Nov. 18, 2024
Twins Born at Week 26: Jennifer Bernardo's Journey of Strength and Hope
What happens when your carefully laid plans take an unexpected turn? Jennifer Bernardo, author of "Week 26," brings us into her world as she shares the complexities of premature birth and the NICU journey. Rushed to the hospital at just 26 weeks pregnant, what she thought was a false alarm quickly turned into the premature delivery of twins due to placenta previa complications. Jennifer's story pulls back the curtain on the unpredictability of childbirth and the emotional and physical hurdles of suddenly becoming a NICU mom. Her candid reflections on her previous miscarriage and its impact shine a light on the resilience required in the face of uncertainty.
As Jennifer's twins entered the NICU, the emotional rollercoaster truly began. With hospital visits becoming a daily routine, she faced the challenge of maintaining normalcy for her older daughter while grappling with the demands of caring for her premature babies. Each twin's unique medical needs, from intubation to CPAP, highlighted the critical nature of their early weeks of life. Jennifer's journey is a testament to the support systems that helped her cope, and her book serves as a lifeline for other parents in similar situations, offering solace and encouragement amidst the chaos.
The transition from the NICU to home life was both daunting and transformative. Jennifer opens up about the fears of becoming the primary caregiver without constant medical oversight and the overwhelming responsibility that entails. We delve into the practicalities of managing follow-up appointments, health monitoring, and the delicate balancing act of meeting the needs of all her children. Amidst the worry about health risks and the relentless demands of parenthood, Jennifer's story highlights the strength found in family support and the unwavering hope that fuels her journey. Her memoir, "Week 26: A Memoir of Hope, Faith, and Perseverance," stands as an inspiring beacon for families facing similar trials, offering insights and comfort to those who need it most.
Connect with Jennifer at https://www.week26.com/
And find her on instagram https://www.instagram.com/week26mom/
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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.
Chapters
00:00 - Unexpected Twin Birth at 26 Weeks
10:08 - Navigating the NICU Journey
15:30 - NICU Challenges and Milestones
25:59 - Transitioning Home From the NICU
34:54 - Motherhood and Finding Hope
Transcript
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Hello, today I have with me Jennifer Bernardo.
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Jennifer is a first-generation Portuguese-American who authored her first book, week 26, aspiring to help others, all while leaving a legacy for her children.
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She received her bachelor's degree from George Mason University and was once a journalist on a kids' television show.
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When she's not working or spending time with her family and friends, she's surrounded by or spending time with her family and friends.
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She's surrounded by her pets, listening to music and enjoying the outdoors.
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Her life is fueled by her children, her family and her culture, all of which have made her who she is today.
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Today, jennifer will be sharing her birth story with us and the inspiration for writing her book, week 26.
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Jennifer, welcome and thank you for joining me.
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Thank you for having me.
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I am so interested in hearing the stories that were the inspiration for Week 26 because when moms come to the hospital finding out that they're going to deliver that early, there is so much that they go through and as a nurse, there's only so much that I can do to help that process along because we're focusing on the physical.
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So I'm just really curious to hear your perspective and how your whole journey colored your perspective, yeah.
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So to be honest, when I was rushed to the hospital, I did not think I was going to give birth at that time I was only 26 weeks.
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You really, it's just not what you expect so early in the game.
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And I had talked to my OB on the way to the hospital and she's like oh, I don't think you're going to be giving birth to these babies today.
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Everything's going to be fine.
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You just get to the hospital and get treated and let's see what's going on.
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So in my mind I'm thinking positively, I'm trying to be optimistic and I get to the hospital and I'm stabilized and just think I'm going to be on bed rest and sitting at the hospital for a couple weeks to be monitored.
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So it wasn't until my third hemorrhage due to placenta previa that I was told, while laying in the hospital bed, that we were delivering the babies at that very moment.
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So it was very unexpected Lots of questions going through my head, but at the same time, because I was losing so much blood, I was losing it, if you will, and not able to focus and understand really what was happening, and I was fearful for my life at that moment as well as for my babies.
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So it was a very traumatic experience, to say the least, and very unexpected.
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You don't, as a mom who's pregnant, you think you're going to go full term, or at least till 35, 36 weeks.
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When you have twins, you don't think that you're going to deliver at 26 weeks.
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So, yeah, so it's very unexpected and very traumatic.
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I can only imagine and this wasn't your first birth right, you had pregnancies prior to this one I did yes.
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So I did have a daughter at home already.
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She was five years old at the time and her pregnancy was.
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She went to full term.
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It was a fairly easy, no complications pregnancy.
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I didn't even have sickness.
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It was simple.
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And I did get pregnant and unfortunately had a miscarriage very early on.
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But then we kept trying and eventually got pregnant again and found out we were having twins.
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Given I had such a simple breezy first pregnancy, you hope and pray that the next one is going to be the same, just never know.
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It was just a situation that I was not prepared for.
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Yeah, so I want to go back and talk about the first birth and how it might have compared to the second.
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Did you have an induction or were you?
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Did you go into labor?
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Did you have a birth plan?
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Did you?
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How did you prepare for that?
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And then how were you trying to prepare for the second?
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And then how did you pivot?
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Yeah, I mean my first pregnancy.
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My water broke at home I believe I was 39 or 40 weeks at the time, just sitting on my couch and water breaks, and we just went to the hospital and had my daughter a couple hours later after some very vigorous pushing.
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But yeah, I did get an epidural, which, for me, was part of the plan and really helped.
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It was my first pregnancy.
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I was scared.
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It was a natural birth and yeah, that's the stories that you hear your water breaks, you go to the hospital and your baby's delivered.
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So that's how it happened on the first pregnancy.
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So really, straightforward.
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Pretty straightforward, yeah, pretty uneventful, except for giving birth to my first child.
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So then, when you got rushed to the hospital at 26 weeks, what was going on and what was the reason that you felt like you needed to go to the hospital?
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And what was the reason that you felt like you needed to go to the hospital?
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Yeah, so I was.
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It was the middle of the night and I was awoken by a feeling of a bucket of water had just been poured all over me.
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I was not in any pain whatsoever, but just knew something was not right.
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So I frantically got up and I rushed to the bathroom and realized that I had been bleeding.
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And I rushed to the bathroom and realized that I had been bleeding.
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I had been at my high-risk doctor that previous week for some light spotting and they had discovered that I had a slight placenta privia, but that I was told that most likely it was going to resolve on its own.
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So I wasn't really too worried about it, but they did tell me and I remember this like it was yesterday.
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My OB said if you start bleeding profusely down your legs, you need to rush to the hospital immediately.
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And that is exactly what happened.
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About two days later.
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That's what got me.
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My husband rushed us to the hospital the nearest one, which was about 10 minutes away, not even and went to the women's center to get checked out.
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So was it even the hospital that you had planned to deliver at?
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It was not.
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Yeah, we made the decision to go to the nearest hospital which thankfully had a level four NICU, and if we so I'm thankful that's where we ended up and made that decision to go there, even though it wasn't where my regular doctor was located.
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And so then you got there thinking still that you probably wouldn't have to deliver the babies at that point.
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What transpired to make the doctors decide that you needed to deliver at that point?
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After they stabilized me and told me that I would most likely have to stay in the hospital to be monitored for another week or two, I ended up hemorrhaging two more times, and the last one was just.
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It was too much to the point where the room became very chaotic Nurses, doctors rushing in and out and they told me that I was going to deliver my babies at that very moment and before I knew it, I was being given a blood transfusion and rushed down to the operating room to have an emergency C-section.
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And what was that experience?
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Like you said, you were rushed down to the operating room.
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Were they taking you down on a bed?
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Did you get spinal anesthesia or did you have to get general anesthesia and not be awake for the surgery?
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How did that end up happening?
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I was rolled down on the bed because at that point I had lost so much blood that I could barely focus.
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I could barely keep my eyes open at that point.
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So I was rushed down and given a blood transfusion and a spinal anesthesia.
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So I was awake the whole time and within minutes the babies were out of my belly and immediately taken and put into incubators to be then rushed up to the NICU.
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Did you get to see them before?
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they were rushed up to the NICU.
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I did not.
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I got a slight glimpse of my daughter only because the nurse brought her over to me.
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But it was very quick and I was so out of it that I really didn't even get to enjoy the moment and she was taken away.
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Really, quickly.
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So you said you got blood transfusions.
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Where did you end up?
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Did you go back to postpartum after delivery or did you have to go to a different unit?
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I believe I went to postpartum to recover, so you were stable.
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It was just mainly concerns about replacing the blood and taking the babies where they needed to be.
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Yeah, I just needed time to basically recover and heal.
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So I was taken back to my room.
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What was the process of you being able to go see your babies, because every hospital has a different procedure for that.
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Yeah.
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So my husband went up and down to make sure the babies were okay and then came to see me and all I had were really pictures of them.
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Everything felt very surreal until I was actually able to go up and see me and all I had were really pictures of them.
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Everything felt very surreal until I was actually able to go up and see them.
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But my husband, joe, he spent a lot of time with them upstairs in the NICU with them and just was able to speak to the doctors and the nurses and really try to understand what was happening, and then he would come down and tell me what was going on.
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I could not go up until I was able to get in a wheelchair and be wheeled up there to see them.
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So it was probably about a day and a half before I was able to get up there and see them, which was pretty nerve wracking.
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Took me up there, I saw them and it was an experience I'll never forget.
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They shared a room, a double room, because they were twins, and very dim Lights were down.
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All you could hear was the sounds of their CPAP machine, the oxygen machines and the monitors going off, and it was just something I'll never forget.
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And that just became our new normal for the next four and a half months of going to the hospital and visiting them and making sure that our daughter at home was still living a normal life and understood what was happening with her brother and sister at the hospital, because she was very confused, had lots of questions, and, while I had a lot of support with family and friends and with the hospital support groups, I looked for resources that would give me hope and just tell me that the babies are going to be okay, you're going to be okay, everything is going to be fine, because that's what you want to hear when you're going through a situation like this.
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And so that's what inspired me to write the book, because I looked for things like this, for books like this, and there were not very many.
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There was a lot of educational materials and resources provided by the March of Dimes and that sort of thing, but not really stories about this situation and how to help a mom or father go through a situation like this and what to look for.
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And so, while I didn't start the book right away because I was dealing with a lot, obviously, the first couple of years I tracked all of their milestones while they were in the hospital and I always took notes and I kept a calendar at home that every day I would mark their weight, even if it was an ounce or two here and there.
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And that was something I did with my daughter because it gave her hope too, that they would be coming home soon.
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So we tracked their weight, we tracked all of their milestones the days that they were off oxygen, that they started feeding from a bottle, that they reached a certain weight that they were able to get to a normal crib, all those major events that were one step closer to them coming home.
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So I had all of that on paper the good, the bad and the ugly.
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Obviously there was a lot of issues here and there they had a lot of tests that they had to run.
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Those first two weeks were very critical, but this book transpired from all of those notes that I had taken and all of my feelings that I had been going through.
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And one day my husband said why don't you just write a book and leave this for your kids and tell them their story?
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And I thought about it and my instinct was I have no idea how to write a book and get it published, but it took a lot of time and effort.
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No-transcript they're not really talked about and he had his own ways of coping and he had his own story of what he was dealing with during the whole situation.
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And then I have perspectives from my daughter as well, because she was going through a lot and she was confused and she wanted to meet them so bad and she didn't understand why she couldn't go see them.
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They were, of course, born in the dead of winter, so because of flu season she could not go to the hospital, so she didn't even get to meet them for a couple months.
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So that was unfortunate and trying to explain that to her was really tough.
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That moment when she did come to the hospital and we had finally a family reunion of the five of us together in one room, it was a beautiful moment and something we had waited for and longed for for a very long time.
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So it was once.
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They got through those critical first weeks, months, things started to trend in the right direction and we were very hopeful about the situation and looked forward to what was to come.
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Going through this situation, or fathers who like to read, who can get a perspective from a dad and give them an ounce of hope, and anything that can help them get through something like this, because that's what I looked for when I was going through that journey.
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So it's a book of inspiration.
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Their story is super inspiring and I understand that not every story ends as positively as mine does, but if it can be a healing journey for someone that's going through this, that's what I'm hopeful for.
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Yeah, I think that's all really important because it is so scary if you're in this experience, or even if your child is in the NICU later or for whatever reason, the natural instinct is fear and then not knowing what to expect, and I think you look to examples from other people of what is possible.
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But yeah, I agree, I think it's really important for moms to have something to identify with, because it's just it's so hard to be in that situation and not have anything to draw from.
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It's a very lonely time, it's a very scary time and, yeah, I think having something to help you get through the process anything is good to have.
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Yeah, I want to go back to the delivery.
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You said they took them to the incubators.
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Did they have to be intubated?
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Because you did mention that they were on CPAP.
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What were the?
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interventions that were needed.
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Yeah, they didn't start off on CPAP.
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So my son was intubated right away, immediately when he first came out.
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My daughter, I believe, was put on I think the CYPAP before the CPAP.
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So, yeah, he had to be intubated and he was probably intubated for about a week, I would say before he was able to come off of that.
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I would say before he was able to come off of that.
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But he went through multiple oxygen machines before he went to CPAP and then onto the regular cannula.
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Yeah, it's very promising when you have a 26-weeker that doesn't have to be intubated.
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And it's interesting because my daughter, who was not intubated and was on CPAP she actually had a harder time getting off of the oxygen than my son did, who was off a lot sooner, but then he had issues trying to drink from the bottle and be able to intake the milk that was required before he could come home, Whereas my daughter did really well at that but had issues with the oxygen.
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Wow.
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So then you got to go up and see them.
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And then how is that for you?
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I'm assuming, if your son was intubated at that first time and your daughter was on either side pap or CPAP, depending on when she was weaned were you able to hold them?
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What was it like in those first few days, and how were you able to cope with them being in the NICU and seeing what they're attached to, and did you have any kind of mental preparation for that?
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Or was that initially like a big shock?
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Because I know a lot of parents they look at their baby and they're like, oh my gosh.
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Yeah, I had no preparation whatsoever.
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I didn't even know what to expect.
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I didn't Google anything before I went up there.
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The only thing I saw were pictures of them that my husband had taken when they were first born, and it was a huge shock.
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It was really unbelievable to look at and to see your child like that, hooked up to wires and masks and tubes, and you're just helpless.
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You feel, as a mom, that your worst feeling is to feel like you can't help them and there's nothing you can do to save them or get them out of that situation.
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So I went up there and I think the reality had set in as soon as I saw them and I just broke down.
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So let me take a minute Completely understandable.
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Yeah, every time you relive it, it's so hard.
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It is.
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It's hard.
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That's been, I think, the hardest part about this.
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It's great to share your story, but it's also hard to constantly relive it over and over again.
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Yeah, yeah, I didn't have.
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Really, I wasn't prepared at all when I went up there and I just took it with what it was and just prayed for the best and that was really all I could do.
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There was nothing I could do at the time.
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Yeah, that's really.
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I think what moms struggle with the most is that we have that maternal instinct and we want to be a part of that and there's so little that you can do because they're supposed to still be inside of you and so, essentially, you are living watching these babies doing the things that they're supposed to be doing while they're still inside of you.
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It's hard because you can't really.
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You wouldn't be physically caring for them, like with your hands and all of those things, if they were still inside of you, and that it's the same thing.
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When they're outside of you and they have to recreate the placenta on the outside, Essentially they're giving them the oxygen, they're giving them their nutrients, they're keeping them in a warm environment because their bodies are not prepared to deal with the outside world yet.
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And that's really hard because the nurses and doctors are the ones that can help with that and there's limits to how much touch they can receive and how much stimulation and whether you can hold them or not.
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It's really hard and parents struggle with that a lot.
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Do you remember when you did finally get to hold them?
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I did.
00:19:11.153 --> 00:19:26.069
I didn't get to hold them for probably I think it was two weeks before I held my son and my daughter was still very fragile and still having a lot of apneas and brachycardias that they didn't feel comfortable her coming out.
00:19:26.069 --> 00:19:36.756
So I did hold my son, was able to hold him first for briefly before he had to go back, and then shortly thereafter I held my daughter as well.
00:19:36.756 --> 00:19:48.958
And that was hard too, because you're sitting in this room with both of them and you can only hold one and you're looking over at the other and you feel I'm so sorry that I can't, I can't have you here with me.
00:19:48.958 --> 00:20:00.931
But when I did know that I was able to hold her, I had my husband come in and we both he held one and I held the other and we the four of us sat closely and it was nice.
00:20:01.270 --> 00:20:08.432
But yeah, it's hard when you've got two because you want to give equally to both of them and can't.
00:20:08.432 --> 00:20:11.440
So you try to do the best that you can with what you're dealt with.
00:20:11.440 --> 00:20:15.796
But once I was able to hold them, I probably held them every single day.
00:20:15.796 --> 00:20:17.599
I did the skin to skin.
00:20:17.599 --> 00:20:22.115
I took part in their care times, which were every three hours.
00:20:22.115 --> 00:20:39.835
I made sure to be there for at least one or two of them per day so that I could use that as an opportunity to touch them, to talk to them, to change their diaper, check their temperature and just be there with them so that they could start feeling me in the room and try to take part in their journey and growth.
00:20:39.835 --> 00:20:44.833
Those times were super important to me, that I was there for those moments.
00:20:45.134 --> 00:20:47.900
And did you have the option to breastfeed them?
00:20:47.900 --> 00:20:49.663
Yes, were you able to pump?
00:20:49.829 --> 00:20:54.434
Yeah, I started pumping probably on like day, probably one or two.
00:20:54.434 --> 00:20:59.674
I remember I was in the recovery room and they brought me a breast pump and said let's get started.
00:20:59.674 --> 00:21:10.654
And it was nice because when I was able to go upstairs they would give me a little Q-tip and I would give them the breast milk on their tongues just to give them a little taste.
00:21:10.654 --> 00:21:16.336
And it was super cute because their instinct was to react and to drink it.
00:21:16.336 --> 00:21:20.490
So that was nice to have that experience in the beginning.
00:21:20.592 --> 00:21:29.135
But yeah, pumping was like the one thing that I felt where I was doing something to help the situation and to provide milk for them.
00:21:29.135 --> 00:21:37.718
So that made me feel really good about trying to give what I could, especially giving them my nutrients to them as much as possible.
00:21:37.718 --> 00:21:40.403
So I was constantly pumping.
00:21:40.403 --> 00:21:45.663
A lot of times I would just sit in their room and when they were sleeping I would be pumping.
00:21:45.663 --> 00:21:47.953
So, yeah, I was able to do that.
00:21:47.953 --> 00:21:51.781
And then, as soon as I was able to breastfeed, I did do that as well.
00:21:51.781 --> 00:22:00.998
I was not as successful as I would have liked to have been, but we did do as much as we could for both of them and that was nice as well.
00:22:01.179 --> 00:22:06.955
And then were they able to get some other supplementation like formula, or did they have donor breast milk at the hospital?
00:22:07.777 --> 00:22:10.490
Yeah, they got a lot of donor breast milk.
00:22:10.490 --> 00:22:19.664
It was a fair amount of time that they got donor breast milk in addition to my breast milk, but where I could not fill in, they were able to get donor, which was nice.
00:22:19.664 --> 00:22:20.931
Yeah, that's really helpful.
00:22:20.931 --> 00:22:22.212
How old are they now?
00:22:22.212 --> 00:22:22.834
They're five.
00:22:23.635 --> 00:22:27.423
They're five, wow so your hospital had it for a long time.
00:22:27.423 --> 00:22:29.935
I know other hospitals have just now started.
00:22:29.935 --> 00:22:31.640
It's becoming way more common now.
00:22:31.640 --> 00:22:34.797
When I started in labor and delivery it wasn't always available.
00:22:34.797 --> 00:22:36.885
It wasn't even really considered.
00:22:36.885 --> 00:22:42.541
People had just started talking about donor breast milk and there was like the oh, why would you drink somebody?
00:22:42.541 --> 00:22:48.785
Else's milk and it's like you drink a cow's milk, so why can't we normalize human milk?
00:22:49.474 --> 00:22:50.156
But it really does help.
00:22:50.156 --> 00:22:50.980
Why wouldn't you want the nutrients?
00:22:50.980 --> 00:22:52.324
I mean, yeah, exactly.
00:22:52.744 --> 00:22:54.258
Yeah, but also it helps.
00:22:54.258 --> 00:23:08.486
The studies that ultimately made it more normalized showed that necrotizing enterocolitis of the newborn is greatly reduced by breast milk, whether it is mom's breast milk or donor breast milk, whether it is mom's breast milk or donor breast milk.
00:23:08.486 --> 00:23:25.417
And so there was a big push to start making sure that the breast milk donation process was just as good as the process of donating blood or other organs, so that babies could benefit from human milk, because there's a reason that human milk is good for them.
00:23:25.518 --> 00:23:30.886
And while there's also the argument that the mother's breast milk is made just for the baby.
00:23:30.886 --> 00:23:38.865
We can't always have ideal circumstances, and wet nurses have been nourishing babies since the beginning of time, right?
00:23:38.865 --> 00:23:39.886
So why not?
00:23:39.886 --> 00:23:40.627
Yeah, yeah.
00:23:40.688 --> 00:23:46.287
It needs to work and if I can't provide it, that's the next best-case scenario.
00:23:46.287 --> 00:23:53.086
I truly believe it helped them get what they need and it helped them get through the NICU, so I'm grateful that it was available for them.
00:23:53.355 --> 00:23:54.798
Yeah, I think that's really important.
00:23:54.798 --> 00:24:10.962
So anything else that stood out to you in the NICU that you feel was pivotal or something you weren't expecting or a challenge that really stuck with you, that you want to share about before we move on to transitioning to home life, that really stuck with you that you want to share about before we move on to transitioning to home life.
00:24:10.982 --> 00:24:13.507
Yeah, I think another big moment was when my son.
00:24:13.507 --> 00:24:15.895
We discovered he had retinopathy of prematurity.
00:24:15.895 --> 00:24:22.115
The eye exams were very painful to watch, even though I was told that it's not painful.
00:24:22.115 --> 00:24:28.348
They were receiving eye exams every week to check for retinopathy of prematurity.
00:24:28.348 --> 00:25:00.566
I was receiving eye exams every week to check for retinopathy of prematurity and when I got the notice that he had stage three and that if we didn't perform laser but it was touch and go there for a little bit and it was really hard to see him go through that and be so vulnerable like that at a very young age.
00:25:00.566 --> 00:25:04.278
But that was another event that happened that was stuck with me through that time.
00:25:04.278 --> 00:25:06.507
Everything's fine now, everything turned out great and I think that was another important me through that time.
00:25:06.507 --> 00:25:11.535
Everything's fine now, everything turned out great and I think that was another important moment through their journey.
00:25:11.674 --> 00:25:24.067
Yeah, that's hard, because you can't prepare the child for what they're about to go through and you can't explain why they're going through what they're going through, and so it just makes it harder on you especially if they probably doesn't remember it.
00:25:24.067 --> 00:25:26.060
And yet it was really.
00:25:26.060 --> 00:25:26.864
You remember it?
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