65-Angela Roberts-IVF-Miscarriage-Cesarean-Endometriosis-Preeclampsia-HELLP-Micro Preemie-NICU-Bennett

The image above is of Bennett soon after he was born via cesarean at just 25 weeks gestation.

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Description:

In this episode, Angela talks about her struggles with conception through IVF due to her late diagnosis of stage 4 endometriosis. She also talks about her micro preemie birth experience with her son Bennet at just 25 weeks gestation in addition to some of the details of how having a tiny sick baby in the NICU was impacted by the COVID-19 Pandemic.  

Disclaimer: This podcast is intended for educational purposes only with no intention of giving or replacing any medical advice. I, Kiona Nessenbaum, am not a licensed medical professional. All advice that is given on the podcast is from the personal experience of the storytellers. All medical or health-related questions should be directed to your licensed provider. 

Tune in to episode 33- Jennie Joseph-Vaginal Birth- Endometriosis-Hysterectomy-Commonsense Childbirth-Luke to hear another story.

Resources:

• Project NICU: https://www.projectnicu.com/ 
• Hand to Hold: https://handtohold.org/ 
• Preeclampsia Foundation: https://preeclampsia.org/ 
• Perinatal Support of Washington: https://perinatalsupport.org/ 
• Postpartum Support International: https://www.postpartum.net
• Chances of Miscarriage Data: https://datayze.com/miscarriage-chart#google_vignette 

Definitions:

• In Vitro Fertilization (IVF)
• Preeclampsia
• Endometriosis
• HELLP Syndrome 
• APGAR Score
• Necrotizing Enterocolitis (NEC)
• Acute Respiratory Distress Syndrome (ARDS)

Thank you so much for tuning in to this episode!

If you want to share your birth story or experience on the Birth As We Know It™️ Podcast, fill out this Guest Request Form. 

Support the podcast and become a part of the BAWKI™️ Community by becoming a Patron on the Birth As We Know It Patreon Page!

Want to be in on the fun conversations and a part of an awesome community? Join in on the fun in the Private Facebook Group! 

Transcription of Episode 65:

Kiona 0:08
Welcome to Birth As We Know It, a podcast that is dedicated to recognizing the many different ways that birth unfolds. I am your host, Kiona Nessenbaum. I have experienced birth as a doula, a student midwife, a birth assistant, and as a mother of three amazing children of my own. After attending over 140 births, I’ve realized that each birth experience is truly unique. So make sure you subscribe and join me as we are guided through many different birth experiences through the lens of the storyteller. Please be aware that some of these stories can be triggering to hear. So feel free to pause, take a breath, and come back and listen whenever you’re ready. With that said, let’s prep ourselves to dive deep and get detailed about what really happens in the birth space.

Kiona 1:05
As a reminder, this podcast is intended for educational purposes only and has no intention of giving or replacing any medical advice. All advice that is given on the podcast is from the personal experiences of the storytellers. All medical or health related questions should be directed to your license provider.

Kiona 1:25
Before we dive too deep into this episode today, I want to give a huge shout out to my very few Patreon members. I value each of you so much because your support really makes a difference. And because of your support, I was able to purchase an amazing pair of headphones a couple of weeks ago and I just wanted to give you an update and say that they are amazing. They are making it possible for me to edit this podcast with so much more precision. so thank you so much. I truly appreciate you so, so very much. And if any of you listening want to support the podcast, you can do so by going to

birthasweknowitpodcast. com/support. Now in today’s episode, Angela talks about her endometriosis experience as well as some other health issues she has throughout her pregnancy. But before we delve into that, I want to say that if you want to hear another episode that talks about experience with endometriosis, I advise that you listen to episode 33 with Jenny Joseph. In that episode, she talks about a surprise pregnancy experience with endometriosis. Don’t hesitate to tune in to that one next. All right, let’s get into this episode.

Hello everybody, and welcome back to the Birth As We Know It podcast today. The guest I have on is Angela Roberts, and Angela is going to be talking about her pregnancy and birth experience with her son, Bennett. So welcome, Angela. Thanks so much for coming on today.

Angela 2:55
Thank you. I’m so happy to be here.

Kiona 2:58
Yeah, I’m really excited to get into the details of your story because you have experienced some things that aren’t talked about enough. I think we do hear a little bit about pre eclampsia and IVF, but we have not heard much about help syndrome yet. And those are things that you touched on in your guest request form. So I’m excited to dive in and just hear how your journey to parenthood began. So before we dive deep into your conception and pregnancy, let’s just have you tell us a little bit about yourself and who’s in your family.

Angela 3:30
My name is Angela. I’m married to my husband, Nick. We just celebrated our seventh wedding anniversary. We’re about to celebrate our seventh wedding anniversary. We met in college and dated for a little bit, and then we got back together a couple of years later And then got married. I also have stage four endometriosis, and so I knew going into any relationship that conception would be difficult. And so I was very clear with that about him. Like we may need fertility treatments. we got married in 2017 and then we began sort of we kind of were thrown into preconception things like treatments and things because of the endometriosis issues I was having. So I needed a couple surgeries. I ended up needing to get my tubes removed because they were like leaking fluid into my uterus. And if we’re spending all this money on IVF, we want to make sure the embryo has a good home to go to. and then we started the IVF process

Kiona 4:34
Wow. Yeah, that’s definitely a journey just from the get go. When were you diagnosed with stage four Endometriosis?

Angela 4:42
that was in August ish of 2017. So I knew like something was off. I had had a couple they call them endometriomas, which is like a cyst filled with blood. before I met Nick and before we got married and those both needed surgery. And they didn’t say you have endometriosis. They said you had a blood filled cyst. the delay of that diagnosis is upsetting. On average, women wait about ten years to get diagnosed with endometriosis and just all along it’s wreaking havoc on your insides. And so forming all these adhesions, all this scar tissue and just preventing natural conception in a lot of women. I feel like if I had been diagnosed sooner, I might not have needed IVF, but that’s where that’s where we ended up going.

Kiona 5:35
Yeah. So how long was it between finding the blood filled cysts that they called endometriomas to diagnosis? L what was the length of time between there?

Angela 5:45
Um, well, I actually we got married, like in June of 2017 and in the fall of 2017, I had some pain in my abdomen. We went to an emergency room, and they did some scans and they said, You have a tumor. They sent me to UNC Women’s Cancer Center there they didn’t know what it was when they went in and removed it. And after that surgery, like when I woke up after that surgery is when they said you have stage four endometriosis and it’s not like a cancer staging. It’s not like stage four is worse than stage one. It’s just a different like where the endometriosis is located. So like in in my instance, like for stage four it means my endometriosis is in my ovaries and so every time I have like a natural cycle, the cysts that my body would like naturally make would just keep growing and growing and growing. And the biggest one I had was 14 centimeters the one in the fall of 2017 that they took out and actually they cut me vertically, like from under my belly button down to like the top of my pelvic bone. That hurt so bad. That was the worst pain of my life.

Kiona 7:06
You talked a little bit about how you already told Nick that you guys were going to have to do some work for conception. And what did that process look like for you guys?

Angela 7:15
He had always wanted to be a father, and so he was very supportive always right there cheering me on. You know, whatever we have to do, we’ll do it. W had to take out a loan. It’s very expensive. As everyone knows, we ended up spending probably about $25,000 on the whole process, but we did the egg retrieval and got some good eggs and then they injected the sperm into each egg We got four good embryos and then we had the genetic testing done because it was like another little small cost on top of the big cost. And I was like, if we’re doing all this, we might as well make sure the embryos are healthy. So we did that and we lost one embryo to a chromosome deletion. so we had three embryos. Of course, like with the genetic testing, you are allowed to I mean, you can find out the sex of each embryo. We chose not to because we only had three remaining. And so I was like, if it’s two girls, one boy, and then we try that one boy, then I know I can never have a boy or something like that. Like, I was like, it’s too few for me to know this information. I don’t want to know. So we just did our first transfer, this was in January of

2019. So they do the transfer. You have the two week wait and then you have your blood test at the fertility clinic and then they call you and tell you so that one did not stick. some people would call that like an embryo loss. I don’t know how I feel calling it that. It is definitely the loss of a viable embryo but it was really hard and it was really sad. And I felt really guilty for not being able to get pregnant, with my husband. Like, I just I felt horrible for him. that was really hard. And then we saved and saved and saved. And then July 5th of 2019. And the only reason I remember that was because that’s my husband’s birthday. We transferred our second embryo. And during the IVF protocol, you are taking certain medications to build up the lining of the uterus. Mine was just like not getting there and not getting there. So we just, like, kept trying. We were like, okay, we’ve already spent 1500 dollars on this cycle. Like, if we can just keep going a few more days and maybe the lining will be thick enough for the embryo. We don’t want to like waste. Then all the medication we’ve already paid for and all of the appointments we’ve already paid out of pocket for. And so we did that. And so when I over a couple extra appointments, a couple extra scans, couple extra days of medicine and my lining was just thick enough. So out of the two embryos we had left, we chose the one with the lower score. So when you have embryos, they grow for five days and then they freeze them, they score those embryos. So we put in the lower quality because my lining was barely thick enough. And then two weeks later my husband comes home from work. He checks my phone and sees the email from our fertility doctor saying Congratulations and so then I just called everyone and we were, you know, just FaceTiming with people and super excited about having a positive pregnancy test. It was the only positive pregnancy test I’ve ever had in my life. So that was wonderful.

Kiona 10:44
hmm. yeah. Oh, that sounds so awesome. it’s kind of cool for him to see it first to since it happened, like, on his birthday, You know?

Angela 10:52
Yes. that was a really special day.

Kiona 10:55
Yeah. Oh, yeah. That’s so awesome. one question I do have, though, is what was going through your head, like, obviously you were happy and excited, but what was the next move?

Angela 11:07
I was just incredibly anxious. I was very nervous because I like I said, I never had a positive test before. And then you stop doing the progesterone injections to help support the pregnancy at a certain point. So I was really nervous to stop those and I was home for the summer as a teacher, so I wasn’t distracted. I had nothing to distract me. I was very excited. But I was also like overwhelmingly nervous.

Kiona 11:39
at any point, were you nervous to tell more beyond your immediate family because you were afraid of loss?

Angela 11:45
Yes. I didn’t tell anyone except for my closest friends and my closest family. Not even my entire family knew. And so I went back to school in August, told no one, didn’t even tell my principal. None of my co-workers, none of my students I was barely showing at that point, like just barely. And so nobody said anything. So I just was like, okay, they don’t notice. I’m just going to keep it zipped until it’s time to share or until I feel comfortable sharing and what ended up happening was I had a wonderful group of students in my fourth period. I was teaching high school chemistry and I had this one student who loved all of her teacher. She was just like a joy to have in the class and a joy to be around And she walked in so excited that day and she said, Oh, miss, such and such is pregnant. And I go, Oh, my God, me too. Like, that’s how I told my students. I just said, Me too. saying the words I’m pregnant were really hard for me. And then after I told my students that day, I told the other chemistry teachers. And so I brought them all into one of our classrooms at after school one day. And I said, Hey, guys, I am going to have a baby in March. And as soon as I said the words, I knew it was a lie. I don’t know how else to describe it. Like, I don’t know if it’s intuition. But the words came out of my mouth and I felt like I was lying. And that was like probably in October ish. and then Bennett was just born a few months later.

Kiona 13:21
mm. So throughout your pregnancy, was it easy to hide or did you have, like, a lot of symptoms that you were trying to avoid people seeing, or what was that like?

Angela 13:33
I had no symptoms. I only got sick one time in the shower, and it’s because I was brushing my teeth. You know how, like, that can trigger some women? That’s the only time I got sick. I did feel, like, really tired, and I just used to say, like, Yeah, I’m tired. My body’s pregnant. It’s trying to, make a whole human being. And I’m so tired. And that’s why and that’s so exciting and that’s wonderful, like, to my husband, you know. I kept waiting to be nauseous. My mom didn’t really have any, negative pregnancy symptoms either. I only felt a move a couple of times before he was born because he was also, like, pretty small for his gestation age because of the pre-eclampsia that I developed. But there were no, medical issues up until 23 ish weeks, no complications. Like I felt fine And that brings us to like December.

Kiona 14:21
was December when you got diagnosed with pre-eclampsia. And did you get all the diagnoses at one time, like help and pre-eclampsia? Tell me the journey of those.

Angela 14:32
I think I had like a routine checkup around 23 weeks and I went in. My blood pressure was super high, like to the point that they sent me from my clinic across the street to the Labor and Delivery Emergency department, which we’re really lucky to have that I don’t know if that’s very common if you hear about that a lot, but we have an emergency room just for pregnant women or people, that makes you feel really good when you go in there that you’re not going to be written off. They’re going to take care of you. Exactly how you are because you have it. There’s different situation here. So I felt really well taken care of. and they said, okay, you need to be on blood pressure medicine. this might be the beginning of preeclampsia. We’re going to send you home with a 24 hour urine collection bottle. And at the time I was drinking so much water, I told them I need a bigger container. And they were like, No, no way. That’s never happened. So my husband had to go to the hospital, back to the hospital. I think it was like mid to late afternoon on like a Sunday. Go back to this emergency. Luckily, it wasn’t too far, but he had to go get another container because the volume was so high. This is embarrassing because the volume was so high, it wasn’t a conclusive protein test. And so they were like unable to determine and inconclusive. And so I had to do another one. And they were like, it’s borderline. But I still think it’s because I was drinking so much, like I wasn’t drinking too much water, but I was like very hydrate. It was hot. I was prioritizing drinking enough water and very proud of myself for that. But it ended up probably delaying true diagnosis by about a week. So they sent me home with blood pressure medication, strict like follow up instructions. And I was like, okay, great, this is fine. This is totally everything’s going to be fine. I’m going to this happens to a lot of women. I’m going to take this blood pressure medicine and everything’s going to be fine. about a week goes by. So I was exactly 24 weeks pregnant and it was a monday. I had a horrible headache. And that’s one of the things they tell you. If you have a headache that is not helped by Tylenol, you need to call your doctor right away. I knew the implications sort of of preeclampsia, like I knew it could be really dangerous. But in my head it still wasn’t that serious. I was like, I’m taking the medication. My blood pressure is under control. Like, it’s going to be fine. Like, how can it not be fine? It’s going to be fine. So I was teaching all day with again, amazing students. I had one student in one of my classes who filled up my water jug every day. It was like in the middle of the day he would go, Fill it up for me. Mrs. Roberts, you need to drink your water They were the best. And I’m making a point to talk about them because when I told them I was pregnant, they said, Oh, my gosh, Ms.. Roberts, you’re not going to be here our final exam. And I was like, Oh, my gosh, yes, ma’am. Your final exams in January, baby, is not due until March. I’m going to be here. Don’t worry. I’m going to get you through to the end. And obviously, I wasn’t able to do that. But they sent me cards. They were amazing. I just want to point that out. They were incredible. But so I taught all day. My husband, I called him when the blast bell rang and I said, I have this horrible headache. it is unlike any headache that I’ve ever had before. It’s the whole back of your head and neck is a pre-eclampsia headache. I had no other symptoms, though. My blood pressure was still under control, everything was fine. So he picked me up from school, took me back to the doctor’s office. They measured my blood pressure. It was 180 over or like 110, and they didn’t even finish with the appointment. They said, go to the emergency room right now. And so again, we went across this was like just happened a week ago. Here we are again. We’re going right across the street to the labor and delivery, E.D. it was different this time. So it was exactly 24 weeks. The nurses were like in and out. the first time I was there, it was very calm and like peaceful. And this time there was so much urgency behind all of their movements and the way that they spoke to me. I was like, Why are they acting like this? Like I kept looking at my husband, like, what am I missing? Something Like, what is going on? Why is everybody making such a big deal? one of the nurses taking care of me who I’m still like in touch with, she’s my Facebook friend now because she found me because she was so worried. She was she was so kind. She was also pregnant at this time and had recently been diagnosed with preeclampsia. And she said, I also have preeclampsia. Look at my compression socks. I’m still pregnant. Like, you can stay pregnant with preeclampsia. They can help you stay pregnant. And I’m like, okay. So immediately that helped me feel at ease. So that plus all of the urgency around me was really confusing. one of the doctors that I hadn’t seen yet, because, you know, when you go to the gynecologist’s obstetricians office, they make you see all the doctors. So whoever’s on call you will have at least met before. I hadn’t even cycled through all of them. I didn’t even do a glucose test yet, so they got the doctor in there who I knew of, but I didn’t know her. And she looked at me and said I would be really surprised if you’re still pregnant a week from now. And I was like, What? Like that? When she said that, that was the first time I knew something was like, wrong. I was in such shock. And of course, like, my blood pressure was high because of that. Now after she said that, they got magnesium started, they got a catheter in because you can’t get up when you are on magnesium, they sent me in an ambulance from one hospital that I was at to a bigger hospital about 30 minutes away, which was UNC Hospital New and Chapel Hill because they have a level for Non-icu. And so I was still just like, they’re making a big deal. Like this is something something’s wrong. they’re either doing something wrong or something’s really wrong with me. And I really thought that they were being overly cautious. So I get to UNC on the anti partum floor and again had incredible, amazing health care workers, even the CNA’s were so kind to me. I’m still in touch with couple of those people who took care of me in there, too. But I got, you know, situated. They were like, you’re being admitted. You are going to be here until your baby is born. And I was like, Oh my gosh, I’m going to be here for four months, three months.

And this point was December 1st. And so I was like, ok, we’re going to have Christmas here. We’re going to it’s going to be fine. Whatever.

Kiona 21:06
that’s a lot of information to process.

Angela 21:09
I know.

Kiona 21:10
Like right in the beginning being like, okay, I have this really bad headache. Blood pressure’s fine, but then they’re rushing around and cause they the way that they communicate with each other is different than how they communicate directly with you, Right? So they, they kind of know the level of importance of what’s going on. And then you’re just like, I’m going with the flow. But this is I don’t understand it. What’s happening?

Angela 21:31
Right. Exactly. And like, I could hear their tone and like their inflection when they were speaking to each other. it’s not that they didn’t communicate well with me. It’s that I think I was just so shocked, because, like I said, I had had no issues up until this point, and then they’re making it this big, huge issue. Later I found out that blood work was already not trending in the right direction at that point. I had heard of help syndrome only because I had been reading about pre-eclampsia so much but I didn’t know like the details. I had no idea how rare it was. I had no idea how serious it was and that it could be fatal. I was just truly like, okay, I’m going to be in the hospital for like a few months. It’s going to be fine.

Kiona 22:17
when did they tell you that you had help syndrome? Because at this point, were you just only aware that you had pre-eclampsia

Angela 22:23
That’s right.

Kiona 22:24
Tell me about when you found out that you had help syndrome?

Angela 22:27
they were doing labs every single day watching my platelets and my liver I at that point kind of knew they were watching it, but I also knew that they were trending up, but not dangerously high. And so the maternal fetal medicine doctor was like, this is looking like the beginning of help syndrome. And I was like, No way. So then I start reading about help syndrome, and then I get really scared. had several visitors. My husband went and got our dog to bring our dog to visit. Like I, they gave me a pass to leave the hospital building so I could go see the dog. I was kind of hanging out in the hospital. We would go for walks And my husband went and got like, a little tiny Christmas tree for my hospital room. we kind of like, started making ourselves at home. We figured we were going to be there for a while. And so let’s just make the best of it. So that’s what we were doing. He was so great during that time. I mean, like anything I needed, he would go get it. And it was just amazing. So to answer your question, one day before my official diagnosis is when I learned that I may be on that track all night that night, I never fell asleep. My husband stayed there, spent the night with me. and I was like, This is not happening like This cannot be happening. And the doctor came in, the same doctor because they round for a week at a time. So I was really lucky It felt really consistent and like she was really on top of my case and like I felt really safe in her care. But she walked in with several people behind her, She sat down at the foot of my bed and said, Angela, your liver enzymes have doubled overnight. They are now twice normal and the recommendation is delivery. And I was like, let’s not do that. Like, let’s just see what happens. Like could it go back down? Or what if it goes back down?Like let’s just. And she’s like, it’s not going to go back down and I was like, But can’t we just see like, can’t we just see what happens? Like maybe let’s wait one more day? Because she explained to me that, like each day that you stay pregnant at this stage of pregnancy, each day is about a week less. And then NICU I was like, I want to push it to the limit. I don’t care if I get sicker I feel fine. let me get to a point where my body is telling me this has to stop because again, so they come in and diagnosed me with help syndrome and I felt fine. I had no symptoms. you know, they say you could see spots. I saw spots one time that I had bent over in the shower at the hospital, and I thought it was from bending over. It probably wasn’t looking back, but my blood pressure was under control. I didn’t feel sick. I didn’t feel nauseous, none of that. didn’t have the upper right quadrant pain they say you could have with help syndrome. I was just completely shocked when she said they’re going to deliver him today. And so she came in and said that and my mom had just left. I had my husband call my mom back and she came right back. And then he called everyone else and they all came right away. This was about probably nine ish in the morning. And then Bennett was born about 415 that day.

Kiona 25:33
goodness, I can’t even think about the way that your brain has to process all of this because you’re feeling fine outside of the big headache that you had. And once your blood pressure was under control, you felt fine.

Angela 25:45
That’s right.

Kiona 25:46
So that is so interesting because there is a lot of kind of expectation with such a big diagnosis that you would be feeling all the things and just like

Angela 25:56
Right.

Kiona 25:56
feeling like crap and like, you know, lik not wanting to do it and being totally on board of having your baby right away in order to feel better. But you’re over here begging for just one more day.

Angela 26:08
Even hours. I just wanted. I wanted more hours. I wanted more. Because at that stage of pregnancy, You’r not guaranteed to bring your baby home.

Kiona 26:18
right.

Angela 26:18
So I was exactly 25 weeks. And of course, that whole week I was admitted, I had been Googling on my phone, like, what are the chances of this? What are the chances of that? Like, if I make it to 26 weeks, what are the chances? What about 27 weeks? You know, and so when you’re admitted into the anti partum floors, they set goals for you. And so my first goal was 25 weeks. And then my second goal was 26 weeks. And they were like ultimately 27 is when we start to feel a lot better. And it’s possible that you could get to 27. So I just like kept that hope that I would get there. so my, liver enzymes were twice normal and my platelets were dropping. they were not in a dangerous place yet, but they were dropping. And because of one of my previous surgeries, I knew before I even got pregnant that I would have to have a C-section. And so thankfully, I was like mentally prepared for it to be a surgery versus like labor. that was the only thing that wasn’t a surprise that day. I was really happy that my platelets were okay because if they get too low, then C-section becomes very, very dangerous and sometimes they have to put the birthing person to sleep, like put them under I will say I didn’t really care about that. I was I just wanted to stay pregnant for as many more minutes as I possibly could. So they told us he has to come out today. I begged for them to give me another day and they were like, No. I said, Can I like talk to another doctor again? I loved my doctor. I just wanted another opinion. So they sent another doctor in I asked the other maternal fetal medicine doctor and she kind of like walked in she like, looked out the window and she was like, The recommendations are very strict for this illness. What you’re hearing is correct. if your liver enzymes become twice normal, they have to take them out. And so as soon as she came in and told me that I knew I wouldn’t have a say. Another interesting thing that happened the day before Bennett was born is when you’re admitted that early in pregnancy they send the NICU team in to talk to you. And I will never forget this doctor. His name is Dr. Zimmerman. I want to say his name because you know how when you meet a doctor and you can just tell that they are so smart and they’re like on top of current research I could just tell he really knew the best thing and things to say to me. he told me about the NICU we did a NICU tour. I said, I need the numbers like I’m a scientist. Like, what are the chances of survival? What are the chances of this this and this major illness that affects premature babies? He wrote on a piece of paper, are all the numbers. And I think survival was 79%. And I said, okay, that’s almost 80. I feel okay about that. of course, I was devastated, but that’s a lot better than hearing, 40% or 20% So we talked about all of that. he explained what would happen to the baby after he was born. And he asked us, do you want us to resuscitate him? I was like, What do you mean? He was like, he’s not going to be able to breathe on his own when he’s born. Do you want us to resuscitate him and put him on the ventilator? Like he’s going to need a ventilator to stay alive? And I go, You mean like life support? And he’s like, Well, yeah. And I was like, Why are you asking me if I want you to save my baby? Of course I want you to save my baby. And he said, some people don’t want their child to suffer. Some people have religions that don’t allow certain interventions that premature babies require. And I was like, No, I want you to do everything that you can for him, And he was like, okay.

Kiona 30:01
Oh, man, I appreciate that you were very adamant about getting the numbers, though, I feel that having the numbers kind of gives you more of an idea of what you can expect. It takes away the generalization of the possibilities. It kind of puts them into smaller categories.

Angela 30:20
Yeah, that’s exactly how I saw it. And not every parent of a micro preemie wants to hear the numbers. A lot of them are like, I just want to blindly go in and either follow my faith or follow my gut or like, whatever. with my science background, I was like, I need the data. What is the data say? And now, since all of that happened, if the data says what I want it to say, I’m like, Let’s go with that. If it doesn’t, I’m like, Let’s throw it out.

Kiona 30:50
Yeah, for sure. Lived experience makes a huge difference on how situations are perceived to like and what you ask you, what you need and all of that stuff. So Let’s go ahead and dive into the actual birth of Bennett. So were you awake for his cesarean and what happened immediately? Postpartum?

Angela 31:07
Yes, I was awake. I. I’m going to tell you a secret that I’ve only told, my immediate family and my best friend and one other friend of mine who also is a parent to a micro preemie who is no longer with us.

I just had this overwhelming feeling of I don’t want this to happen. This cannot be happening. I don’t want it to happen. This is not happening. And by this point, we had my husband’s family members were there. My best friend was there. My mom and dad are divorced and both of them were there. my brother in law and his wife were there. I felt truly very supported and loved during this time. But it’s not often that you talk to somebody who says that the day their child was born is one of the worst days of their life. And this truly was horrible. there’s only one day worse than this day. they put me in a labor room. I’m sitting there waiting. Right. They told me about 9 a.m. that he had to be born that day. There was an emergency before Bennet’s birth. I heard the code over the intercom. So I think a baby was being born like as they were coming into the hospital And so that took precedence over us which. I was like, okay, it can’t be that emergent if it’s not an emergency. that taught me the difference between a crash C-section and an emergency C-section, like we call most C-sections emergent. They’re really not Mine was not truly an emergency. It just had to be done as soon as possible. So we were just waiting. A lot of my family members were in the room. showed you that picture of my dad comforting me. I was just crying. I didn’t want it to happen. I wanted him in my belly, like I knew he was safe there. I had no idea what would happen when he came out. And it felt like mourning, waiting to go to the operating room. it almost was the same feeling as a funeral in that it was very somber. people would come in like health care workers would come in and out, and they would speak to me very softly and very calmly. It was just so somber, which is the proper mood, I think. everyone was like taking turns, comforting me. And of course, like, the longer I’m waiting, the worse the anxiety is getting. And I just kept in my head. I’m like, I don’t I don’t want this happen. I don’t want this to happen. I don’t want this to happen. I remember them rolling me to the operating room. And I was by myself at that point because they do the spinal and then let the spouse come in. If there is or your support person or whatever. And so they did the spinal that was really uncomfortable. She was like pressing on the spine that was making me feel sick because I knew the reason that she was doing it was it’s hard to describe that. But she was trying to get that done. And there was a nurse standing in front of me you know, it was like hunched over the nurse I said, I don’t I don’t feel good. and she’s like, what do you what do you mean? I’m like, I think I’m going to pass out. An then I kind of like dry heaved. And then I passed out. when I woke up, the anesthesiologist, like, pops her head up. She’s like, Hi, what day is it? What year is it? Like, are you okay? And I was like, Yeah, I like what happened. They’re like, You passed out. during that time, they had gotten some stat labs on me and everything was fine. I think I just passed out from the emotional stress that I was under and thankfully my mom didn’t hear the code that was called. My mom’s a nurse, so she was there. They called an overhead code on me. And so they’re just standing there like, why can’t Nick go back there yet? What’s going on? What’s the problem? What’s taking so long? But they didn’t know. It’s because I passed out. So finally, like, I wake up and I’m like, this this is awful. You know, they like, strap you to the table shift the table around to make sure the numbing medicine is everywhere that it needs to be. They do like the scratching tests and the poking tests and stuff, all of that was fine. It took a little bit longer than normal, I think, but from what I heard, everything was okay. So my husband finally comes in there and then there’s a nurse like talking about the case. And I didn’t know that this is what happens. I found out later that this is normal. But she was like, okay, we have a 30 year old female. The fetus is, 25 weeks. Exactly. We’re going to do such and such type of C-section like how what you would see on like a medical TV show them talking about the surgical case that they’re about to do. But the person’s asleep. But I was awake I was just like, why is she talking about me? Like, I’m not right here. I am right here. Why is she talking about me like that? my husband’s like, right, behind me on my left side. between me and the isolate for the baby. And the secret that I want to tell you,

thi is hard for me to say, but before all of this, they had said, Do you want to see the baby or not? When we pull him out, do you want to see him? And I said, no, I don’t know a lot of people who would say no to that question. I was so scared of what I would see. there’s about a 5050 chance that they’re even going to be alive when they’re born at that gestation. And I didn’t want my one and only view of him for him to not be alive in that moment. So I said, I don’t want to see it. I don’t want to see. So they instead of using a clear cover, they used a blue drape don’t remember feeling any of the procedure or the surgery at all. there were two OB-GYNs there, and one of the doctors the one who actually got him out and said, Happy birthday, Bennett. And then I looked the other way because I knew they would cross this way. Like I just didn’t. I wanted nothing to do with any of that. They also said he’s not going to cry. He’s too young, he’s too small, his lungs are too premature. He’s not going to cry. So they had prepared me ahead of time that I would not hear a noise. He cried twice,

Kiona 37:09
hmm

Angela 37:10
and

Kiona 37:11
hmm

Angela 37:11
I was thrilled because that was like a really, really great sign that he cried. and it sounded like the smallest like almost like a kitten. Like

Kiona 37:21
hmm

Angela 37:21
it was like, oh, well, you know, like really high pitched, just two little short cries then they left. And my husband looked at me and he was like, What would you want me to do? I was like, Go, go with him. I’m fine. Go like, go. He left with him they like, stitch me back up. They took me back to that same labor room that I was in before while I recovered from the spinal. at this point it was dark outside. A lot of my family members had left, It was probably like 1:00 in the morning, a lactation consultant came in to my room and she said, Hi, I’m so-and-so with lactation. I was like, Oh my gosh, I’m so glad you’re here. And she was like, Oh, that’s a good sign. I said, Well, I know that breast milk is the best thing for micro preemies, and I like, I need all the help. I want to do this. The only thing I’m going to be able to do correctly in this pregnancy is how I feel at the time. this is the only thing my body might do, right? Let’s. Let’s do it. Let’s go all in. So she helped me get started she brought the hospital grade pump and everything and got me all situated with that. And was about 4:00 in the morning when I was allowed to go up to the NICU

Kiona 38:32
when you went up to the NICU did you have the same idea of kind of being worried about what you were going to see?

Angela 38:39
Yes, it was. Of course, I had only been in the NICU one time before this, during that tour. so They rolled me in there and then I got to the side of his isolette and the height of it, like I, I had to stand up to be able to see actually see him. And so one of his primary nurses. Her name is Meghan, Incredible nurse. She and Nick helped me to stand up so that I could look at him and I almost passed out again, my blood pressure bottomed out. thankfully they got me settled back into the wheelchair so I didn’t fall. But the whole time they wheeled me back from the NICU to my anti partum room, I was completely out of it. I couldn’t open my eyes, I couldn’t move. I could hear, but I couldn’t speak because I was like very, very close to passing out. I don’t even remember being wheeled from the nick back to the room. I remember them moving me from the wheelchair to the bed and they were like, Her pulse is really weak they were again, like talking about me. Like I wasn’t there because it was an urgent situation. And right after delivery is a very dangerous time for women with preeclampsia. And so they were just being really cautious about that, thankfully. But they got me fixed up probably within, 20 ish minutes. in terms of like being conscious and eyes open and stuff, before all of that happened, I did touch his foot with my pinky. When babies are born so early, nothing’s fully developed, but their skin, if you try to like, gently rub their leg or their arm or their foot or something like you would a term newborn, it feels like fiery nerves on an extremely pre-term baby. so they taught us you can’t rub the baby. You have to do like what’s called a hand hug. And so you like cup your hands around the baby and do very, very gentle pressure. But I was too scared to even do that. So I just took my pinky and touched it to the bottom of his foot. he was £1, five ounces. He was 11 inches long. He immediately was intubated I didn’t get to hold him for 33 days. He was too sick to unstable to even be touched. The day they let me hold him, they just felt sorry for me. They were like, he’s still very unstable, but we want you to be able to hold your baby. it was a bad time. But I will say the very next day I was really lucky because the very next day, my blood, work was all back to normal. My blood pressure was good. I didn’t have any other issues other than it dropping the very first time I saw him. that kind of helped me feel better about him being born that day because I was like, Oh yeah, the cure is delivery. Like we delivered him and now I’m better. I ended up wanting to talk to another maternal fetal medicine doctor because I was having a lot of second guessing and, like, feeling really guilty about the fact that he was born so early and all that he went through. He had a very complex, traumatic. NICU stay. So I did speak to a maternal fetal medicine doctor, a completely different one, different office, different everything to just kind of see if she thinks the right decision was made. And she did. She said, this is exactly why baby has to be born early. Like looking at your labs from that morning. she said you were probably 24 to 48 hours from a stroke, being unconscious, coma, like all of that, because the liver can rupture. still looking back, I’m like, this is crazy. I felt fine. You know, I felt totally fine. And it’s not typical. to feel fine when you’re so sick.

Kiona 42:09
Right.

Angela 42:10
So I was just really lucky that I felt okay physically to be able to deal with what we were dealing with emotionally, you know?

Kiona 42:19
Yeah. No. 100%. Yeah. That’s just. Gosh, I’m just listening to your story, and there’s just so much to process because there’s so many things that are hard.

Angela 42:30
Yeah,

Kiona 42:31
Like every single decision. And I’m not saying that people that don’t experience help or pre-eclampsia, that they don’t have hard decisions to make because they do.

Angela 42:39
they do,

Kiona 42:39
But I’m saying that this adds so many more layers to the hardship of the decisions, like

Angela 42:47
right?

Kiona 42:48
asking for statistics and getting those numbers because you knew that that was helpful for you. But then to hear him cry, even though they said he wasn’t going to cry like that, probably had to feel so good.

Angela 42:59
It felt so good. And then after this all kind of tell you my husband’s personality, which he’s very like I don’t know if you’ve ever heard of like a golden retriever husband.

Kiona 43:08
MM

Angela 43:09
he’s a golden retriever husband. Like, he’s like, Hello, I’m here. How can I help? How can I support? Can I make you laugh? Like, let’s do that. he told me later and he told the nurses, I didn’t know this when it was happening. But then it’s Apgar scores were six and eight as a 25 weeker.

Kiona 43:26
That’s really good.

Angela 43:27
That’s like unheard of. And so he knew that when he went down to meet the nurses that were admitting Bennett into the NBCU and he was like, did you hear about his APGAR scores? They were six and eight. Like, Yeah, like, look at my boy.

Kiona 43:43
Oh.

Angela 43:43
Just

Kiona 43:44
Mm

Angela 43:44
it was really sweet. And my mom, earlier in her career, she was the labor and delivery nurse, which is the only reason I knew what an Apgar score was. So I was really excited to hear those scores. And then, of course, I started researching micro preemies with higher APGAR scores. Like does that improve their chances? And it does a little. And so I was encouraged by that. I was able to receive the steroid injections. I’ve heard you’ve talked to some other moms about this on your podcast. It burns so bad. Why does it burn so bad? I don’t know. But

Kiona 44:18
Yeah. I

Angela 44:19
it

Kiona 44:19
don’t

Angela 44:20
really

Kiona 44:20
know. I’ve never

Angela 44:21
I

Kiona 44:21
had to do it, but I’ve just heard that it’s just so intense. Like, it’s like the worst shot that you could ever receive. that just makes me feel bad for anyone that has to get it.

Angela 44:31
it was nothing, in the scheme of things that we were dealing with, it wasn’t something I was complaining about, but I was like, Wow, this burns like. So I got two of those shots in enough time for them to like help Bennett. I was on Magnesium on and off that week that I was there, and a lot of women or birthing people have a lot of trouble with magnesium and I had none. I was just really lucky. I don’t know if I was ignoring symptoms or something, but a lot of women say that it’s very uncomfortable to be on magnesium drip. They just feel in general, very terrible. And I was totally fine. but the magnesium, I didn’t know. This also helps protect the unborn babies brain and stomach like GI tract. And so I was like, whatever, give it to me. I don’t care. Like, whatever’s going to help him, like, let’s do it. I think because of the magnesium, his brain was a little bit more protected. So it’s very common for babies born that early to have brain bleeds later, like that first week of life. And he didn’t. So we were really thankful for that. he started out doing really well. They call it the honeymoon period. And then kind of went downhill pretty quickly after that. But about his birthday, not about that. So

Kiona 45:47
it’s about all of it. And I actually would love for you to give us a little bit of a brief experience of what your NICU say was like. Like what are the points that stick out to you the most? And then I also want to touch on again briefly what your breastfeeding journey ended up being like.

Angela 46:02
yeah, yes, I would love to talk about that. So can I start with the breastfeeding part?

Kiona 46:07
Sure. Yeah.

Angela 46:08
Okay. So remember, I said like the lactation came in and she was happy that I was happy to see her. I don’t think that’s super often, you know, 1:00 in the morning after a very traumatic birth that the person’s like, Yes, get in here. Like, let’s hook it up, see what

Kiona 46:23
Right.

Angela 46:23
happens.

Kiona 46:23
Mm

Angela 46:25
So I was able to start like producing colostrum and I was like saving the little, you know, they give you like little teeny tiny vials at first for that. And what they do for premature babies is they swab it on the inside of their mouth because there’s been studies to show that swabbing mom’s milk colostrum inside baby’s mouth helps their intestines mature like, Hey, wake up, We’re about to do something here. so I was really happy to learn that he was able to get some milk like in his actual mouth because they, just put a feeding tube in through his mouth at first. I just like kept pumping around the clock and got like the little vials. And then those were full. And then I switched to the bigger size and then those were full. And I just like, kept going. I wasn’t an over producer or anything. I think it was just a normal amount. But I was really thrilled that my body was able to do that after what my body had been through. And, human breast milk, whether it’s mom’s milk or donor milk, is the best thing for early babies. And they made sure that I knew that. And I went into the Parenthood journey knowing that I wanted to try to breastfeed. And when he was born early, I said, okay, maybe not breastfeed, but at least going to pump as long as I can. so we rented a hospital grade pump. Just because I was used to it from being in the hospital and I didn’t want to, like, switch it up right away, especially considering how bad. Bennett needed it. So we, paid out of pocket for a hospital grade breast pump. We were really lucky to be able to do that. I think it was like $80 a month or something. It’s kind of a lot, but we did that for like a few months and I would set alarms and pump all the time. I was just always pumping and my husband was the best. He was so supportive I would like pump in the middle of the night and write him a note. Please watch this for me. And then like so that it’s dry in the morning. And he would he always did. at this time we lived in an apartment. We had to get deep freezer all the milk. I was so excited. And so then every time we went in, we would just bring like another big cooler of milk for Bennett.

Kiona 48:30
That’s awesome.

Angela 48:31
yeah, I did get to actually breastfeed him twice in the NICU the reason that I didn’t stick with actually breastfeeding is because by the time he was out of the woods and able to start learning how to breastfeed, it was the end of March 2020. And so we all know what was happening in the world at that time. There were restrictions on visitors, their original policy was that mom and dad can be at baby’s bedside any time 24 seven and grandparents, if the parents allow, grandparents can be there any time, 24 seven, even without a parent. But if there’s like a guest, a parent or grandparent has to be there. So the first thing that happened towards the end of the first week of March is they said, okay, no more visitors, only mom and dad. Then they said only one parent at a time, mom or dad. And then they said one parent only. And so my husband wasn’t allowed to go to the NICU for about a month until Bennett It was ready to, like, start doing the coming home things like the discharge planning. And that was the hardest thing about it for my husband was literally not being allowed to visit your child in intensive care. Terrible. But I was able to pump for eight months. And so lot of premature babies need some extra calorie supplementation. And so we had to do like I think it was 40% neo sure formula and 60% breast milk. And so because of that, the eight months that I pumped lasted him for a year. So I’m so happy about that. And he’s still got the intestine intestinal infection called necrotizing enterocolitis, which is when the lining of the intestine gets infected. It’s called NEC N. E. C and it’s a extremely devastating disease. About half the babies that get it don’t make it. during that time, they’re not allowed to eat anyway. So and they’re not allowed to get anything through the feeding tube at all. So I don’t know either way, but I am excited that I was able to do that correctly

Kiona 50:38
Yeah. No, I think that’s beautiful. Especially since, had mentioned earlier that it’s something that you felt it was one of the only things you could do, right? You know,

Angela 50:45
yes,

Kiona 50:45
like, it was one of the only things that you could kind of have control over and do your best and work your hardest. And you did it.

Angela 50:53
Exactly.

Kiona 50:54
You did it.

Angela 50:55
I did. And NICU nurses are so supportive of all of this. the couple, I think I tried to breastfeed twice and Bennett did fine both times. But it’s one of those like we weren’t allowed to spend the night at this NICU. You they don’t have enough room for parents to, sleep over. And so if I wasn’t there 24 seven, then I couldn’t practice breastfeeding like we couldn’t learn it together. And then that might delay him going home. And we were so scared about COVID that we were just like, Let’s get out of here. And so he ended up doing fine with the bottle. And I was like, It’s the same thing. Plus I have to supplement with Nia. Sure. Anyway, why am I going to delay Like leaving going home. Just to say that I’m breastfeeding. Like pumping is good for Bennett.

Kiona 51:41
And so how long was Ben in the nick you for? It sounds like he was in there for at least three months.

Angela 51:48
it was almost five months. It was 139 days. Who’s counting?

Kiona 51:53
Mm hmm. You are. And you should be. That is totally fine. And okay. I think that It’s important to remember the numbers because it plays a huge part.

Angela 52:01
Yeah,

Kiona 52:01
It plays a huge part in everything that goes on. So. You said he has this colon disease.

Angela 52:08
he did. it varies widely, but for Bennett’s case, he had an infection in the lining of his intestine. Right between. There’s like, a valve between the small and the large intestine. And his infection was right near that valve. So what happened was he was about six weeks old when he was diagnosed with medical NEC, meaning they didn’t need to do surgery. And so when a baby has a big bloated, dark, dusky colored belly, their labs are doing certain things. They’re having issues with breathing and oxygenation and stuff. They’re just like overall decompensating, getting worse and worse and worse. They did some X-rays and found out, okay, he has medical NEC, which means we don’t need to do surgery right now, but we need to stop his feeds and we need to give him all this I.V. medication. When a baby gets medical NEC, the intestines try to heal themselves, there’s some scar tissue remaining. And in Bennett’s case, that scar tissue ended up causing a blockage in his intestine. then he was vomiting, like probably, five ish weeks later, he started vomiting stool and bile. And they did some scans. Okay, we think this is a blockage. We need to do surgery. And he was about £4 when he had his first surgery. They do like a scar like from hip to hip. They open them up from hip to hip and check all the intestines, inch by inch to find the issue and they remove it. a lot of infants need a lot of intestine removed. But we were extremely lucky that Bennett only needed two centimeters of his intestine removed. So he doesn’t have any long term effects from having this disease. some kids end up with something called short bowel syndrome. doesn’t have any issues. We’re really thankful When they did that surgery, they did have to place an ostomy bag and ileostomy. So when he came home from the hospital, he had oxygen, a little bit of supplemental oxygen. And he had an ostomy bag.

Kiona 54:06
That was exactly what my question was going to be was if he needed an ostmony bag and if he relies on that till this day

Angela 54:13
They reversed it at about age one, think it was right after his first birthday. They reversed it and the only reason they didn’t do it sooner. A lot of times when babies have this surgery in the NICU, they reverse it before the baby goes home. But he had gotten so sick after this surgery that I wanted to wait until he was bigger and more stable to do another surgery. and thankfully, like the neonatologist and everybody agreed with us that that was the best thing to do is wait. But after his first surgery, they called it ARDS acute respiratory distress syndrome. And so his lungs just weren’t working at all. He was on 100% oxygen. His oxygen saturation was like in the seventies and low eighties for like about a week. that was the last time during his stay that they told us that he wouldn’t make it. They told us four times during the stay that he would not make it. And they were usually 1:00 in the morning phone calls. Get here now the first time they called us, he was about two weeks old. He had a hole in his lung, that pneumothorax. They said he won’t make it through the night. And he did. the second time was when he got NEC. And so as soon as you’re diagnosed with NEC, they do X-rays, like around the clock, like on the hour, trying to make sure that the intestines don’t perforate, to make sure there’s not a hole in the intestines. And so he didn’t. But then when the blockage happened, they did need to go in and do surgery. He had several instances of being very, very sick. But this was definitely the worst one. Like he was very, very unwell for about a week. we were at that time staying in the hospital on a different floor and an extra room. They had. Like we didn’t leave. and that happened to be the first week of March. And so I remember like laying in the, pull out bed in one of the rooms and my husband said there’s like this weird virus and like things are going to get closed down, like everything’s going to get locked down. I was like, What are you talking about? I don’t care. Like, what? come to find out,

Kiona 56:10
It was a big thing.

Angela 56:11
it was a big, big, huge deal. the graduation day actually really snuck up on us. the whole time. I was just hoping I mean, any make you say is traumatic and if you’re in there thinking about when you’re going to go home, that’s like not a good place to be feeling and thinking. So I just was like, okay, this is my life right now. My baby’s here in this hospital. When I go visit my baby, I get to spend time with him and then I go home and then I come back the next day. I only missed one day the whole time he was there. And that’s because when they did allow my husband back in, it was one parent at a time. So he went and spent the whole day there with Bennett I should send you that picture

Kiona 56:51
Yes. Absolutely

Angela 56:52
can just see the like relief in his eyes from

Kiona 56:55
Aww.

Angela 56:55
getting to see him after a month. So,

Kiona 56:58
Yeah, for sure.

Angela 56:59
yeah,

Kiona 57:00
Oh, my goodness. There’s so much more that I want to,

Angela 57:03
I,

Kiona 57:03
like, dive into and ask you about, but we’re, like, almost at times,

Angela 57:06
I

Kiona 57:06
so

Angela 57:06
know, I know.

Kiona 57:07
Let’s close this off on little bit of a higher note of

Angela 57:11
Yeah.

Kiona 57:11
asking, how old is Bennett now?

Angela 57:14
Bennett is four years old. Almost four and a half. He’s healthy. He has no lasting issues, which is also really a miracle. I mean, every single time we go to any follow up appointments or anything, the doctor always comes in and they’re like, This is not the kid I just read about in the chart. And I’m like, Yes, it is.

Kiona 57:34
Mm hmm. Sounds like he’s got some of that from his mama, you know?

Angela 57:39
My dad is a three time cancer survivor and he has a very strong will. And I think then it gets some of his strong will from my dad and maybe some hard headedness from me.

But yeah, he’s in trouble.

Kiona 57:55
Nice.

Angela 57:55
He’s we’re going to put him in soccer in the fall. he’s really funny. He’s very, very sweet, And the way that I’ve been working on healing from all of this is actually volunteer with a couple of different non-profits. One is called Hand to Hold, and they support NICU families, including bereavement support And I’m a volunteer, a peer mentor with them. And so if anyone has a preterm birth, they can go sign up for a free peer mentor. Then the peer mentor coordinator looks through the stories and kind of matches them based on similar gestational ages or similar diagnoses. And so then I can just like be a text away for another parent going through this and the other non-profit that I’m volunteering with is called Project NICU, they support NICU Families and Medical professionals in the NICU And so this year I was able to be an ambassador with them. And so what that means is that I get to collect donations like for care packages and monetary donations. So we would deliver care packages and graduation kits and stuff to the NICU and we’re supporting UNC hospital, of course. it’s been really healing to be able to support these families that are sitting where we once sat and are terrified. And the last time we delivered some care packages, I actually like got to go into the rooms and deliver the packages to the actual, family sitting there with their baby, it was amazing. And so I hope to be able to continue supporting UNC Hospital in some way. like I said, I can’t say enough about how supportive my family and friends have been and all of the health care professionals. I think we had five NICU nurses come to his fourth birthday party.

Kiona 59:41
Oh, that’s so cute.

Angela 59:43
it’s such a special bond that you form with your NICU nurses because they’re caring for your critically ill infant in a way that you don’t know how to care for them. especially because it was during COVID. So not only do we feel isolated because we’re the parents of a teeny tiny, itty bitty, very sick baby, but now I have these consistent people that I am allowed to see during COVID where I’m not allowed to see anybody. And so we looked forward to seeing not only Bennett, but also these people that became like our family during during lockdown. And like I said, we still talk to several of them. They’re amazing, amazing people.

Kiona 1:00:26
mm mm. I love that so much for you, because that just sounds, you know, like. That is absolutely, like, such a hard time. And to have people that you could be consistent with in seeing and talking to that also know the situation. They know all of it that you can talk about your real feelings, about how you’re feeling scared, or how you feeling worried or you know, all of the things. So I think that’s super, super great.

Angela 1:00:50
Yeah.

Kiona 1:00:51
I do want to close off our interview with just three final questions. One of the questions you actually just provided, which is great, which is the resources. Do you have any additional resource that I can share with my listeners on your behalf? Like, what is a resource that you would point to specifically? NICU Families. What was the biggest thing that you used while you were in the NICU?

Angela 1:01:11
Oh, gosh. I was just on Instagram. It was terrible. I was just searching hashtags for 24 weeker 25 weeker I ended up finding a family that documented their whole. NICU stay on YouTube. They’re like vloggers. And that helped a lot because similar to me, their baby is okay. Now. He’s a little older than Bennett, but he is also healthy and doing very well. so I would recommend handhold and project. NICU and the preeclampsia Foundation.

Kiona 1:01:41
my next question is, what is one piece of advice that you would give to all pregnant people to prepare for labor, birth and postpartum?

Angela 1:01:51
I think my biggest piece of advice is to learn as much as possible about any diagnosis that you’re given, and you more than likely will need to advocate for yourself. And if you know your baby is going to be born with some type of diagnosis, unfortunately, the way medicine is right now is we have to be our own advocates, especially if you’re a birthing person of color. Unfortunately, preeclampsia more frequently affects birth people of color, and sometimes there are women who have been ignored. It’s just something to, like I said, educate yourself on as much as possible and

Kiona 1:02:31
Yeah.

Angela 1:02:32
continue advocating for yourself. If if we hadn’t advocated for Bennett the way that we did, he would not be here. And that is another thing that’s like one of my goals for the rest of my life is to try to help moms, parents, families that are in the situation that I was in, in the NICU with a very ill infant learn everything that you possibly can. Because if we had just said, okay, when they said he’s not going to make it, he wouldn’t be here. And that’s like that’s hard to think about. All of the people who just accepted that information rather than challenged it. And I’m not saying the medical professionals were wrong. Like, that’s not it at all. It’s that mother’s intuition. Birthing person’s intuition matters a lot. And the day before he was born, in my head. For some reason I just kept repeating to myself, I am not meant to be a bereaved mother. I don’t know where that came from. Similar to when I said I’m going to have a baby in March and I knew it was a lie. This feeling just like came over me that like, he’s going to make it. He’s going to make it. Were there times where I was questioning that? Absolutely. But like, I couldn’t get past the fact that I had this big, strong feeling. And so I just want to say your intuition really matters when you’re becoming a parent

Kiona 1:03:47
Yeah, Absolutely. Absolutely. I love that so much. And I think that what you just said is super important is advocating for yourself is absolutely necessary. As a NICU parent. But even outside of, parents that are in the NICU, like, you have to advocate for yourself wherever you are in this birthing journey because it’s so real. I say this not to devalue the work that the providers are doing, but it is their job. and some people look at it as it just being a job versus looking at it as individual who is going through this process. advocating for yourself is 100% necessary.

Angela 1:04:22
Yes.

Kiona 1:04:24
I have one final question for you.

Angela 1:04:26
Okay.

Kiona 1:04:27
if you could describe your birth with one word, what would it be?

Angela 1:04:30
Traumatic.

Kiona 1:04:32
Mm

Angela 1:04:33
And the other thing I didn’t get to touch on is that it felt really barbaric.

Kiona 1:04:38
hmm.

Angela 1:04:38
I don’t know if any other people you’ve talked to on your podcasts have described a C-section feeling like that, but it felt like I’m going to cut you open and I’m going to rip away your baby who is safely nestled who

Kiona 1:04:50
Mm

Angela 1:04:50
you feel like is safely nestled. he’s not ready yet. He’s not big enough. This isn’t going to be a good time. it’s a very strange thing to have this event that normally people say, congratulations

Kiona 1:05:01
Right.

Angela 1:05:01
What do you say to someone whose baby was born so early? I’m not sure. I’m not even sure now other than what I say to the that I mentor is I’m right here. I’m listening. Like you can tell me whatever you want to tell me and It was a very strange series of events that day. And it’s like I said, one of the worst days of my life. The only worst day was when they told us he’s not going to get better after his surgery. When he was his, he wasn’t oxygenating. Well and all that. He they said he’s not going to get better. He’ll let us know when he’s ready is what they said. We had a big family meeting. One of my close friends came in and took notes for me so that I could pay attention to the meeting and I was just like, You’re wrong. I think something’s wrong with this. I think this is wrong. And so ultimately it comes down to like trusting intuition. Of course, using the information the providers are giving you, but also your intuition matters too.

Kiona 1:05:56
Right. Yeah. Gosh. Yeah. Oh, that’s so, so much. And we didn’t even get a chance to touch on your postpartum like, mood

Angela 1:06:06
Yeah

Kiona 1:06:07
and how that was. Is there a way that you can give us a brief

Angela 1:06:11
yeah,

Kiona 1:06:11
description of how that was for you?

Angela 1:06:13
yeah. It was very didn’t add this but before like when I, when they weren’t sure if I had preeclampsia or not, my blood pressure was like kind of high. They started me on some anxiety medicine thinking that like, oh, maybe you’re really anxious and that’s what’s causing your blood pressure to be kind of all over the place, especially when your labs aren’t matching up with like, you know, with that. And so I was already taking, like a low dose of Zoloft for anxiety I think they started me on that on week 23. So I was on it for two weeks by the time he was born. And I just I stayed on it. And when I went to my postpartum, My like very first postpartum appointment, they were like, well, like, how’s your mood? And I was like, how could I possibly be doing well if my child is upstairs on a ventilator, not breathing for himself? You know, I didn’t have anything outside of normal NICU parent anxiety. And I don’t know if that’s because of the medicine they had started me on or not, but I feel really grateful that for the most part, I was able to, like, keep a clear mind and just I’ll tell you, I just really focused on the pumping a lot, just

Kiona 1:07:29
hmm.

Angela 1:07:29
focused on that. And my husband allowed me to focus on that and we got through it one day. Sometimes it was one minute at a time.

Kiona 1:07:39
Angela, I you know, I wouldn’t even say it was luck because you fought for it the whole time.

Angela 1:07:46
Yeah

Kiona 1:07:47
You focused on what you felt was important, and you got through it, and I personally think that luck had nothing to do with it. It was all your drive and dedication and strong mothering that got you through it.

Angela 1:08:04
Thank You, And my husband’s he, he,

Kiona 1:08:07
And your husband, Nick, is a champion?

Angela 1:08:11
oh my gosh. He really is. And mental health of the husband matters to so

Kiona 1:08:15
Absolutely.

Angela 1:08:15
of the spouse and so he allowed me to kind of deal with it in real time to the point where when Bennett came home Nick was trying to process all of that at once. Whereas I had five almost five months to process it. And so coming home with Ben, it was the happiest time of my life. Nick doesn’t remember it. Like it’s blocked out in his head because that’s when he was processing everything that happened. that’s another reason I keep saying I’m so lucky is because he really if I had not had him exactly him as my partner, I like I’m not sure how it would have worked out. I could not have asked for better support from all of our family members, all of our friends. But he and I now are trauma bonded. We were we we were like, okay, we’re we’re trauma bonded. We’re stuck together forever.

Kiona 1:09:10
Which isn’t the case all the time.

Angela 1:09:13
it’s not like I said, that’s another I keep saying I feel lucky he kind of like deals with certain things with humor which is really what someone like me with like higher anxiety and like nervousness. That’s what I need. When right before they started the procedure to get Bennett like the cutting, to get Bennett out, he was like talking to me about the NFL like football. He was like

Kiona 1:09:33
hmm.

Angela 1:09:33
trying to take, you know, take my mind off

Kiona 1:09:35
Right.

Angela 1:09:35
of it. but he’s just he’s incredible. And I’m just I’m so happy that and I tell him this all the time. I’m like, If I had been married to anyone, but you wouldn’t have turned out so good. So well. So

Kiona 1:09:47
Yeah. And that’s why you guys chose each other.

Angela 1:09:49
yeah.

Kiona 1:09:51
Well, Angela, thank you so, so very much for sharing your story and journey of parenthood with me. It sounds like you have an absolutely beautiful family, and the pictures you sent me are so beautiful and touching. so if anybody listening wants to see any of the images that we’ve talked about today, guys can head over to birth as we know it. Podcast dot com Angela, again, thank you so much. I’m so excited that you were able to come on and I truly, truly appreciate you.

Angela 1:10:18
Thank you so much. I’m so, so happy to finally talk to you and meet you over video chat and thank you for what you do. It’s important work.

Outro 1:10:36
First thing I want to say is if you made it this far. Thank you so much for listening to Angela’s entire story. I know that it’s long and I know that it’s challenging to listen to, but it’s so important to hear everything because it is her truth and it’s what she experienced. And I think that it is so important to hear these details, even though they’re hard. The amazing thing about this story is that Angela pushed through with her husband by her side, and they fought hard and advocated extremely hard for their son, Bennett. Angela, you taught me so much in this episode. I learned so many things and I am so thankful and appreciative of you sharing your story. If anybody wants to look up any of the definitions of the terms that were used in this episode, you can head over to birthasweknowitpodcast.com/65.

And if you liked this episode, I would encourage you to listen to episode 33 with Jenny Joseph. She talks about her experience with endometriosis as well as being a midwife coming into the United States. I also want to say I do have a Patreon account and I would love some support. shout out to my current patrons again for the amazing headphones that I’m wearing right now. if you want to become a patron and support the production of this podcast, go to

birthasweknowitpodcast.com/support In our next episode, I had the opportunity to interview Kelli Tuttle and she talks about her three different experiences with birth. The first one was an adoption. Her second was IVF and their third was a surprise natural conception. So you’re not going to want to miss the details on that one either. All right, friends, talk to you soon. Bye for now.

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