Mom Jess recounts the birth story of her daughter Addy, from their planned pregnancy during the pandemic and her pregnancy being perfect until around 30 weeks. Jess tells about how she became more swollen and gained 22 lbs in 2 weeks, and one of her non-stress tests came back abnormal. They discovered that Addy had a severe case of hydrops, where there was a lot of fluid buildup in her body, and Jess also had developed Mirror Syndrome (mimics preeclampsia), where as Addy became sicker, so did Jess.
Jess and her husband Patrick decide on a Caesarean section, since Jess was getting so sick, so Addy was born on October 8, 2020. Addy was later diagnosed with hypoplastic left heart syndrome, where the left side of her heart stopped developing, as well as underdeveloped lungs, from either being too early or from the hydrops. Addelyn deteriorated within 8 hours of her birth and passed away peacefully, surrounded by her parents.
Watch here (YouTube):
Listen here (podcast):
Time Stamps:
00:00 Addelyn Renee
01:49 Introduction of Jess and Patrick
04:38 Pregnancy
08:28 Anatomy Scan
15:37 30-Week Appointment
24:29 Mirror Syndrome
30:50 C-section
41:58 Saying goodbye
49:58 Spending time with Addy after her passing
54:04 Discharge and home
01:03:51 Autopsy
You might appreciate these other episodes:
- Watch/listen to Jess’s advice episode of daughter Addelyn: Click here
- Watch/listen to Tiffany‘s birth episode of daughter Khyana’s: Click here
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Full Transcription:
C-Section Birth and Death of Our Baby Addelyn from Fetal Hydrops During COVID-19 Pandemic
Jess Hennessey 0:00
My daughter’s name is Addelyn Renee and we lovingly nicknamed her Addy. So Addy or Addelyn Renee.
Jess Hennessey 0:03
I, you know, remember so clearly about her is she actually has my dark hair, had my dark hair. I threw out my pregnancy expected her to come out with really light colored hair like my husband and I did as babies. He still has really light, lighter color hair, and she came out with really, really dark hair.That was not how I pictured her when I was pregnant and it was such a surprise to see that.
Jess Hennessey 0:19
Welcome to Still A Part of Us a place where moms and dads share the story of their child who was stillborn, or who died in infancy. I’m winter.
Lee 0:23
And I’m Lee, we are grateful you joined us today. Please know that this is a story of loss and has triggers.
Winter 0:27
Thanks to our loss parents who are willing to be vulnerable and share their children with us.
Lee 0:30
If you’re listening to this podcast, just know that on our YouTube channel, there are pictures and videos that are related to the stories that are being shared.
Winter 1:02
Subscribe and share it with a friend that might need it and tell them to subscribe. Why? Because people need to know that even though our babies are no longer with us, they’re still a part of us.
Winter 1:17
Thank you again so much for joining us here today on Still A Part of Us. We are excited to talk to Jess who is going to tell us a little bit more about her sweet daughter Addy. This is Still A Part of Us and here we are talking about our babies and infant loss and stillbirth. So please keep yourself protected. Once again. Thank you so much for being here today, Jess. Can you tell us a little bit about yourself? Who are you? What do you do on a day to day basis? Where are you guys? Where are you based out of?
Jess Hennessey 1:49
Yes. So I am an HR Manager. I have been working in HR for seven years. At the time when it was, you know, I was pregnant. When she was born I was an HR Manager. And still currently am and during the time of my pregnancy and her birth, I was actually living in the Vancouver Washington area. So right outside of the border of Portland. Then my husband and I recently relocated to Sacramento, California, in January of this year, actually. So she was born in Washington, in the Portland area. Now we are in California, which is where I grew up. So we came back home.
Winter 2:28
Gotcha. Okay, that makes sense. Do you guys you referred to we, so is that you and your husband?
Jess Hennessey 2:35
Yes. Yes. And now our 19 week old Golden Retriever puppy, Kelso.
Winter 2:39
Wonderful, wonderful. And what do you guys like to do? Just like hobbies, things that you like to do on a regular basis and in your free time.
Jess Hennessey 2:49
We are big advocates of getting outside as much as possible. So camping, hiking, especially during the last year of COVID were huge activities, anything outdoors,we could get our hands on. We also really enjoy TV shows together. So you know rewatching a lot of Gordon Ramsay shows.
Winter 3:04
Oh!
Jess Hennessey 3:06
Yeah. So a lot of cooking shows, and fun kind of like survivor Shows like, you know, Wilderness, Naked Afraid. Anything where people are putting themselves in crazy situations. They’re like, I could never do that.
Winter 3:18
I know, I couldn’t I always freak out when I was like, Oh, that’s making me anxious. I’d be dead, I think.
Jess Hennessey 3:26
Yeah. Then the last few months have just been really all about, you know, we recently moved and we bought our first home and we bought our first dog. So the last few months have been really just centered around, you know, building our new home and getting it to where we want it to be and hanging out with our new puppy and being close to family. Finally, for the first time in my adult life.
Winter 3:45
That’s great. I think that’s awesome. I think we’re gonna get a little bit more into your move as well. So I do want to touch on that in a little bit. Just a little bit of context for our listeners. Tell us how long ago was Addy born?
Jess Hennessey 4:02
Yeah, so she was born October 8 of 2020. She passed away October 10 of 2020. Today the day we’re filming this is exactly six months from the day that she passed away.
Winter 4:16
Yeah. So I think it was kind of fun to like let’s do this is a nice way to honor her. I really really liked that we chose this day for you so.
Jess Hennessey 4:24
Me too. I cannot think of a better way to put value, or continue to put value to her life, you know to celebrate such a turbulent time and coming out on the other side of it and being able to look back at the last six months.
Winter 4:37
Yeah, exactly. So were you guys planning on getting pregnant then with Addy was that part of the whole grand scheme of things for your family?
Jess Hennessey 4:48
Oh man, her pregnancy. It was so planned. It is not even. I mean it was so planned to the month. At the time that you know my husband and I had so much going on, you know. We were approaching 10 years together, we were approaching six years married. I always joked with him, I really wanted to be together with him for 10 years and kind of live our young adult life. Then I really wanted to get a master’s degree before we had children and started a family.
Jess Hennessey 5:14
So, I got pregnant with her, we found out April 1, 2020. We had been very meticulously planning getting pregnant. Doing the whole regimen, six months prior to pregnancy and getting our bodies in good shape and good health. I actually graduated with my Master’s in August of 2020. I was almost six months pregnant. So we had planned it to be like, Oh, yes, I’ll you know, get my, finish my degree while I’m pregnant. Let’s do it, and then we’ll be in tandem with what our plans were. So yeah, she was very much, we set a month. And we said, This is when it’s happening, and we felt very lucky that it did. It happened almost immediately for us.
Winter 5:54
That is awesome. That is impressive, Jess, it sounds like you guys are very like we’ve got our stuff together.
Jess Hennessey 6:01
I would absolutely say I am very much a planner. My husband is more let’s go with the flow. Let’s see what life throws at us which in this case, he was obviously very thankful that like you planned this really well. I’m like, thank you.
Winter 6:15
Yes, I did plan that very well, didn’t I?
Jess Hennessey 6:19
Yeah, she was very much planned and very much wanted.
Jess Hennessey 6:22
Oh, that is wonderful. So how did your pregnancy go? Was it fairly easy? I mean, you were six– you graduated in August. I’m like, can you– I’m just thinking I’m like, oh, if I was pregnant while I was going to school, that would have been rough. So how was your pregnancy?
Jess Hennessey 6:40
You know, I knew what I was getting into, towards the tail end of school. And of course, we found out we were pregnant, just as stay at home shelters were put into place. So she was actually conceived prior to the kind of shelter in place happening. We didn’t really know how big COVID was gonna get. So in my mind, I mean, there were so many other obstacles that happened in my pregnancy, but I felt very thankful I was healthy. I had a very easygoing pregnancy. I think I experienced some, you know, first trimester symptoms, a little bit of nausea, exhaustion, and headaches, but nothing that didn’t stop me from working full time. I worked full time, even though it was in remote capacity because of COVID. I went to school full time, and that all became online. I actually felt like I was so thankful, like, wow. COVID and what happened what’s still happening is awful. But I got to be pregnant at home. Basically, I’m like, I couldn’t have planned this better. And this wasn’t even my plan.
Winter 7:34
Yeah, that’s a little bit of a silver lining, isn’t it? I just–
Jess Hennessey 7:38
Yeah!
Winter 7:39
It’s kind of as awful as the pandemic has been. There’s definitely some silver lining to that. So that’s good. I’m glad to hear that your pregnancy wasn’t too awful.
Jess Hennessey 7:49
No! You know, I was active. I went on walks almost every day. And yeah, I had no hiccups in my pregnancy whatsoever.
Winter 7:58
That’s awesome. So when you guys hit, like, how were your doctor’s appointments? Were you looking good? Was Addy looking good?
Jess Hennessey 8:06
Everything was normal. My doctors– during COVID, I went to not everything alone, they let my husband and for a lot of big milestone appointments. But–
Winter 8:19
That’s good, because I know that there were a lot of people that did this alone. And that is crummy. So I’m glad that he was there for some of those appointments. Great.
Jess Hennessey 8:28
Yes, he got to be there for the anatomy scan, we actually had two anatomy scans. Just because of some imaging that they could not see. Then we were able to see, but outside of that every appointment was very normal. I was growing and gaining weight appropriately. She was growing and gaining what she needed to do. And I felt good. I loved being pregnant. Everyone just thought I was just beaming. I just loved it. It was one of the best times in my life.
Winter 8:56
Oh, that’s so good to hear. You’re one of those pregnancy unicorns. Did you know that? That’s what it sounds like.
Jess Hennessey 9:04
It was just it was– I mean, it was just incredible. I couldn’t have imagined when I had put this plan in forth for me and my husband and what our life would look like. I just, I couldn’t have imagined how wonderful it truly would be right? You can’t plan how incredible it’s going to feel to have a baby kick inside of you, or to be so empowered to finish.
Jess Hennessey 9:26
I remember giving my final speech for my master’s program in front of a large audience on zoom, which was not how it’s supposed to be. But she was kicking inside me as I was giving this final you know, I mean, those are just things. It was incredible. And I loved every minute of it.
Winter 9:40
Oh, that’s so great. That’s so great. So you guys did go and do the anatomy scan at 20 weeks isn’t? Well, yeah, at 20 weeks, probably around there. Did you guys plan on finding out if it was a girl or a boy?
Jess Hennessey 9:54
Yes, we did. We actually found out with the first genetic testing blood work. She was 10 weeks old at that point.
Jess Hennessey 10:02
Oh okay,!
Jess Hennessey 10:03
We did all the genetic testing the first trimester. We actually held the results until the Fourth of July weekend because we wanted to be surprised with my whole family. She was the first grandbaby across the whole board.
Jess Hennessey 10:16
Are you serious? Oh.
Jess Hennessey 10:18
Yeah. So my in-laws, and my dad, my mom has actually passed away. So my dad like she was the first grandbaby in the whole family. We wanted to be surprised together that she was a girl. I genuinely thought she was a boy. So when I found out at 17 weeks that it was a girl, I was shocked. I was like, there is no way. I just always pictured her being a boy. So yeah, we had the genetic testing done for blood work. Then we were able to find out a little bit earlier than the anatomy scan, but we actually had two anatomy scans, one at 18 weeks and one at 22 weeks.
Winter 10:52
Okay. And those looked good. And I was gonna ask, did the genetic test, how did that look?
Jess Hennessey 10:59
Fine, everything was great. They didn’t see any chromosomal issues. Everything looked good. Same with the anatomy scans. We went for my first one at 18 weeks. They were able to get good imaging, except for they wanted a little bit more of her brain and a little bit of her heart. She just would not position correctly. It was not a big deal. They were like she’s really stubborn. So we’re just gonna come back in a couple weeks, and we’ll get those images.
Jess Hennessey 11:27
So we felt lucky, because we’re like, great, we get to see her twice, then almost a month later, we got to have basically a repeat. An hour with our baby seeing her. They got all the scans that they needed of her brain and her heart. There was no concern after that. That was at 22 weeks.
Winter 11:45
Okay. That’s great. It’s always kind of reassuring to have those kinds of time points. But I love the fact that you guys were able to get to see her twice, in a sense, right? I mean, you get to see her on the ultrasound, which is always I think it’s a special treat, actually.
Winter 12:01
Okay, so you’re, you’re going along, and you have defended your masters. I don’t know if that’s defended your masters, but you did your final presentation for your masters, and everything’s going really well. Can you tell me a little bit more of what happened then?
Jess Hennessey 12:16
Yeah, absolutely. So in terms of timeline, so I finished up my master’s degree in August, I actually came back to California for my baby shower. We had a really small get together. But this is where my family is from. We were able to make it happen even during COVID. It was everyone again, she was the first baby in the family. So everyone just really wanted to celebrate her.
Jess Hennessey 12:38
So at 28 weeks, I actually came home at the time we were building our house. So we had purchased a house in early June after we found out we got pregnant. It was a new build, so I actually was able to come into the house with my mother in law, my dad, and my sister. We looked at the house, it was now about halfway being built. I’m you know, being pregnant, and we got pictures of me in the front door that was incomplete. It was so fun.
Jess Hennessey 13:04
I had my baby shower in late September. Then I got home and at that point, so I would say very late September to early October, I definitely started feeling pretty significant third trimester symptoms. I became really swollen, a lot of pelvic pressure, a lot of back pain. At this point, I’d had no kind of concerns in my pregnancy.
Jess Hennessey 13:31
She wasn’t moving as much as normal. Which again, I know my doctor, she explained to me that hey, you know, things are gonna move a little bit differently in the third trimester. They’re a lot bigger, they’re not gonna have as much room. I’m 5’1. She started like, you don’t have a lot of capacity to begin with. So it wasn’t in my mind a big concern, but a little bit of decreased fetal movement, just not as you know. jabby kicking and still very active after eating so she would still move around with sugar and things like that.
Jess Hennessey 13:56
But yeah, I just started just getting really swollen and tired even more. I knew that was in my mind, at least, you know, that’s the third trimester. Right? Everyone says the third trimester, you get really tough, right? You’re past that glowing second trimester, and your body’s preparing for the birth. So I just attributed all of those things to I’m going into my third trimester.
Jess Hennessey 14:19
I remember trying to stretch at night and every night my thighs were more and more swollen. I couldn’t stretch as far as I remember telling my husband, you know, getting really uncomfortable. So I had seen my obgyn at 28 weeks right after my baby shower.
Winter 14:37
In person? Was it in person?
Jess Hennessey 14:38
In person.
Winter 14:39
Okay.
Jess Hennessey 14:39
Yup in person. I addressed the concerns of being a little bit more swollen. She actually had said that my belly was measuring a little bit bigger at that point, but nothing that gave her concern. I mean, even at my baby shower is still one of the things that’s difficult for me to hear. But it’s true is you know, some of my family and friends and they said this out of complete love. They’re like, wow, you’re really, really big for being 28 weeks. I had been so normal sized. And I mean, I’m like, Yeah. I mean, maybe she’s just really growing and she’s got long legs that we know of.
Jess Hennessey 15:10
So I definitely was getting bigger very quickly. And it was not a normal speed, essentially. And I was getting uncomfortable. So my obgyn just said, Look, at this point, I don’t have any concerns. You’re still walking, you know, we’re not really seeing any symptoms of potential concern for you at this point, or her. So we’ll just keep going through the program. And if things change, let us know. At that point, I started seeing my obgyn, it was on a two week schedule.
Jess Hennessey 15:37
So I saw her again, for a normal, just a normal appointment. That morning of my appointment, it was just a normal appointment. I remember feeling something was wrong, and I couldn’t pinpoint it. I did not think it was what had, I didn’t think it was as extreme as it was. We found out what’s going on. I just figured something was a little off.
Jess Hennessey 16:01
The night before I actually she was moving, but not as much. Actually my husband and I took out our doppler and we listened to her heart and everything sounded fine. She was moving just not as much I couldn’t pinpoint it.
Jess Hennessey 16:13
So I went into my obgyn that morning, the morning she was born, which was October 8, for a normal appointment, it was my 30, about 30 week checkup. I was 30 weeks and three days at that point. I just was feeling uncomfortable. I got on the scale, and I gained 22 pounds in two weeks. I knew something was very, very wrong.
Jess Hennessey 16:33
I was not one of those, you know, for me, I did not weigh myself frequently, when I was pregnant. I really wanted to let my body do its job. My obgyn agreed to that, because I was not, you know, I wasn’t gaining weight at a rapid–, you know, it was very normal, essentially. So she had no concerns with me just getting weighed at my appointments, we didn’t see a concern with that. So I knew something was very wrong at that point.
Jess Hennessey 16:58
I knew I’d been feeling more uncomfortable and clothes weren’t fitting like normal. Again, I just thought maybe the third trimester. But she was okay, she was moving, her heartbeat was beating. So I got back into the exam room and I just at that point, lost it and just broke down. You know, my obgyn came in and said, You know, that’s a lot of weight to gain in a short period of time, it’s obviously fluid. So we need to have a closer look at the baby and you.
Jess Hennessey 17:23
So we got her on a stress test. I am so grateful I actually recorded that thinking, I’m going to go home tonight and be able to share this video with my family. I did not know what was about to happen. I just didn’t know. I got a video of me and my big belly and the stress test on and I’m you know listening to her heartbeat. I remember thinking in that moment, like she’s okay, that’s what mattered, right? She’s okay, she’s here heart’s beating, she’s wiggling. But I still have that sense that something was wrong.
Jess Hennessey 17:53
So after the stress test, my obgyn looked at the results. And you know, I could see her face looking at that piece of paper, and I knew I could just sense something was a little bit more serious than we thought. She said, “Well we’re seeing some normal rhythm, but we’re seeing quite a few not normal rhythms. I listen back to the video, I hear it now. There were drops in her heartbeat.
Winter 18:17
Oh.
Jess Hennessey 18:18
Yeah. So we decided that it was time to get an ultrasound. So they decided to admit me into the OBGYN floor, or the birth center floor. Which was on the fifth level of my hospital. We had actually never been up there. It was like this kind of coveted you only go up there when you’re in labor, active labor. It was a brand new floor. I asked my obgyn if I should call my husband. She knew my husband, Patrick. She’s like, yes, you should call Patrick. He was at work. And again, it had just been a normal appointment. I was used to doing that.
Jess Hennessey 18:48
So I called Patrick and I said, you need to get over here. And I don’t know how long we’re going to be. So we met in the lobby, and we went up to the fifth floor together. I called my boss and I had some scheduled interviews that day. I just said, I’m so sorry, you need to take my calendar and I just don’t know what today is going to look like. But I should be home tonight. I remember just thinking in my head telling my family and my employer, I’m going to be home tonight. We’ll talk about it then we’ll figure out what I missed. I’m so sorry. You know, putting on the career woman part of me.
Jess Hennessey 19:18
We headed to the fifth floor and got admitted. They immediately started me on some IV’s which I’ve never had it before. It took like six or seven pokes in different spots on my hands. I just remember thinking like, Oh my gosh, I mean, it’s fine. This is the worst of today, which absolutely was not the worst day of being poked at least. But I finally got a couple IV’s in and they started me on fluids. Then the ultrasound tech came in and she spent probably I would say about 30 minutes on ultrasound and it was very quiet. Which had not been the previous experiences during my anatomy scan. She was just very quiet and could go after–
Winter 19:59
Could you see the ultrasound while she was doing it?
Jess Hennessey 20:02
You know what if I, my husband remembers it perfectly. I actually think at this point, I was starting to block out some of this, I knew something was wrong. I was getting that feeling. I remember looking at my husband more than the computer screen. I just, I don’t know, I didn’t know what I was supposed to be looking for. But I knew something was wrong.
Jess Hennessey 20:26
I guess the last ultrasound I’d had, she was 22 weeks and she was perfect. Right? That was the last time I saw her.
Winter 20:31
Right.
Jess Hennessey 20:31
It was the joyous moment. I just didn’t want to take away from that. So I remember, just almost trying to not look at the screen. It was fully visible if we wanted to look at it. I didn’t know what we were looking at. Then I remember at the end of the ultrasound, the tech said, Hey, you know, I want to show you guys something, and she was putting on you could tell, she was trying her very best to put on a smile for us. And she said, I want to show you her spine and her legs and her arms. She just said, I just really want you to look at this. I just and at the time, I didn’t know. And we’re like Okay, thanks.
Jess Hennessey 21:07
I didn’t realize she was trying to show us probably the last time we’d see her on the screen, at least in this form. She was trying to make that part of it at least still somewhat positive, which I appreciate so much. I’m so grateful she did that because then I looked and there was my Addy. She was perfect, right.
Jess Hennessey 21:27
I still, you know, couldn’t tell what was going on. I just thought, you know, she was kind of moving. I could feel her with the ultrasound, she didn’t really like being probed. She would move around with it. And I’m like, Okay, and so then, at that point, everyone kind of left the room and my husband actually called my sister, who is a nurse. She is not an OB, she doesn’t work with an OBGYN directly. She knows about the time that most nurses have during nursing school for, you know, birthing and care of infants. My husband called her and just said, Hey, like, this is what’s going on. I remember my sister saying if they give her magnesium, something is seriously wrong. Just you need to call me immediately because at that point, they had just been giving me fluids. So if they give her magnesium, something is wrong.
Jess Hennessey 22:20
So I kid you not two minutes later, in comes a nurse with magnesium shot. I said what’s going on, and they’re like, your doctor is gonna come in, and they’re gonna let you know. I’m like, okay, and I didn’t realize it, but magnesium at the time, but magnesium is to help the baby’s brain develop more quickly. They gave me a steroid shot as well. That’s supposed to help with their lungs for premature birth. So that’s why my sister had said, they’re giving her magnesium. I don’t remember if she had said steroids, but she just said then something is gonna happen. Something’s wrong.
Jess Hennessey 22:59
So my obgyn about 10 minutes later came in and she sat on my bed and she took my hand and she said, Addy has something called hydrops. I said, What is that? And she said, there’s quite a bit of fluid buildup inside of her. It’s pretty significant. It’s around her vital organs, including her lungs, her heart. It’s around her brain. She actually pulled up the ultrasound and showed us kind of the rim of her head specifically, I remember that. She said there’s about a two centimeter gap basically, between where her skin line and her skull. She said, That’s fluid. That’s not supposed to be there.
Jess Hennessey 23:44
I just remember being like, oh, and then she said the other thing. So Addy has hydrops. She’s, it’s very severe. We need to get her out. And I just said what I said she’s 30 weeks. I just remember at this point, almost like going into that, like fight or flight. Like what? My obgyn had two premature, beautiful baby boys. That’s partly why we connected and they were premature. I mean, she had twins and I really liked that about her. So that’s why I chose her as my ob. I just thought you’ve got this experience. You’re a mom of two boys that had twins. She said, you know, my boys were born at 30 weeks. She kept grabbing my hand and she started to cry, which I know as a doctor.
Jess Hennessey 24:29
She knew what was coming and she knew what I mean she must have known at that point. But of course, my hospital was a small local hospital not equipped to take care of and NICU baby in this capacity. So at that point, she said the other thing that’s going on is that you have something called Mirror Syndrome, which happens to about 50% of cases with babies with hydrops. It is when the mom is essentially getting sicker the sicker the baby gets.
Jess Hennessey 25:00
She said at this point, have you felt any type of tightening in your belly over the last week? And I said, Well, yeah, I mean, but I thought that was Braxton Hicks. Right? I’m in my third trimester. That’s normal, right? And she said, “No, I think your body’s been in labor for about a week. It’s in complete distress right now. You’re dying, if we don’t get her out, mirror syndrome is very serious. It’s basically mimicking preeclampsia.” And even though I didn’t have some of the other preeclampsia symptoms, like headache, and you know, my blood pressure at this point was okay, I was getting incredibly swollen. She said, “We need to get her out.” They said, “We can’t perform care for her here.” We’re going to send you to basically OHSU, which is the major hospital in Portland. They have a fantastic NICU unit.
Jess Hennessey 25:51
We said, okay, and she’s like, the ambulance is going to be here in five minutes to come get you and you have to go. I’m like, Patrick can’t drive me and she’s like, no, you’re you’re in critical condition as well. I’m like, Oh, okay. I remember at that moment, you know, looking at Patrick, and I said, How long are we going to be there? I asked my doctor, and she’s like, I don’t know. She didn’t have a lot of answers. I asked if the baby, for sure was coming tonight. She’s like, I don’t know, I asked if it would be a C section. She said, I don’t know. So I looked at my husband and said, I just remember blurting off, like, we’re gonna need our pillows, and I need you to feed the cat. I need you to pack me a couple of sweatpants. And you know, we didn’t have our hospital bags together and like, we’re 30 weeks pregnant, we didn’t have our plan in place at this point for being such a planner.
Winter 26:38
So they were just going to transfer you there? Then hand you over to I’m assuming maternal fetal medicine, or some the basically the doctors, they’re the team of doctors at OHSU?
Jess Hennessey 26:50
Yes, exactly. They said, at that point, they’re going to reassess me and Addy, and then they’ll be able to put a plan of care for me together based on what they also come up with, and some of the resources that they had there.
Winter 27:04
Yeah, yeah. Okay.
Jess Hennessey 27:08
So after that, I had to pee, of course, because when you know you pee all the time when you’re pregnant. So I went finally, for the first time in this whole event. I finally had a minute to myself and my husband came into the bathroom, and he was crying. I said, What’s going on? I said, we’re going to be okay. I said, you know, this is not the plan. But you know, we’re going to get her out. It sounds like there’s gonna be a plan in place, and we’re going to care for her and we’re going to the right place. And he said, I googled hydrops, Jess and it’s not good. He said, we’re going to need a miracle.
Jess Hennessey 27:40
I think at that moment, I knew, I think I knew that it switched in my mind from you know, she’s really sick. And I’m really sick. But it’s, you know, we live in 2020. There’s a lot of resources available to care for sick babies. I realized that this was a lot bigger than just that.
Jess Hennessey 28:03
Then we got transferred to OHSU, where they got me set up. My poor husband had to deal with multiple cars and his work and trying to manage getting the house together. He did such a great job. And I’m over there, getting examined some more so they have their own team. So we had about a team of six people pretty immediately taking care of me and Addy. So during our ultrasounds, they had the echo cardiologist for her to take a look at her heart primarily and some of her other organs had two doctors at that point. It all happened so quickly.
Jess Hennessey 28:42
They had two Fetal Medicine specialists come in after everything and say, you know, at this point, I think you really have three options and they said it doesn’t look good as of right now. So we need to move quickly. Option A is we can continue monitoring you and her things are moving very quickly and pretty significantly and at that point, they were actually able to measure that fluid buildup was increasing even inside me from the time I left my normal local hospital. to OHSU you could already tell that more fluid is building up. So they’re like this isn’t getting, it’s not getting any better.
Jess Hennessey 29:24
But we can continue to monitor and they also recommended at that point we would go in with my gosh, what are the needles called? It’s blanking– With a–
Winter 29:35
Epidural?
Jess Hennessey 29:37
Pericardiocentesis.
Jess Hennessey 29:40
I see what you’re saying.
Jess Hennessey 29:43
Yeah, to basically start draining her fluid and some of the fluid surrounding her in my stomach. And around the placenta, to try to provide some relief. They said, you know, she’s continuing to have buildup of fluid so, that would be a short term fix. They also said we could induce you. I was at that point just in active labor, but distressed labor. So even though my body was in distress, there was no movement in terms of dilation, or effacement. So she, it would be, you know, let’s reduce her, and then we could get her out. But it could be anywhere from 24 to 48 hours. They said your health is incredibly declining very quickly. So they said, those are two options, but we don’t recommend them.
Jess Hennessey 30:28
And I said, I understand why they said she’s going to pass away probably anyway, tonight, if we don’t get her out. So they said, The other option would be an emergency c-section. They said, that’s what we would recommend, we could get you ready for surgery and get her out. Then you can begin your recovery, and we can get you stabilized. Then we can assess her on the outside, because there were still limitations with, you know, the scans. They, at this point, had suspected potentially something could have been wrong with some of her other organs .
Jess Hennessey 31:02
So her heart, they couldn’t get a full visual. But while she, while we got some scans, you know, there were some concerns with her heart growth and prolonged development. They said at least we could assess her on the outside. It was without a question that that’s what we needed to do. And I said, get me ready for surgery.
Jess Hennessey 31:19
When I thought about getting pregnant, I absolutely knew that C-sections are a life saving surgery, and in my mind, I’m like, I just will never have that. Like it just never crossed my mind, even though it was always possible. I’ve never been in any type of major surgery before. And so I’m like, we’re doing this.
Jess Hennessey 31:43
My husband is updating our family. I didn’t even know where my cell phone was, at this point. I hadn’t looked at anything, which sounds so silly, like in the, in the moment, I just remember feeling so discombobulated and not oriented. At this point, I hadn’t eaten anything in the morning, since my first cup of coffee that morning, because my OBGYN kind of knew what was coming. She’s like, no more food and more liquids. I mean, she probably anticipated the C-section, so I was hungry. So all of those things. And I just didn’t feel ready to meet my daughter. I was like this is happening very quickly. It happened in a matter of six hours. She was born within eight hours after my appointment.
Jess Hennessey 32:25
So they prepped me for surgery. I went back and I mean, I think a C-section if it wasn’t something that we were ready for mentally it was something Patrick and I we hadn’t discussed or what that looked like, I don’t even think he understood really what a C section was. I mean, we were still finishing our birth classes. Right. So yeah,
Winter 32:47
Yeah.
Jess Hennessey 32:49
So he didn’t know and he remembers the sounds very vividly. But we got her out. I remember them holding her up in front of me and looking at her for the first time. She was perfect, but she was so sick. Her ears were so swollen. A little face. I mean, she looked like a newborn baby. She did not look like she was 30 weeks. She had 10 perfect toes and 10 perfect fingers. They told me she’s a big kid. And we all kind of joke in my pregnancy. She had longer legs, but she looked like a full size baby because of all the fluid right?
Winter 33:39
Yeah.
Jess Hennessey 33:41
They immediately took her way. I remember Patrick asking me, what do you want me to do? I’m like, go with her. Like, go and he said okay, and he followed them into the NICU when they started. I know she was breathing, but not very well. So they were doing some resuscitation with her.
Jess Hennessey 34:03
Then they were working on me. I remember the doctor, the surgeon, she was so wonderful. After everything was done and I was of course very loopy, disoriented and in shock. I was shaking and she put the curtain down and she’s like, I want you to know, I did a standard bikini cut basically. I said okay, she’s like, it means that you’re likely going to have healthy pregnancies and potential vbacs in the future. I just remember her saying that because this whole team of doctors they all knew what was going to happen. They all knew and they just were all trying to give me comfort in their own way. I remember being so appreciative.
Jess Hennessey 34:38
So yeah she was in the NICU and they got me. They got me into the postop room and Patrick was able to come visit while I was still waking up from surgery and kind of getting myself oriented. He would be bouncing back and forth between the NICU room and coming to see me. I mean the next 20-26 hours. It’s something yeah. It was really difficult. It was having a lot of people coming in and out to check on me at that point. Thankfully, after I gave birth, I became more stabilized. Because I think in this whole scheme of things, you know, Addy was very sick. We knew, I mean, I think at this point, there’s a pretty well rounded decision that she needed to get out, and she was probably going to pass away, but we’re at least going to give her a fighting chance.
Jess Hennessey 35:39
Based on statistics, and the doctors, you know, telling me it was less than a 5% chance of how severe her hydro drops were. Then if there were other concerns on top of that, which there was that we found out, she was born and assessing her. I mean, it was just very, very slim. Even if it was any type of chance to get through these hurdles, her quality of life would be very, very poor. She would likely never, ever be able to walk. We didn’t know her brain functionality. I know she knew who I was.
Jess Hennessey 36:15
I got to meet her about two hours after she was born. Officially meet her. She was in one of those little NICU beds with the heating lamps and they took it off for me to see her. I remember putting my hand right next to her fingers. And at this point, she was not sedated. So they resuscitated her but she was not sedated. So I was able to still, you know, she was still wiggling a little bit. I remember putting my finger right by her hand and saying, Hi, Addy. She just squeezed it. It was the most magical moment. She knew exactly who I was. You know, they spend how many months in your belly listening to you. As an HR manager, I did. I cannot even tell you how many phone interviews and conversations I would have and over zoom, and she was right there for it all. She was my little buddy in quarantine. Being alone and pregnant for the first time. I always had her. So yeah that was really the last time I saw her up until she passed away.
Jess Hennessey 36:16
There were some steps in place, which I don’t— I have no ill will towards the hospital. They were incredible. I still am very close with some of the nurses who took care of me and were there for me. But I was trying to get through having a C-Section A major surgery. They wanted me to walk and they needed me to go to the bathroom and things like that. As soon as I could hit some of these milestones, I could go see her again. My husband was able to go see her as often as he wanted. So he’d often bounce back and forth.
Jess Hennessey 37:50
Then they moved us from you know, we were in the mother’s quarters. When we first got kind of wheeled into our room for the night. All I heard was the crying babies and I said I can’t be here. They were able to move me. So I got this kind of private quarters in the hospital, which still is very quiet. That night, it was just a lot of monitoring me because I was trying to get stabilized and Patrick going back and forth between visiting me and Addy. She was breathing at that point. They don’t like to put a couple chest tubes in. We didn’t know the extent to what else was going on. Besides they were trying to drain fluid at this point.
Jess Hennessey 38:29
Then the next day, which was the 9th. The next morning, I woke up to my sister who flew in, she lives in California, but she actually was on vacation in Boston at this point. So that was another whole— Yeah. Because again, we had planned everything, you know, up until we thought her due date, really. So she had planned this trip. I woke up to my sister in the hospital room. I just remember saying how are you here? We’re in COVID.
Winter 38:59
How did they get you in?
Jess Hennessey 39:02
My sister and I were very close. She’s a year and a half younger than I am. Which does not matter. But she’s a little bit younger than me. Our mom passed away three years ago, and we went through that together.
Winter 39:02
Yeah.
Jess Hennessey 39:14
I actually live a mile away from her now. So we purposely bought our home and—
Winter 39:18
Oh! That’s great.
Jess Hennessey 39:20
Yeah, we live a mile away from each other because we always imagined raising our children together and being so close. I woke up to my sister and she was able to tell me that they made a hospital exception to let her in, which is incredible. She actually had just gotten back from the NICU. She got to be with Addy. They could only allow one person at a time, but she said I’ve seen Patrick and I saw Addy. She’s beautiful. She’s perfect.
Jess Hennessey 39:49
The next part of that day was spent with a lot of specialists coming into our room. You know, hey, I’m so and so I am at Addy’s cardiologist or different specialties, and we found out that she was very sick. Her heart was very sick as well with something called hypo plastic left heart syndrome. Essentially, her left heart chamber had stopped developing, and it wasn’t detected at 22 weeks, which is incredible because it is usually something that’s caught usually between 13 to 17 weeks is what the doctor explained. So normally, it’s that in itself as a terminating illness, you have to have heart transplants if the baby’s healthy enough, and she obviously was very sick with hydrops. Even though they were how I kept trying to understand, as I said, she’s got these and her lungs were underdeveloped. So I said, all these different things were happening. And I said, but they’re different things. So it’s not like one caused the other it’s not good causation. I just kept trying to ask those questions and understand, and they said, correct. So she has had a heart condition, likely since conception that was undetected, her lungs then stopped really forming probably in the last, three to five weeks, because then she developed hydrops. They’re all kind of interrelated to just that she’s sick, but it’s not like one caused the other.
Jess Hennessey 41:12
That was really hard for me. I remember just trying to understand because I was so—everything was so confusing. I was so lost, and you know, eight hours prior, and now the next day. I mean, she was healthy in my belly, and now it’s not healthy anymore. She’s not well, and so yeah.
Jess Hennessey 41:28
We have a lot of specialists coming in telling us different things. Essentially, you know, we were at this point where she was making some very small improvements, and then would take 10 steps back. And essentially, they just said, Look, you know, we will continue giving her and you the best care possible until it’s not. It’s not appropriate anymore. I said, Okay, I said, my biggest thing is, she can’t suffer. I said, I’m her mom, like, she can’t suffer. They agreed. So I said, If I asked you how she is, be honest with me, and this was her doctor, he’s amazing. And he said, I promise you, I will.
Jess Hennessey 42:09
So it was nine o’clock the night post surgery. So it was the ninth of October. At this point, I can see my cell phone, my sister’s there and my husband’s there. They’re updating the family, which is all that mattered. I didn’t realize all of my in-laws had driven into the hospital. They were all five hours away from us. They were all there, but they could not physically get in the hospital.
Winter 42:30
Right.
Jess Hennessey 42:30
Because of COVID.
Winter 42:31
Yeah.
Jess Hennessey 42:31
So they’re literally on the outskirts of the hospital hanging out in parking lots and bringing my husband and my sister food. Jenny, my sister, Jen. Jen, and Jess, my mom, and dad were very creative. She would just kind of go run and eat and go check on me and go check on Addy. It kind of became this circle thing.
Jess Hennessey 42:48
I of course could not go see Addy until I met those milestones. When I did, it was amazing. It was about nine o’clock at night. I was able to go see her. They wheeled me down. She at this point was sedated. So she wasn’t moving. She still was all toasty in that heat thing. I remember saying I need to stand up and they’re like, you just had surgery I’m like I don’t care. I’m like, I want to get as close as I can to my daughter because I don’t know how much time I have left. So I stood up and I was able to talk to her. I actually had a little cuddle lovey that they gave me which I thought was very sweet that they said just you know, cuddle with this. We’re going to give it to her so that she has your smell. We did that. So she had my cuddle little lovey.
Jess Hennessey 43:32
At that point when it was time to say good night, I was really tired. I needed some more medicine. I was in a lot of pain. So they got me back up to the room. I got some medicine, my sister Patrick and I went to bed. Then at 12:26 they woke us up. The nurses came into my room and said, it’s not good, something’s not going, it’s not good. I’m not, it’s not well, it’s not good. We need to get down to the NICU right away.
Jess Hennessey 43:57
I just remember postsurgery flying out of my bed and adrenaline is rushing in. They put me in a wheelchair, they wheeled me down right to the NICU. My sister had to stay outside, but they let Patrick in. Because they only allowed one person and of course in this instance her doctor, who I am so grateful for. I looked at him in the eyes and I just knew. He said I could put another chest tube in. Another chest tube and at this point it was five chest tubes. And I said no. No. My husband and I looked at each other. I just remember saying I’m not ready. I’m not ready to say goodbye
Jess Hennessey 44:41
But as a parent, and I waited— Sorry. Sorry Winter. Okay.
Jess Hennessey 44:51
I’m a parent and being a first time mom. She was my first baby. I couldn’t ever let her suffer. I knew she was suffering. This was not giving her the life she deserved or the quality of life that she deserved. So we said just stop. And they did. They took all her chest tubes out, and they were able to hand her first to me. And it was the first time I held her. She was so perfect. The nurse had told me she weighed five pounds one ounces. So I got to hold her. Then they handed her to my husband. Actually, that is the first baby he’s ever held, which is very, very special. So she will always be the first baby he’s ever held.
Jess Hennessey 45:37
Then the hospital again, we’re just incredible. They let my sister into the room. My sister got to hold Addy while she was still alive. So the three of us got to be with her. It was incredibly peaceful. If you can imagine being in turbulence, and having that moment with her was just, I mean, it was my goodbye. But we got to hold her. And she passed away. Somewhere in between me and Patrick. Patrick and I, she said she passed away. But she was pronounced deceased. She was pronounced dead in my arms. We got to meet her. We got to hold her and she passed away in our arms. Yeah. So that was her birth. She’s perfect.
Winter 46:33
Yeah.
Jess Hennessey 46:34
She has, you know, it’s amazing how life can change so quickly. Eight hours is, you know, from the time of her diagnosis to the time she was born. And of course, all of the aftermath following, but in those few moments with her. Some people don’t get that opportunity and I did. And so I’m very lucky. She was perfect.
Winter 47:04
Jess, can you tell me how you guys chose her name because it’s so beautiful?
Jess Hennessey 47:08
Oh, thank you. Absolutely. So really, her first name is a really fun story actually. So we—
Winter 47:15
Oh is it?
Jess Hennessey 47:15
Yes. So I told you, we thought she was a boy. So we had all of these boy names lined up. We’ve been thinking of boy names. Really since you know we first met. We never— Yeah, my husband has brothers. There’s just a lot of boys in the family. So we just kind of assumed we’d have a boy. So there’s an app called Kinder and it is a name app. Similar to Tinder.
Winter 47:40
Yeah?
Jess Hennessey 47:41
Where you swipe left, it’s exactly what it is. Swipe left for a name that you like, swipe right for a name you don’t. You match with your partner’s phone. So if it’s a name that you both matched on, it’ll Yeah— So we and I don’t remember, I must have heard that from one of the mom apps or the mom podcast, I was listening to you. I’m like, this would be fun. So we were actually on our living room couch one night. This was before we found out she was a girl and the only name that we matched on that was for a girl was Addelyn. So yeah, the only name matched on so we’re like, great. So if it’s a girl, it will be Addelyn and it was so fun how we came up with that. Now her middle name Renee is actually my mother in law’s middle name. So it is a name a namesake for the family.
Winter 48:27
Right.
Jess Hennessey 48:28
My mother in law is one of the most important people in my life. I could not think of anybody more deserving to have a name and baby named after her. So that’s where Addelyn Renee came in. So yeah, Addelyn was really fun and Addy. We just thought that was so cute. You know, I can picture her so perfectly, a little Addy. You know her blonde pigtails is how I pictured them running around and crazy.
Jess Hennessey 48:52
Yeah cause she would be the only girl really and the first grandbaby. So that was really exciting for everybody. Just Oh, it’s a girl. And, you know, she’s the first and yeah, she would have been. She would have been a little princess. I just imagined her like that. Getting anything she wanted. My husband always said, oh, we’re in trouble. Because you know, she’s gonna get whatever she wants. And so yeah, that’s how we came up with her name. And I love her name.
Winter 49:20
I love it. It’s so cute. I just love the story behind it. That’s so great.
Jess Hennessey 49:27
So I read this app. I’m like, geez, and so of course, we still have all of our boy names. Don’t have another girl name, but we have Addy.
Winter 49:37
That’s good. That’s good. Oh, man, that is? That’s great. Tell me a little bit more about after Addy passed away though. So you guys, she was in the NICU. So I imagine you guys were able to stay there for a little bit? What was the policy? I don’t know the policy at OHSU.
Jess Hennessey 49:58
We were able to stay and spend some time with her. Then they asked if we wanted a professional photographer to come in. They had a volunteer service. We said absolutely. They were able to actually capture some pictures which are so treasured. Her little toes and her little feet, her hands and her fingerprints. Then she also, the photographer was able to capture some pictures of us holding her while she was still alive.
Jess Hennessey 50:23
Then after she had passed away, I don’t know if I was in a state of shock, necessarily, or just, I mean, I was still feeling all that pain. I think at this point, it was probably more hard, you know, emotional pain and physical pain. But they said, Do you want to go back to the room for a little bit, and we’ll bring her to you. I said, I would actually love that. To have her in an environment that’s not so busy with the doctors and the nurses kind of standing around.
Jess Hennessey 50:50
So my sister actually was able to stay with her while they dressed her. They asked if there was a specific outfit we had brought, which we didn’t. Even though I had the entire nursery set up and all of her clothes, they were all at home. I already had everything ready to go. But of course I didn’t. My poor husband, when I told him to pack everything, you can. He didn’t pack that because we didn’t know.
Winter 51:10
Yeah, of course.
Jess Hennessey 51:11
They did have some nice options. So we were able to choose an outfit for her. Actually, my sister stayed and was able to change her diaper for the first time and dressed her. So her Auntie had that privilege. I am so grateful.
Winter 51:25
Yeah.
Jess Hennessey 51:25
She was absolutely my sub in while I was not myself and physically not doing well. I was still recovering from ear syndrome and all that. So then they were able to— about I would say an hour later, they got the pictures of her hands and her feet. They got the prints. They were able to do a mold for me of her feet and hands. So they did all that.
Jess Hennessey 51:45
Then they brought her to me. Then surprise, the hospital made another exception. My mother in law and my father in law. So my husband’s mom and dad. They had been kind of on the outside of the hospital. They let them both in to meet Addy.
Winter 52:01
Oh!
Jess Hennessey 52:02
So they got to both be with Addy. She had already passed. But my mother in law got to hold her and be with me to comfort me and Patrick. That was really a difficult moment, of course, to be in that room with them because she was the first grand baby. I think we all— Yeah, so. But we did get to spend some time together with her.
Jess Hennessey 52:23
They really gave me unlimited amounts of time. I don’t remember how much time had passed. It was all just very, you know, I held her and was with her. But at some point, it just felt like it was time to say goodbye to her body because her soul, her soul was perfectly perfect. So, they took her. At that point, they asked Patrick and I if this was okay. We said yes. Then it was just Patrick and I. I’m pretty sure they gave me some really great sleeping meds because I was able to sleep a little bit.
Jess Hennessey 52:56
Then the next morning, they asked some of those logistical questions that you don’t think about when you get pregnant. Like would you like to cremate your daughter? Or do you want to have her buried? I think COVID posed an entirely new element to the conversation. Like we might need to embalm her or preserve her. Those are just things that you don’t want to hear as a parent and going through this horrific experience. So OHSU is also a school for the it’s not a university, but it’s a school study program. They do a lot of Medical Teaching.
Winter 53:33
Yes, yeah.
Jess Hennessey 53:35
Yeah, so they asked if they could keep her organs actually, for studying. because babies with hydrops are still pretty rare. Then to have all these other kinds of things going on with her organs, they asked if they could preserve them to study them. We said yes. We couldn’t imagine a better place for her to hopefully help other future babies. It would be the idea and continue to give value to her life.
Winter 53:58
Yeah, that is Oh, that Wow. Okay, that’s so great. I just yeah.
Jess Hennessey 54:04
So we were able to, we consented to having them preserved her organs. And then we had the rest of her cremated. I remember, you know, just like during that period in the hospital, we’d try to make light of Oh, well, this is a less crappy thing that happened. One of the less crappy things that happened was this incredible funeral service home, anybody who lost a child, they would do all the services 100% free.
Winter 54:31
Oh!
Jess Hennessey 54:31
So I just remember thinking like how? I didn’t even think that was people— when you’re a parent, and you’re so devastated. You lost your baby and to just have some type of like, wow, there is still good in this world and how I felt at that moment, at least. So, you know, we talked through the logistics of transportation. They said they’ll come pick her up and this is where she’s going to be. She’ll be safe here at the hospital. We’ll move her there. Then you guys will go and find paperwork with her there. You can ask them whatever you need. They could do more prints for you guys. But it’s typically about a week to two week turnaround until you get her ashes.
Jess Hennessey 54:32
I had all of my family there. So I wanted to be at that point admitted out of the hospital or discharged as soon as possible. So I was actually only in the hospital for another day.
Winter 55:02
Oh for a C-section?
Jess Hennessey 55:21
Yeah, yeah. They let me go home. I think it’s partly and also at that point, I’d made huge recovering strides with my mirror syndrome. I was losing fluid like crazy. In fact, in the month after her birth, I lost, I think, 60 pounds.
Winter 55:33
Oh!
Jess Hennessey 55:34
All of it was fluid. Yeah.
Winter 55:36
Oh, my goodness.
Jess Hennessey 55:37
Yeah, it was I mean, so I was losing weight rapidly with all the fluids coming out. I think so too, because my sister had been there. She was a nurse and she ended up living with us for three weeks after Addy had passed. My mother in law was there, they felt comfortable discharging me. I had made all the right strides.
Jess Hennessey 55:54
After that, I just wanted to be home. At that point, as difficult as I knew that going home would be to her things, all of that without her. So I was able to get home discharged as soon as possible. I think within a day or two, we went to the funeral home, and we signed paperwork, and they did some more prints for us. They didn’t ask if we wanted to see her there. I wish I would have thought about that. Because I know that some funeral homes allow you to go see babies. Your baby or family or loved one after they’ve deceased that passed away. I wish I had asked maybe to see her. I would have liked to have seen her one more time, but I didn’t .
Jess Hennessey 56:34
They were incredibly kind. My sister and I went online. We found this amazing place in Maine who did custom urns. We were actually able to get her feet and hand next to her name on her urn. So it’s actually her life size hand and footprint which is incredible.
Winter 56:52
Yeah.
Jess Hennessey 56:54
They were able to rush ship so that way we could get it to the funeral home. We were able to have her and you know, within a week, we went and picked her up. We actually my dad, he offered to pay for things that needed to be paid for which were 100% free. One thing we did buy is her colors. In my mind, like I said she was a little princess, were pink and white. My whole baby shower. I’m not the girly girl type. So it was always this joke. Like I never wore pink in my life. Then all of a sudden I have pink flowers around me. We’re gonna make a garden outside of our new house that is pink and white flowers only. My dad actually bought this beautiful little metal flower that was pink, and we have some of her ashes stored in there as well. That’s a little bit more mobile.. It’s a little bit more mobile.
Jess Hennessey 57:44
So we were able to donate her organs to be studied, and we decided to have her cremated and we actually kept her in her safe box. We did not take her out and actually have her here until we moved into our new home. So that was the first night we moved in. That was a big moment for all of us. We took out the urn, and she was here with us. So yeah.
Winter 58:07
Wow. So many— That was hard. I was like, I don’t know how you guys did it? I don’t know how you did it. I am sure that that was very, I guess I kind of want to know how you were feeling after she passed away was it— I’m sure that there was some gratitude for being able to show her off to your family since they were able to come in which is so great. But were you also feeling— I mean, I guess tell me how you’re feeling after all of everything. Because it is just a whirlwind sometimes. It’s just like how do I feel about all of this that just happened?
Jess Hennessey 58:46
I was, I think, first just very numb. I tend to, you know, when horrible things happen. I tend to go into what I call a kind of automation mode. So I remember coming home and wanting to just clean my house and pack up her things and just, I don’t know, feel some type of normalcy. So I was like, numb and wanting and seeking normalcy.
Jess Hennessey 59:12
Then I became incredibly sad and actually very anxious. In the days following her passing I had some incredibly severe anxiety attacks, which was the first time in my life I’ve ever suffered through anxiety. I remember , you know, we were talking about vitamins my sister and I something so miniscule, and she had said Oh, too much potassium, you know, could cause heart defects. It was not that intent, but I immediately just had a panic attack. What if I did this right? What if that’s what caused this?Or, I was cleaning the showers when I was pregnant once and and oh my gosh, what if that chemical caused this? Or even I was so careful or that one glass of wine I had, you know a week before my two week waiting period. What if that caused this? I just remember having a lot of feelings of this is My fault I caused this. Then having that sadness of what if I did cause this? What if this was my fault, and it was all of this heartbreak and trauma in her life, it was my fault. I remember being incredibly sad, and then moments of numbness, but a lot of anxiety in those few days following her passing and even coming home, a lot of anxiety, which was not normal for me.
Winter 1:00:23
That has got to be such a traumatic experience also, just in general. So I can imagine the anxiety like I can relate to the anxiety.
Jess Hennessey 1:00:33
It’s a different type of anxiety, right? It’s, for me, I never I mean, like I said, I’ve had nervousness or, you know, moments of it before. Job interviews or wow, you know, looking back at a day, like it was a really bad day.
Winter 1:00:47
Yeah.
Jess Hennessey 1:00:47
Feeling anxious about it. But this was like, wow, I had life inside me. Then it was just suddenly, like, my pregnancy was ripped from me. All of a sudden, I was still feeling like the Phantom kicks, right? So your body is still trying to adjust to not being pregnant now. And it was. Then I think that anxiety morphed pretty quickly into anger. I had a lot of anger, following her death, and just feeling different things at every moment, which was not normal for me. As the planner who is structured, who has all these things in her life, just kind of meticulous, and you know, my whole house is in baskets normally. Then to have all these feelings that are all over the place, and not being able to control them. Because you’re just in such a traumatic state at that point. So that’s how I was feeling post her death. Yeah.
Winter 1:01:37
Yeah. Just, it’s just so it’s devastating. It’s Yeah. Jess tell me I just want to hear a couple last things about Addy. I want you to tell us something that you remember about her that you want to just share with people. Like I kind of want to know a few more things like, How big was she and how long was she? You said she had dark hair when she was born, which was a surprise to you, which is so delightful. I was like, oh, that wasn’t I didn’t expect that. Tell me tell me a little bit. Last things that you want to tell us and remember about your Addy?
Jess Hennessey 1:02:14
Yes, I would love to. So she was born 15 inches long, which at 30 weeks. I mean, we knew she had long legs. So that was, you know, right in line with what we thought so she was 15 inches long. She was born five pounds one ounces, which a lot of that I know was maybe fluid. Her little hands and little pills were perfect. She had dark hair just like me. It was actually very thick. I’m like, wow, this I mean, I can she had a full head of hair. She’s gonna have a full head of hair and no wonder I had all that heartburn. The only thing is that we did not get to see her eyes because they were so swollen when she was born. But my husband and I both have pretty blue eyes. I can just imagine her blue eyes if we had been able to see them.
Winter 1:03:01
Did you guys end up having an autopsy or anything outside?
Jess Hennessey 1:03:05
We did.
Winter 1:03:05
You did? Okay. Anything inclusive in that? I mean, were they able to kind of pinpoint any other things?
Jess Hennessey 1:03:15
That’s a great question. So we did have an autopsy. They found nothing conclusive. Besides that she had hypoplastic left heart syndrome with just an underdeveloped left heart chamber that, you know, resulted in blood flow being improper. The valves are not closing. They also found that her lungs were underdeveloped. The hydrops was likely again, a symptom not a causation necessarily of one or the other. It was not an immune hydrops. So the difference between immune hydrops is that it’s usually related to the mother and the baby’s blood, which is pretty meaning they’re different. And it causes basically kind of—
Winter 1:03:50
— attack on the—
Jess Hennessey 1:03:52
Yeah, exactly on the immune system of the baby. But that is pretty rare now because they test the mother and the baby’s blood very early on. So she had non immune hydrops. So essentially, it could be a variety of different things, mostly related to some type of defect in the heart or major organ. But all of her chromosomes came back completely normal. So genetically, there was nothing. We actually went and had further testing done. OHSU continued to advocate for Patrick and I, and, of course, wanted to continue our journey to having a family. We had maxed out all of our insurance claims for the year. So we said why not? Let’s go get this crazy, you know, $10,000 genetic tests, but I also might as well moving forward. We actually had that done in both of them and came back that we were completely compatible. So there were no genetic potential abnormalities if we were to try to conceive again, and there was nothing that through those tests, either that came back that they could see an ad each genetic testing, and so everything was 100% fine.
Jess Hennessey 1:04:51
With all of the tests. Her autopsy just showed things that we knew essentially led to her being so sick and passing away. They could not find a cause. So they said that this is— they can’t explain why this happened. The only thing that they told me is that it likely happened at conception. So whatever that looks like, and I they’re like, so you did nothing wrong. That is so hard to hear, because I almost wanted to know, this cause this caused this and here we are today, right? That’s not her story. You never know what happened, or why it happened. So yeah.
Winter 1:05:28
Thank you for sharing that. Jess it has been delightful hearing little Addy’s story I just I am so grateful that you were able to give voice to her and, and share her with us. So thank you so much.
Jess Hennessey 1:05:41
Thank you for having me. And thank you again, for everything that you do for this community. Winter, you and Lee, and a time of real sadness and feeling very alone, essentially, in COVID times I found your podcast, and I found a community of incredible parents who we all have a very different story. But it feels very nice to not be alone when you face something this horrid. So thank you for doing this and allowing me to be a part of that and hopefully reaching others the way that you’ve reached me in this time. So thank you.
Winter 1:06:11
You’re welcome! It is our pleasure. It is our pleasure. I mean, as much as it stinks to be a part of this club, right.? We’re in it together.
Jess Hennessey 1:06:11
Yes we are.
Winter 1:06:23
Well thank you again.
Transcribed by https://otter.ai