current practice recommendations. I intend to hold space for people to share their decisions. I will attempt to share the current recommendations so that my audience is informed, but it is up to each individual to choose what is best for them.
Hello, Today I have with me Ashley Martin. Ashley is a mother of one from Southern Missouri. She gave birth to her daughter in 2020 at 24 weeks and 4 days after being diagnosed with PPROM and incompetent cervix. At 23 weeks, Her daughter spent 104 days in the NICU. From her experience, she created the NICU Notebook to help families process, track and remember their experiences in the NICU. Ashley welcome and thank you so much for joining me.
Speaker 2:Hi, thank you so much for having me. I'm excited to be here.
Speaker 1:I am excited to hear the full story. I've heard little snippets, but I want to hear your full experience and I think your experience will really help other moms that are either going through the experience or may know that they're going through something similar in the future.
Speaker 2:It's a roller coaster, so I'll take you along the ride with me. I got pregnant in March of 2020. Super excited it was a planned pregnancy. Everything was going great. Six weeks rolls around, I started bleeding, so we didn't really know what to do. First pregnancy, of course, what do you do when you're pregnant and you're bleeding and you don't know what you're doing? Headed to the emergency room and, of course, the big March of 2020, covid lockdowns were beginning. So I will never forget having to do this on my own. My husband we weren't married then, but we are now we got to the emergency room.
Speaker 2:I walked through these sliding doors alone. To my right is the emergency room. Straight in front of me is this heavily pregnant woman so excited, husband carrying a car seat, heading to labor and delivery. And I'm going to find out if I'm still pregnant. That was a little bit more of a punch in the gut than I could handle, so I broke down. Nurse came to me, asked what's going on, told her, got checked in. We found out it was a subchorionic hemorrhage. I would try to explain it to you, but I'm not exactly sure how to do it. Well, so, still pregnant, said that the bleeding should ease up over the next few days and to contact my OB.
Speaker 2:By the time I had my first appointment with my OB in their office and had an ultrasound. This was at 11 weeks. The hemorrhage had healed. There was no sign of bleeding. We planned for a smooth ride from there. Everything was looking good, made it through our anatomy scan, found out we were having a baby girl, started thinking of names, just the whole thing that you dream of.
Speaker 2:Then 23 weeks rolls around and I wake up that morning and I'll be honest with you, I had really bad morning sickness to the point of I would throw up and I would have to go change clothes because my bladder would let it go. So I thought my bladder is not holding on well. Throughout the day. It just happened here and there. Pregnancy, who knows what's going on. Didn't think anything of it because of the urine issue. That evening I had fallen asleep on the couch watching TV, as one does. I woke up and it was still happening. You know what? I'm just going to call and make sure, called my OB's after hour number and the nurse was like well, you need to come to labor and delivery. We need to make sure this isn't your water. I'm like, oh, I'm only 23 weeks, okay, so we pack up and head to the hospital we plan to deliver at, which is two and a half hours away, and I did not take a phone charger, I did not take a change of clothes, I did not take anything. I was in no way prepared for what was about to happen. I thought they were going to say, oh, first time mom, so nervous and laugh and say this is normal and send us home.
Speaker 2:The doctor did a cervical check and collected the fluid and came back to the room a little bit later and said I'm sure it was positive and you are two centimeters dilated. Pprom, which is preterm premature rupture of membranes, and incompetent cervix, which means my cervix was dilating too soon, was the official diagnosis. They did an ultrasound to check the amount of fluid and check on baby girl, and she looked good. She didn't have a care. She was still rolling around doing her thing, licking her hand. It was so terrifying. Our world just stopped when she came in and said that. It just stopped. I felt sick, he felt sick, we're just. What do we do? So, of course, I was immediately admitted to labor and delivery. I was put in a position where my butt was higher than my top half, and given antibiotics to try and ward off any infection that may have began, since my water had been broken, and steroids for baby girl's lungs, since they would be so underdeveloped. And we started talking statistics and chances of survival, possible outcomes, including disabilities, that she could have. It didn't feel real. We stayed in labor and delivery for I want to say I think it was 48 hours, and when they realized she's not going into labor right now, they moved me to PCU and my OB came in. You know what? We're aiming for 11 more weeks.
Speaker 2:The plan was for me to stay in the hospital for 11 weeks and when I realized I'm not going home pregnant, it was heartbreaking. I had, just a week or two before, started to feel her move and I didn't know if that was fixing to come to an end or what was going to happen. So I got to hang out in the hospital by myself because in TCU, with COVID lockdowns, visiting hours were two hours a day, one person one time a day. So my husband would come in, we'd spend time together and then he would have to leave, and the rest of the time I was isolated, except for when the nurses would come in to check vitals, listen to me cry and try to be as reassuring as possible. They were amazing. I love those ladies so much.
Speaker 2:Then 10 days passed and the morning I turned 24 weeks and four days I started having contractions. They were very infrequent, they weren't showing up too strong on the monitor, but they did. Let me know about 5 am hey, you're starting to show contractions. We are keeping an eye on you. 8 am I was in labor, so I was moved back to labor and delivery. 13 hours later she was born.
Speaker 2:The birthing process, though with a baby that small, it was weird. I stalled at six centimeters for a long time and the NICU team's outside waiting ready for the word and my OB who was supposed to be delivering her had to leave. So I had this doctor I didn't know coming in. I couldn't have even told you anything about her after the fact because I was so caught up in what was happening with our daughter. They wanted to take me for a C-section, though, and my OB is like no, they look fine on the monitor. She wanted a vaginal delivery. We're going to try and give her that because nothing else is going the way it should be. They said, okay, she has until 10 pm and if she's not born by 10 pm we're going for a C-section. My daughter was born at 9.41 pm, so she really ran the show. You would think that the story would end there when you're telling about your birth, but that was just the beginning for us.
Speaker 2:They took her from me straight over to the side and started working on her working on getting her intubated because she was in respiratory distress. They were working on me because apparently I had a little bit more bleeding than they would have liked. So with me hollering, is she okay, is she okay? And I'm not responding, and my nurse coming over and giving me a shot in the thigh and the OB pulling whatever it was she was doing out, there was so much chaos it was so hard to just not sit there and just say over and over again is she okay, is she okay? And the next thing I know she's gone.
Speaker 2:All these people that had flooded in had cleared the room and it was two hours before we were able to go to the NICU. So there was this limbo where we didn't know what was going on. We're just waiting for the call on. Can we come see her, Is she? She wasn't OK, but waiting for a call. So finally, after about two hours, we got to go down to the NICU and see our baby girl, who was one pound 13 ounces and 13 and a half inches long, and that is something you don't expect. You can hear the weight and everything and you can try to imagine it, but when you see a baby that's barely bigger than your hand, I hate to keep saying it doesn't seem real, but it just doesn't.
Speaker 1:Let's back up a little bit. Did they tell you anything when they took her to the NICU? No, no, okay.
Speaker 2:I knew she was alive because when they lifted her up she looked pissed at the world and had her little fist in the air.
Speaker 1:That's a good sign, and this all happened during COVID. So I would imagine that played into some of the restrictions, because often they will either let the partner go up earlier or, if the baby is stabilized, the partner can come up for a few minutes to see where the baby is going and then they get the baby settled. But I would imagine that COVID played into that.
Speaker 2:That and with her being the size she was and everything they were, I know they had to work on her, get her intubated, get those lines in. I know they I think they had issues getting her lines in her umbilical that small.
Speaker 1:that's really hard. And then you said that you hemorrhaged and that they had to take something out of you. Did they ever say that it was like pieces of the placenta?
Speaker 2:I don't know and I don't know if they actually called it a hemorrhage. I just know the bleeding was a little heavier than they would have liked and I think they gave me a shot. I think it was to prevent it from getting that far. I couldn't find anything in my medical records other than the name of the medicine. Was it methogen? I honestly don't remember. I just know she said move your hand and give me a shot in the thigh. And I didn't even. I didn't even think about it until later on. And what was that?
Speaker 1:Unless, like it wasn't a natural, like you had an IV and everything right, cause that Pitocin.
Speaker 2:Yeah, I had an epidural.
Speaker 1:Okay, and Pitocin, yeah yeah. So Pitocin we can give through the thigh if you don't have it already going through your IV. But probably, if they said that you're bleeding a little bit more than they wanted, they probably give you a shot of methogen that helps your uterus get smaller so that it closes down on those blood vessels where the placenta was. Either they're putting a little bit of traction on the placenta to help the placenta come out, sometimes they'll do like a manual sweep of the uterus, so they'll put their hand inside and try to get any pieces of the placenta that may have adhered to the uterine lining or just aren't coming out.
Speaker 2:So they didn't have anything like that in the medical record. It was a straightforward, and the placenta was sent off to pathology and Okay, who knows. I don't know I just know she was going to work doing something and yeah, trying to get all the things out, yeah. I wasn't worried about that end when she was yeah, you're like I don't care.
Speaker 1:Cambridge, what's that? What?
Speaker 2:you gonna do?
Speaker 1:what's going on with my baby? So then you had a two-hour recovery and labor and delivery, and then they allowed you to go to the NICU to see your baby. Did you go on the way to postpartum? Yes, they took us down to the NICU to see your baby. Did you go on the way?
Speaker 2:to postpartum. Yes, they took us down to the NICU first and then took us up to postpartum, which I can tell you. That's where some real hard memories that I can tell you about Was it in postpartum?
Speaker 1:Yeah, all right, let's fast forward to that, and then we'll talk about your NICU experience.
Speaker 2:One of the hardest things about being in postpartum was when you have your baby downstairs in the NICU and you've just given birth, you're still on the same floor with everyone who has their babies with them. So next door there is a family with their baby who is crying. And then there's me and my husband in our room no baby. But that baby would cry and I would just lose it because it was so unnatural, because there was no bassinet, there was no baby, my milk wasn't coming in. I was just fumbling with a breast pump falling as this baby next door would cry Every little bit. It just kept happening. And then there was.
Speaker 2:This older woman came in to take my vitals and I think I scared her. She came in and was putting the blood pressure cuff on and the pulse ox and she looked up at the board and said oh, a baby girl. How much did she weigh? And I said one pound 13 ounces and she got silent. She took my blood pressure pulse ox off, she took my temperature, she rolled up the blood pressure cuff and put it on the cart and said really low, is she okay? I don't know. And she left and I never saw her again. It's like she came in but she didn't catch on that there wasn't a bassinet or a baby in the room and it didn't hit me until later on how strange of an interaction that was. It did not strike me in the moment of that was awkward. After we came home I was thinking back about the experience and it's like how did she not notice that?
Speaker 1:Sometimes they go to the nursery though, so she may not have known. That sounds like one of the texts, because they come in to take your vitals and don't always get that information, but that is something of note. So sometimes we'll put like little notifications on the door saying what's going on.
Speaker 2:NICU family would be a good notification. Yeah, loss and NICU would be a really good. Yeah, we usually do loss. Let's put a green sticker up.
Speaker 1:Yeah, they stay on labor and delivery usually because there's no reason I don't know about every hospital, but there's no reason to send a loss family up to postpartum. Nicu families are a little bit in between, because most of the time the hope is that the baby will reunite with the family. But yeah, I mean it is. I wish there was a better way, a bridge where it's maybe the family stays in the NICU Between the. Yeah, that's so hard because essentially you're going to stay there for a couple days and then you would be able to go be with your baby after that. So I don't know that. Hospitals, everything's about money, right. So probably the infrastructure to be able to develop a whole combined unit for NICU families and then the staff.
Speaker 2:I didn't see it. There is a hospital I can't remember which one it is they're starting to put a postpartum room connected to a small NICU room. Wow, I saw that on Instagram and we shared it. I was like that is incredible. That is incredible. I don't know, because once you're discharged, I don't know how you would get to stay. You can't just live for 104 days in the. Probably they would just Move rooms.
Speaker 1:Yeah, yeah, I don't know. No-transcript. Did they have that option, if necessary?
Speaker 2:There was a little hard fold out couch thing that we were allowed to stay on, and at the one in the second NICU we were at the first one you weren't allowed to sleep there.
Speaker 1:Wow, yeah. Yeah, the room in is specifically for if you have a child that has a lot of medical needs, then they would learn all of the things that needed to be done at home to care for them. So it's essentially they're able to be discharged, but with a lot of support. Yeah, but it's support that can be done at home and it probably is going to be done for the long term. So the parents would need to learn how to do that. But, yeah, there should be some sort of in-between. It is so unnatural to be separated from your baby, especially when you're recovering. I think part of recovery is that bonding with your baby. I mean, the hormones that are released by having your baby close are part of the healing process. So to have your baby so far away is just so difficult.
Speaker 2:It's hard because you go through the trauma of such an extremely premature birth and then you go through the trauma of everything you miss out on, not just like the golden hour and that first skin to skin right after birth. There's the missed maternity photos and the first photos and the newborn photos. It's just all of it. There's so many things that you just miss out on. And then you're on postpartum and again you're missing out on those first moments and also like I'm thinking about in labor and delivery.
Speaker 1:when someone delivers, those first two hours were just making sure that you're medically safe. It's not always set up for your emotional well-being anything wrong.
Speaker 2:We had an amazing staff, but I don't think that that wasn't the priority in the moment.
Speaker 1:It was making sure you make it through this, yeah, and just as a labor and delivery nurse, I can say the protocols are not conducive to emotional well-being of the patient. The protocols are every 15 minutes the nurse needs to check your uterus and make sure you're not bleeding. And make sure that're not bleeding and make sure that you're getting your medication.
Speaker 2:I didn't like you for that. Those funnel massages are awful. I had a bruise the size of a grapefruit. Oh, now, that shouldn't be that. I can send you a picture. That shouldn't be that aggressive it was rough.
Speaker 1:But also, if you were bleeding then that may have been necessary, but they're usually not that aggressive. Yes, I will. I tell them. I'm sorry, I have to be mean to you so that it's with love. Yes, and when I so, I've worked labor and delivery, postpartum, special care, nursery, maternal fetal medicine, I've worked in all those areas. I can tell you that once I'm on postpartum I'm not as mean.
Speaker 1:It's necessary in the first two hours. After that we just make sure that you're not bleeding and we check that your uterus is where we want it to be. We're not like and again, and this is just an education moment, right, people get confused between fundal checks, fundal massage and then postpartum fundal checks. The first hour or two hours we do push a little harder, but fundal massage is when you're like in there digging for a while. Oh yeah, because you're bleeding and because your uterus is not firm. So we do a bit of vigorous pressing every 15 minutes in labor and delivery to make sure that we've gotten all of the clots and everything out in that first two hours, but it's nothing more than like. I will dig deep and push down and then try to push the clots out and if everything feels fine and your lower uterine segment feels firm and the top part of your uterus and your fundus feels firm and you're not bleeding crazy.
Speaker 2:I'll hands off Now if we find something concerning they were still kind of massaging mine in postpartum. Oh they were, it wasn't as rough, but they were still rubbing it some in postpartum. It wasn't as aggressive.
Speaker 1:Sometimes, if you can't, find it if it's super low too, or it depends on if your uterus is anterior or tilted Posterior, Posterior, that kind of stuff. Sometimes they're harder to find.
Speaker 2:Yeah, well, maybe it was just plain hide and seek.
Speaker 1:It might've been yeah, and also they might have said that she hemorrhaged a little bit, be a little more aggressive, which that's not fun. I remember them. Yes, I had two kids and they weren't fun. They're not at all, but necessary, and hopefully people aren't being overly aggressive.
Speaker 2:That is my hope, I know probably out there, there are people that are being yeah.
Speaker 1:So then, what else about your postpartum experience was challenging for you.
Speaker 2:Being discharged without a baby, 100% Walking out of that hospital and not having a baby, no car seat and having to watch the discharge videos that you would watch before taking home a full-term infant, the discharge videos that you would watch before taking home a full-turned infant, the shaken baby syndrome, doll in video, the car seat video, the infant CPR having to watch those no baby in the room, no car seat, nothing before being discharged to go down an entire floor and go through the NICU doors, scrub in for two minutes to go see my less than two pound baby. That was a bitch.
Speaker 1:That's unfortunate. When you're that, I get why it's a requirement, but I feel like we could push back that requirement if your baby's not going home with you.
Speaker 2:Like that. We had to watch it in the NICU too. I get that.
Speaker 1:Like why are we doing it twice? Salt in a wound, yeah. And like the shaken baby one. So inappropriate if you have a baby in the NICU, like you've got trauma and now we're talking about traumatizing a baby Probably too soon. Can we not Because we have to go through all these little modules.
Speaker 2:That's awful, but again, I think it was just part of protocol and they weren't thinking of the situation and taking into account what was going on. It was just like OK time for the videos, ok time to send her home? Yeah, just charge paperwork.
Speaker 1:And I don't think the nurses have all watched the videos necessarily. I know that I haven't seen the videos at some of the hospitals I've worked at. I remember when I first started, when I first became a nurse in orientation, we had to watch the videos. But if you've been working in a hospital for 20 years, that was a long time ago. We don't remember what's in the videos. So that is definitely something for hospitals to think about. Did you give them any feedback on that?
Speaker 2:Honestly, it's another one of those things that just it sucked in the moment and we went through it and later on it's like why would you do that to us? It wasn't even something I considered I'd love to tell them now, because something I'm really passionate about now is more NICU, informed prenatal care and consideration on postpartum, and so I'd love to get them feedback on that now, but it wasn't something in the moment that I was even cared about. It was. It's over, it's done. Let's get downstairs.
Speaker 1:Yeah, I bet you, if you called that hospital and asked to talk to the clinical director of postpartum and just said I had a wonderful experience at your hospital. I just wanted to give you a little bit of feedback about what would have made it better for us, cause it's just part of the system, right? It wasn't any one person that did anything. You're not saying you guys suck. You're just saying let's talk about how you might be able to make this better for NICU families. Let's consider this Sensitive care.
Speaker 1:Yeah, because, honestly, they're always looking for feedback because the way that the reviews go at the hospital, you have to achieve a certain percentage of. I would definitely recommend this hospital. It's like a national thing. I think it's like the H-caps or something like that. Most nurses find it highly annoying, but it is what it is and you have to get like a certain percentage of absolutely would recommend. And if they're not getting that from NICU families, they probably would love to know why, because that's a small thing that they could improve to make their NICU family's lives a lot easier.
Speaker 2:Those things stick out to me. And we're almost four years out, yeah, from her being born. The end of August will be four years from this happening and it still sits in my mind very fresh.
Speaker 1:So it would be worth, and I'm just imagining we have a folder with a checklist on it and it has the patient gone through all of these things in order to qualify for discharge. All they would have to do is put not required for NICU families. That's it. It would be that simple of a change. But if nobody's brought it up to them then they wouldn't know yeah.
Speaker 1:It just isn't something they consider, because they're thinking about safety. They're thinking about the majority of the patients how to make sure that nobody falls through the cracks of the information that they need. But you're not going to fall through the cracks if you're in the NICU, because the NICU is going to give you that information.
Speaker 2:So let's not bombard people. You still get the information, it's just delayed.
Speaker 1:It's given when necessary, because are you really? Yeah, you probably remembered it because it was traumatizing, but is that what we're going for? And then, the next time you saw the video, did that bring back those feelings?
Speaker 2:Oh, I've already seen this, thank you.
Speaker 1:Yes, and also it wasn't pleasant the first time, and thanks for the reminder.
Speaker 2:But again, it's one of those things I would never hold against them, because their care was above and beyond.
Speaker 1:Yeah, and I think it would be completely honestly. I think that they would appreciate it if you let them know, especially all of those things that you're saying like wonderful care, all of that. The only thing that was a challenge for me were these moments like letting people know that I have a child in the NICU. To not come in and say how much your baby weighs, like the common questions that most people want to share. Let's not do that with NICU baby. Just a little tweak in education. And then let's not make it required to watch the scary videos before we leave postpartum because we're already scared.
Speaker 2:You know what? I don't have a car seat with me. I haven't even bought one yet. I'm only barely halfway through my pregnancy.
Speaker 1:Your child doesn't fit in a car seat, yet she doesn't quite fit that four pounder yet Exactly. Let's give her some time. So you said your child moved NICUs. So did she. It was. She didn't stay in the NICU from the hospital, you were discharged from right.
Speaker 2:No, I was discharged two days after she was born and when I was in PCU, my husband we were trying to keep the room less cluttered so it didn't feel overwhelming and he took some of my stuff that I was not planning on needing for a while oh, I don't know my shoes. Two days before she was born he had to run home and grab some stuff and we left two and a half hours from the hospital and he got the call because my daughter's heart rate fell off the monitor. They couldn't find her, so they're putting oxygen on me pulling my bed away. They were going for an emergency C-section right now, calling him he heads back to the hospital. They got her back, she was going strong and so he was back and stayed with me and then, when I was discharged, we realized, oh, I don't have shoes. Was there a Walmart close by? We ran in Target and picked me out a very cute pair of flip-flops that I still have. He went in and got them, did a great job, right size and everything.
Speaker 1:And.
Speaker 2:I went in to pick out a breast pump because you're supposed to be able to get that through insurance. I couldn't wait because we were being discharged. I needed my milk, never came in, but I was trying and I broke down in the target aisle sobbing and this woman comes running over to me and throws her arm around me and I'm like trying not to let snot run down my face out of my mask because you're the mask requirements and she's what's going on and I blubbered out daughter's in the NICU. I need a breast pump. She's hang on. She went, grabbed her daughter who had a preemie wow and she came over and helped me pick out a breast pump and I got that and went back out and we got checked into Ronald McDonald House. We were at the first hospital where I delivered for nine days, but my daughter was diagnosed with a large PDA and I know you would be familiar with that. You could probably explain it a little better than me. Then the ductus arteriosus, because I'm not good at explaining it.
Speaker 1:So the ductus arteriosus and I'm not a cardiologist and it's been a while, but I remember correctly ductus arteriosus is the blood vessel that connects the aorta to the pulmonary vessel from the heart, and in premature babies it doesn't necessarily close because it's not time and they haven't had the time to develop. Sometimes, even in full term, it stays open, and then you have to give them I think it's indomethacin or some sort of NSAID to close it, and if that doesn't work, then they need a surgery. So then I'm assuming she needed a little more help.
Speaker 2:We tried the ibuprofen, we tried Tylenol, we discussed indomethacin, but they weren't confident that it was going to work with the tooth failed and hated to keep prolonging it because she had blood in her ET tube. So they're like let's just plan to get this taken care of. So we were transferred to St Louis and it wasn't like coming up like a lot when they would do the swipe I don't know what you call it, I can't think of a word when they would clean the tube or pull it Suctioning.
Speaker 2:There would be a suctioning, yes, there would be a little bit of tint, like this isn't the best Move things along. So we were transferred to a level four NICU. We were at a level three. They transferred us to a level four. 10 days old, I got to hold her for the first time. Wow, and it's so weird, cause at one point you're like I can't hold a baby that weighs less than two pounds. She's intubated, she's got cubes and wires everywhere.
Speaker 1:And then at the same time you're like, give her to me, give me my baby, give me my baby.
Speaker 2:But I got to hold her and my mind then wasn't thinking like you have to do this in case the surgery doesn't work.
Speaker 1:It was oh, that's my baby.
Speaker 2:It's this little moment and you finally get that skin to skin and she's so light. There's no, you feel the wires and stuff laying on you, but she's so little, she just sits right between your boobs and it's just. It's crazy. Her head was so tiny but then the next day they went in and her shoulder on her back by her shoulder blade, put the clamp on and she had a little tube for a few days and it worked.
Speaker 1:Good.
Speaker 2:After that it's almost like an imposter syndrome because you would think, having a baby born that early, we just kept waiting for the next shoe to drop. What's going to happen next? I had a subchorionic hemorrhage. My water broke at 23 weeks. I delivered at 24 and four. She had a large PDA what are you going to throw at us next? And it was fairly smooth. She had apneas and brady's and of course they were watching for neck and she had to learn to eat, breathe, swallow, suck and all the things that babies are supposed to do. But we weren't tripping over these massive events like neck coming up or anything like that. She was on donor milk until we were able to start fortifying and then we went from the fortified breast milk since mine never came in to formula high protein, high calorie formula and then just high calorie formula. And then she came home on 24-cal Neosher.
Speaker 1:And then you guys did you stay at Ronald McDonald House for that whole time?
Speaker 2:Well, thank you, covid. Ronald McDonald House is full so we were transferred to St Louis. I knew nothing of St Louis other than hey, the merch, and there's two great hospitals with NICUs and I didn't know about the NICUs but I knew there were two great children's hospitals. We're transferred up there. The night we get there it's after midnight. She's tucked in her little isolate. It's late. Those lovely couches that pull out the little hard. They just fold down their plastic and one person can barely fit on their comfort.
Speaker 2:My husband and I slept on it that night and I sat there and booked a hotel room for a week. We were going to be the only, but we were trying to get into Ronald McDonald house. We didn't know what we were going to do up there, so I learned where not to go to a hotel in St Louis Scary place. Luckily, thanks to through an insurance program, they partnered with someone else. Since Ronald McDonald house was at capacity for COVID, they put us in an extended stay hotel. So for the 90 some odd days that we were in St Louis which my husband realized the other day that we were up there for a quarter of a year in the NICU we stayed there. We would go. I'd spend 12 hours sitting in the NICU, then go back to the hotel, sleep for a few hours and then rinse and repeat, do it again. But if you need to know what hotel not to stay at, I'm a good girl, just message.
Speaker 1:Ashley Message from St Louis you may want to stay away from.
Speaker 2:But I can tell you where to go, also because the hotel we stayed at. It wasn't fancy or anything, but the people were amazing, the rooms were clean.
Speaker 1:So how does one maintain income while living someplace far away? I mean, I suppose working virtually with COVID might have played into this a little bit.
Speaker 2:We were able to just arrange things to where we were able to stay up there, because that's not always the case, or at least it wasn't for COVID. We were very lucky that we were able to make arrangements.
Speaker 1:One less thing to stress about amidst all the other stress. So you got housing taken care of. You got employment taken care of. You got your shoes. You got a breast pump. You got the surgery taken care of, smooth sailing from there. What does that look like? Because I would imagine that it's still very far from normal.
Speaker 2:Very, which, again, first baby, I had what I thought was supposed to be normal and this, this was not it. Our Bradys some of them did require STEM A lot of them. She was able to self-recover. As she got older she was able to self-recover more. Watching for complications was a big part of it and it was a lot of wait and see. We had a lot of first milestones.
Speaker 2:First outfit it's not what you picture your first outfit.
Speaker 2:You expect it to be in the hospital with your little birth announcement sign and posting it on social media, and you don't expect a preemie onesie that's like barely bigger than a water bottle and in a having to shimmy it up from the bottom and get it over because she's got breathing stuff on her head. It's very different, but to us it was just how things were done, because we had nothing to compare it to. So it was unnatural, but at the same time didn't feel out of the norm, because we didn't know what normal was Right, which is an advantage and disadvantage, because I knew there were things that we were missing out on, but at the same time I hadn't experienced them, so I didn't know what that loss felt like. Having had it, I looked forward to getting to feel her move and kick and have those big painful feet in my ribs, but I don't know how it actually felt. I can't be like, oh, I didn't get it with her, but I got it with this one because we're one and done, so that's.
Speaker 1:Anything else from your NICU stay that stuck out that you feel like families should know about?
Speaker 2:The car seat test is going to be your nemesis. Yeah, I could go on about the car seat test. It's so aggravating. We had to do a two-hour car seat test because we live very far away. We would have to stop every two hours and get out, if not more frequent. We made it down the last couple minutes and she braided. That's so annoying. The next day we had to do it again. But what's so aggravating is the car seat was just sat on a mat in the floor. It was not in a base, it was not installed in a seat, it was not at a proper recline. I like car seat safety. Yeah, thank you. I'm big like car seat safety. Yeah, thank you. I'm big on car seat safety, so like all of these things playing into it.
Speaker 1:it's not fair. It shouldn't count against her. Yes, that drives me crazy.
Speaker 2:Get a fake seat, go get a sample seat. I know they have them. I know they have them because, jamie Grayson, if you don't follow him on Instagram, you should. He's a CPSD. He's got the car seat, the seat that you can install on for demos, and you can get one of those. I know you can. Well, and they didn't let you bring your own seat. We had our own seat, not the base. We had the base. They just said, nope, just bring the seat in and we'll put her in.
Speaker 1:No, so a little bit about that. Nurses are not CPSDs. So a little bit about that. Nurses are not CPSTs. So if you want, for car seat safety, which I'm obsessed with, I still have a five-year-old in a car seat. My daughter was still rear-facing when she was five. I did flip my son around Going on fours. I still have big feelings about him being turned forward, but he begged and three out of four family members agreed not me that he needed to be flipped around. Also, car sickness played into it a little bit. Oh no, yeah, both kids. It was fun.
Speaker 1:I have stories, cpsts and then I've worked at hospitals where and mostly the hospitals where they're not children's hospitals are the ones where they don't have CPSTs or nurses that are trained to be CPSTs, and so when you're in the NICU, when you're in postpartum, the majority of the hospitals do not want the liability of the staff teaching the families how to properly use a car seat, which really creates a challenge when you're doing a car seat test, because if the nurse doesn't know how to properly put the child in the car seat which I see all the time it's too loose, they're not, they're not do it right, super frustrating. So hospitals maybe invest a little bit more in car seat safety. I know one of the hospitals that I work at has a car seat test structure. It's like a rolly cart or you can put the car seat in and it is at a proper incline. So that's an improvement. I just don't know if it's CPST tested or what the all the stuff you may watch those videos in postpartum.
Speaker 2:you can get a CPS there, you can do it.
Speaker 1:You have lactation consultants, you can get a CPST. The problem is it's like a carryover, so like where the CPST can't do the tests that the nurse does. So then how do you do it? And then you can't. Then are they going to train all the nurses to be CPSTs? Like where? How do they?
Speaker 1:there's a little bit of administrative challenge that, but still it's important friends, so let's get it together. The person that you follow what is the name again for car seats? Jamie Grayson. Jamie Grayson, Okay, I will also say if you're on Facebook and not necessarily Instagram, or you're on both and you want to plug into both, Car Seats for the Littles is a I'm obsessed with them great resource for finding the car seat that works best for you and your family and also helping make sure that you have a proper fit and you are safely using your car seat. And finding CPSTs in your area to make sure that somebody can physically look. Now, car seats for the littles will do a visual like if you take proper photos, the CPSTs will look and make sure that you have a proper fit, proper installation and that you're, all your straps and everything are at the proper place. But nothing beats having an actual cpst look at your car so we got a new seat.
Speaker 2:We had our convertible seat, then we got a different one that I went back to the other one because I liked it better but, I wasn't as comfortable with this one, so we found the local cpst and had it checked out. Something I do want to mention since we're on the topic not all police departments and fire stations have a cpst on staff, so please ask for a certified person.
Speaker 2:Yeah, yeah, because anyone can say, oh yeah, I'll take a look and have well intentions but might not know what to look for exactly, and also the one, even like the, that when they have the weekend clinics they don't always know what they're talking about.
Speaker 1:I've wholeheartedly disagreed with the way that the car seat was installed and then they're like, I don't know, look at the manual. I'm like, well, thanks, thanks for that. Yeah, okay, I will. And so then I had car seats for the littles look at it and they fixed it for me. They were able to answer my questions because they know they have the manuals for all the different car seats and you can also it is, I think, graco has. All the brands have their own hotline and they're very helpful.
Speaker 1:Use your resources. It seems like a pain in the butt, but it really is, especially when they're tiny really is super important. To make sure I did not watch her fight for her life, to not strap her in. Good, yes, we're not going to make the car. The reason that my baby didn't make it and it's not even that it's also that most people don't understand and this is part of my obsession until the child is six, their cervical spine is not fully developed. If you do have an accident, even at not the highest speed, just depending on the impact, you could have severe cervical spine injuries if the child isn't correctly strapped in depending on their age and their cervical spine development. So it's important.
Speaker 2:So now that we've gone off on the longest tangent, I don't know how interested people are going to be in our car seat tangent.
Speaker 1:You know what? I don't care, because they're not our friends.
Speaker 2:Did we just become best friends?
Speaker 1:I think we did. I think now we're besties. Whenever I find somebody that's passionate about car seats, I'm like oh my gosh, sit down with me. So the car seat test in the NICU. How many times did that happen before?
Speaker 2:your Twice. Just twice we did it and then the next day we did it again and she did it. It worked out. Some people, if it's not successful too many times, they do a car bed. Our big thing was the five-day countdown on the Brady's. That really hung us.
Speaker 1:Yeah, it's a process, it's a process to make sure that your child doesn't need to be monitored 24-7. It's a process. It's a process to make sure that your child doesn't need to be monitored 24-7. And also so anxiety provoking for families to take home a child that has just passed those tests.
Speaker 2:After our Brady count reset a couple of times and they decided you know what? We're just going to take her off for a few days and give her a break. We started the countdown again. Five days she made it. I'm like I'm not going home without a monitor. So push and push. About 10 days later we were back in the NICU because she hadn't had any episode.
Speaker 1:Like.
Speaker 2:I told you.
Speaker 1:Yeah.
Speaker 2:But we had gone home five days before her due date, so we escaped and then we were back and that was only a couple of nights. She was good Eventually got off the monitor. She only had it for another two weeks and that was it on that she came home? No feeding support, no respiratory support, but push for the monitor Right. If you need it, you would think you'd be ready to escape the monitors, but at the same time it's like nope and a hospital grade monitor.
Speaker 1:They didn't give you the ones that you can buy online.
Speaker 2:I bought one of those too, and checked it next to it, because she had one on one foot and one on the other.
Speaker 1:But just to see how did it?
Speaker 2:pair Pretty good. I won't name which one because I don't want to be responsible for that, but they were pretty close. I didn't keep them both on her at the same time all the time, but I was just curious. Love-hate relationship Very long four and a half an hour car ride home with the machine that's going every time you hit a pothole on the way home from St Louis, did you feel like there were a lot of false alarms at home?
Speaker 2:No, and the one she had. I was watching the monitor at the time because I was walking over to pick her up and it had started dipping and I waited to see if it was just going to come back up because she was asleep. So I knew it was going to up and down and it kept going down. You know what? I went to pick her up and she was like not interested in me, like not wake up. I'm like okay, we gotta go somewhere. So we called an ambulance, rode to the helipad, took the helicopter to the hospital, that hospital ambulance back to the NICU and wow, what did they say about that? Not much. They did viral panels and stuff. It all came back clean. She wasn't sick. It just was a freak moment which I don't want to scare anyone. Maybe I should have said that no, I mean, I think yes, and it can happen. It's like talking about your water breaking at 23 weeks. It's one of those things you don't want to think about, but it happened.
Speaker 1:It happened to my son. He was full term. I just watched him start passing out and turn purple and I was like oh geez, she didn't turn colors yeah.
Speaker 1:I was like hanging over her as it was happening. I'm like that's fixing a beep, I'm just gonna yeah, and it was one of it was, I don't know why. I was singing to him. He was sitting in his little frog seat and then he just started moving one leg only, and I was like what are you doing, bud? And then his lips turned gray and I was like Hello, and then I picked him up and I took him to the room and he was still getting more and more limp and I was like okay, so I started stimulating him and I was like what are you doing? And then finally he snapped out of it. I have no idea why it happened.
Speaker 2:That's what happened, was she? She wasn't turning colors or anything, but, like I knew, the monitor was going to go off and I know, since it did, maybe they're going to be like well, was, will she have come back? On her own. I'm like you don't understand. So I stimmed her again and it stopped and she was I remember calling our pediatrician and yelling at him on the phone like why did you call an ambulance? We avoided sickness as much as we could because we isolated she didn't go to aggression.
Speaker 2:for her, until last year, right after she turned three, first three years of her life, she didn't go anywhere but doctor's office and grandma and grandpa's house.
Speaker 1:I feel like a lot of us were like that. So my son was born. He turned a year when COVID started and it's not like I took him out a whole lot before that because he was a baby. So I totally get that Like this whole I wouldn't say generation, but there's like a group of kids that are about four or five now that went through just a lot of isolation and the desire to not let your kid get sick. After everything we've been through, and also if your kid's been in the NICU, it's real.
Speaker 2:It's interesting introducing family to your baby after that experience, because they were coming to the door to wade through the window. Oh, that's rough. You can't come in and breathe on it, you can't touch it, but you can stand on the other side of the glass and wade.
Speaker 1:Yeah, was there anything we didn't cover that you wanted to talk about? I can think of.
Speaker 1:I think we covered pregnancy and postpartum and NICU and car seats, Exactly I was just about to throw that in and shoes, shoes, yes, and monitors my poor husband Random apneic episodes. Something that I ask all moms that share their birth story on this podcast is if you could go back prior to this experience, at any point where you would want to meet up with yourself and have a conversation and just impart wisdom that you feel would have given you comfort or helped you through the process. What would you go back to say to yourself?
Speaker 2:I would go back to one of my early prenatal appointments and say learn about the NICU, don't scare yourself, don't look up every complication that can land you there, but know their capabilities, know what level, hospital. What did they have? Before I got pregnant, I was dead set on delivering at a hospital with a NICU, don't know why. Just said I wanted a hospital with a NICU because I knew if something happened, that's where the baby goes. I would just learn more about the NICU and have it a part of my prenatal education. Just that this is what level, this is where they go If you don't have a NICU or if they need to be transferred. Just know your resources, but don't scare yourself. Yeah, because not everybody needs the NICU. They're there if you need them, but you don't want to go in blind either Exactly.
Speaker 1:Yeah Well, ashley, thank you so much for sharing and for creating the NICU notebook for families. I think that is just such a wonderful resource to help process and track which is really important when you're if you're a NICU family that it's important to track your child's milestones and understand where they're at and write down all that important medical information and also have a way to go back and process that very unique memory that is a part of your child's first year if you're an ACUE parent.
Speaker 2:There's a lot of little things that you're not going to forget, but some of the little it's very interesting to have a then and now.
Speaker 1:Yeah, yeah, absolutely. I'm so grateful that you have a healthy baby. I'm so grateful that you have a healthy baby, even though she was born at 24 weeks. That's incredible, but I think that you are able to provide wisdom and resources to families that are going through this because of your experience. I hope so. Thank you so much. I am going to hit the stop button and, hopefully,
