podcast episode

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

Mom Tiffany tells the birth story and death of her daughter Khyana, of how she got pregnant with her boyfriend at the time, but she found out that she had an incompetent cervix. She was 1-2 cm dilated around 24 weeks, so they admitted her to the hospital. Tiffany’s water broke a few days later and she developed an infection a week later. She was induced and gave birth to her daughter Khyana, who needed to go to the NICU because her lungs were not developed and needed assistance breathing.

The doctors discovered an infection, likely due to a hole in Khyana’s bowel, and were prepping her for a procedure to fix it, but her heart stopped before the surgery and she died 4 days after she was born.

Watch here (YouTube):

Listen here (podcast):

Time Stamps:

00:00 Welcome
02:43 Pregnancy
05:51 Problems with pregnancy
07:13 Admit to hospital
10:47 Giving birth to Khyana
20:03 Khyana in the NICU
23:49 Khyana has an infection
26:45 Her heart stops
31:49 After she Khyana dies

You might appreciate these other episodes:

• Watch/listen to Tiffany‘s advice episode after Khyana‘s death: Click here

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Full Transcription:

Tiffany  0:01  

Khyana.

Tiffany  0:08  

I loved her hair. She was so small. I wasn’t expecting her hair to look like that. She has beautiful black hair.

Winter  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  0:26  

And I’m Lee, we are grateful you joined us today. Please note that this is a story of loss and has triggers.

Winter  0:32  

Thanks to our loss parents who are willing to be vulnerable and share their children with us. 

Lee  0:36  

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  0:43  

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  0:56  

Tiffany, thank you so much for coming on our podcast today. And we are so so grateful that you have joined us and are willing to tell your story about Khyana. Tell us a little bit about yourself and kind of who you are. What you do, where you’re located currently, and maybe where you were located at the time of Khyana’s birth.

Tiffany  1:18  

Well, at the time of her birth, I was in the DC area that was actually working in DC. That was the first job I had out of college. I’d been there for a little over two years at that time. A little over two years, I think. Um, and now I am in Japan.

Winter  1:43  

Okay, so you’re in Japan for your work specifically? 

Tiffany  1:47  

Yes, ma’am. 

Winter  1:48  

Awesome. And are there any things that you like to do per your, like, as hobbies? Or what kind of things do you like to do on a regular basis?

Tiffany  1:57  

I like to travel. That’s been hard with COVID. But I like to travel and see new things. Since I just got here. I can see new things. Because they’re new to me right now. I know later on they probably won’t be new. Right now. I’ll see new things. 

Winter  2:15  

Yeah, I’m sure you are enjoying that. That’s great. That is awesome. So and then just as a little bit of credit, for context. How long ago did Khyana’s birth happen?

Tiffany  2:27  

Next month it will be three years.

Winter  2:29  

So it’s been three years since that. So it’s, there’s a little bit of time that has passed by. Okay, well, then, can you give me an idea of what your family looks like? At the time of the birth?

Tiffany  2:43  

At the time of the birth it was just me and my boyfriend. He’s my ex now. But it was when we were together. 

Winter  2:51  

Gotcha. Okay.

Tiffany  2:52  

I don’t have any other kids.

Winter  2:54  

Okay. Were you always planning on getting pregnant? Was that something that was on your radar?

Tiffany  3:02  

No, it was just something that happened. I actually just had PRK about a month before I had gotten pregnant. You’re actually supposed to wait, if you are going to even try to get pregnant. You’re supposed to wait six months to a year. So it was a surprise. Luckily, I can still see.

Winter  3:22  

That’s good. Just for everybody PRK is a surgery for your eyes so that you can see a little bit better. Is that correct? 

Tiffany  3:29  

Yes. It’s similar to LASIK. 

Winter  3:31  

Yes. Okay. Wonderful. So you were that was a little bit of a surprise for you. Um, so were you concerned about that? Was that something that you were, you know, mad about? Or happy about? Like, were you okay with it? I guess that is the question. 

Tiffany  3:50  

Um, I was actually kind of surprised that I was pregnant at the time. I was shocked because first like I said earlier, I hit PRK. So it’s like, oh, you’re not supposed to get pregnant. I’m like, I wonder if I lose my eyesight. But the second thing was like okay, we’ll be here in the DC area. Is it expensive to live in the DC area, but I was actually kind of happy. 

Winter  4:16  

Okay, that’s great. What about your ex? Your boyfriend at the time? What did he think about it?

Tiffany  4:24  

He was happy when he actually believed I was pregnant. I don’t know what was going on with him. He was like the pregnancy test lies, but I feel horrible. I feel terrible right now. Like, I feel so sick. Like this is my way of telling the lies out. Eventually I got another test to confirm and he was excited about it after that. He thought the pregnancy test was wrong.

Winter  4:48  

You’re like it’s a false positive. Come on. No. Okay, well, that’s great then. How did your pregnancy go? Was it okay? Was it? Were you really sick? It sounded like you were a little sick.

Tiffany  5:05  

I was sick. At the time, I was actually morbidly, I’m not morbidly obese anymore, but I was morbidly obese. Um, I had bad eating issues as well. Like my throwing up. I constantly threw up. Anything in my stomach was going to come right back up. 

Winter  5:23  

Oh.

Tiffany  5:24  

Yeah, that first trimester was pretty rough. They told me what medicine–The doctor told me what medicine to take. And it helped a lot. By the time the second trimester came. I was a little more comfortable.

Winter  5:37  

Great. Okay, well, that’s good. I know. It’s always tricky. How were your checkups? And as you were going along, were there any health issues, anything that was brought up that was of concern?

Tiffany  5:51  

Well, um, first trimester other than I was like throwing up and being morbidly obese, I was fine. The second trimester, they discovered that I had an incompetent cervix. It’s called IC. And with that your cervix is dilating before it’s time. It wasn’t really a fertility issue, it was an issue of staying pregnant.

Winter  6:14  

Yeah. Did they do– did they propose anything to try and help make sure that you didn’t go into premature labor?

Tiffany  6:23  

They tried. What happened was they gave me progesterone pills to use. I had to take those. Well it took about a week because of insurance to even get them. So they had to do some kind of authorization. As soon as I got that I took them religiously. I went back to the doctor to find out that I am like a centimeter or two dilated already.

Winter  6:47  

What week were you with that– would you say that was?

Tiffany  6:50  

That was 24 weeks. 

Winter  6:53  

Oh. 

Tiffany  6:54  

I was about to be I think I was about 25 weeks. I was 24 weeks. I had just taken a picture with a sticker saying “I’m 24 Weeks Pregnant.” 

Winter  7:02  

Okay. Oh, man. Okay, so you were taking the progesterone, any other things that they were trying to help? Kind of, like you said, Keep you pregnant.

Tiffany  7:13  

They admitted me to the hospital when they saw that I was dilated. I stayed in the hospital for I think about two weeks. 

Tiffany  7:21  

Oh.

Tiffany  7:21  

Yes, in the hospital for about two weeks. And that included having her, but before they found out I was dilated, they took me to I guess like labor and delivery and put me on magnesium to help keep her in. 

Tiffany  7:37  

Then I went down to another floor after that. The labor and delivery floor was more serious. So after they put me on a magnesium, I was done. They took me to another floor. I forgot the name of it. But it’s for people who are waiting to have their babies who don’t need to be in labor and delivery. They might have a few complications or people who’ve already had that baby. 

Winter  7:54  

Gotcha. Okay. 

Tiffany  7:54  

They put me in that area and they gave me– tried to give me medicine and stuff. And make me do bed rest. But unfortunately, it didn’t work. When they were thinking about sending me home, because they thought it might be good to go home soon. So like probably the next day or two. Something like that. That same day my water broke. 

Winter  8:16  

Oh, it did?

Tiffany  8:18  

It was the same day that I was trying to get home. I don’t like hospitals. 

Tiffany  8:23  

Yeah.

Tiffany  8:23  

I don’t like hospitals at all. My water broke that day. So I called the nurse in and they took me back upstairs. They gave me more magnesium, and a ton of pills and antibiotics. Then they took me back downstairs again because they were gonna try to keep her in even though my water broke. As long as I didn’t have an infection.

Winter  8:45  

Gotcha. And tell me were you feeling any sort of contractions or anything? Nothing?

Tiffany  8:50  

I never felt contractions during that time. 

Winter  8:53  

Okay, so they were just basically trying to see if she would stay in. As long as there was no sort of infection then they would just kind of proceed as like just keep her in there as long as possible so that she can grow?

Tiffany  9:06  

Yeah, they were gonna try to keep I forgot how many weeks 32, 35 or something like that. They were going to try to wait. As long as I wasn’t sick there wasn’t a question. Nothing was going too bad. They have to keep me in the hospital because my water broke. So I couldn’t leave the hospital after that. 

Winter  9:20  

Right. 

Tiffany  9:21  

Anything can happen.

Winter  9:22  

Yeah. Yeah, exactly. And just to go back a little bit, did you?– It sounds like you guys found out that you were having a girl at maybe the 20 week ultrasound scan?

Tiffany  9:34  

Yeah, I think it was around 18-20 weeks. 

Winter  9:37  

Okay, great. Yeah, yeah, that’s so exciting. 

Tiffany  9:41  

We both wanted a girl.

Winter  9:42  

Really?

Tiffany  9:42  

We thought she was gonna be a boy at first, that’s the thing. Because I went to an ultrasound before that with my regular Dr. They were like well, I think it is because I was like, Can you see if it’s a girl or boy? Because it was around that time. She’s like, I can’t make any promises, but I’ll try. She tried to look and she couldn’t really see much because she didn’t want to move. So she’s like, well, I think it might be a boy but don’t buy clothes yet. She’s like, I’m 80% sure it’s a boy. So I was like, wow, okay, and then we had another ultrasound two weeks after that. We found that it was a girl. So we were very happy because we both wanted a girl. 

Winter  10:19  

That’s so great. That’s kind of fun or different. You’re like, Oh, just kidding. I guess we are having a girl. That’s great. 

Tiffany  10:26  

Yes.

Winter  10:28  

Okay, so then you were in the hospital. You have been on bedrest? Yeah, you’ve been on bed rest for two weeks. Then the day that you decide to go, you’re like, we’re going to get you discharged. They are trying to get you out of your water breaks. Is that 26 weeks at that time, then?

Tiffany  10:47  

Um, so I was on bed rest. I got there around 24 weeks. I was on bed rest for like, a few days. Then my water broke. It was close to a weekend when my water broke.

Winter  10:58  

I see. Okay, yeah. Okay. 

Tiffany  11:01  

After that, then they say, okay, we’re gonna try to keep her in. But about a week after my water broke, I had started feeling very bad, I felt bad. I woke up one morning and was just really tired. I tried to do the normal stuff. There was a set schedule every day. I knew what was going on. I was laying in bed, a bunch of doctors coming in. That was what’s going to happen. I knew the same shows on TV already, because I had been watching TV. 

Tiffany  11:31  

So that day, I felt really bad. Later on that evening, I couldn’t eat. I could barely eat lunch. That was weird. I was always hungry. I could barely eat lunch. Then later, I just started feeling worse. So that was like, what you call it, maybe a resident or something came in and I told him I said, You know, I don’t I really don’t feel well. He asked me if I had a fever? I thought it was their job. But he asked me if I have a fever. And I was like, I don’t think so. He was like, oh, okay, then you’re probably just tired or something like that. But it’s the thing. It was the evening. So the doctors come back to that . 

Tiffany  12:10  

So even though he said that there was gonna be somebody else coming in at least two, three minutes later. They always play me like that in the evening. I said that, I’m just going to talk to the next nurse. I said, I want to talk to the next doctor nurse that comes in here. 

Winter  12:22  

Yeah. 

Tiffany  12:22  

So another two or three minutes later, another nurse came in. And I told her, I said, I don’t feel good. She asked me a few more details to describe what was going on. I did and she was like, hold on. I’m going to go and get something to check your temperature. I’ll be right back. So she came in, she checked my temperature. And she was like, Okay, I gotta look at the doctor. Because I had a fever and the way I was describing how I was feeling, she was like, yeah, I gotta go get the doctor. I’ll be right back okay. 

Tiffany  12:48  

So the doctor came in and the doctor was like, I’m gonna do some more blood work on you. But I think we need to go to labor and delivery. And she’s like, I’m gonna get you prepped and I’m gonna do the blood work really quickly. I’m gonna get you prepped, then we’re gonna go up to labor and delivery. It is time for you to give birth because you have an infection. I think you have an infection.

Winter  13:08  

Okay. What were you thinking at that time? When they’re like, Okay, it’s time. 

Tiffany  13:12  

Yeah, I cried. I cried when she told me that because I was only like, 26 weeks, 26 and a half weeks. So I cried. My ex at the time I called him because he was at home. So he came to visit and stuff of course, but he was working. 

Winter  13:27  

Yeah. 

Tiffany  13:28  

He had gotten off at the time. So he was at home. I thought he was at home. I call him like, Hey, I’m gonna have to give birth, you’re going to have to come up here. And he’s like, Okay. He’s like, he was leaving the grocery store or something. He’s like I’m gonna throw this in the house. Then I’m coming right up there. 

Tiffany  13:44  

So he came. They put me in a room. They put me back on magnesium again. And they let him in. And then they gave me the pitocin to induce contractions, because throughout the whole thing, I never had contractions. I never really was in pain the whole time until they gave me the pitocin to start the contractions. 

Tiffany  14:10  

Yeah. And those can be powerful contractions.

Tiffany  14:15  

Very powerful contractions. It was pretty bad. So because I wanted to give birth without an epidural, but because I was given pitocin I was like, I need the epidural.

Winter  14:25  

Yeah, you’re like, bring it on.

Tiffany  14:28  

Yeah, I’m basically like, bring it on. But it was pretty quick. Because that night is when I was induced. I had her that next morning. 

Winter  14:34  

Oh, wow. Okay. Yeah, very quickly. Um, so obviously, when you were told that you had to have your baby basically because you have an infection. You’re at 27 weeks, have the doc-

Tiffany  14:49  

–26 weeks.

Winter  14:50  

Excuse me. 26 weeks, had the doctors talk to you about what that meant if the baby was going to be born at that time. What did they tell you?

Tiffany  15:01  

Um, they told me about learning disabilities and breathing issues. They told me that when I first got to the hospital and got admitted in general I was like 24 weeks. They tell me that then. Then as I was, before I gave birth, when I was laying in the hospital bed on labor delivery, before I had her. They were telling me about the complications. They told me that girls have a slight, slightly higher chance of surviving the boys. They told me neurological issues, you know, things like that could happen. Breathing issues, and they told me that they were going to try to help her. And you know, stuff doctors usually say.

Winter  15:38  

Yeah. What were you thinking about what they were saying? Were you worried about all those things? Well, I guess the other thing is that you were worried about the possibility that she wouldn’t make it?

Tiffany  15:51  

I was. I told my ex when we first got to the hospital when I was in labor and delivery. I told him at the beginning I said, she’s not gonna make it. I said, she’s gonna die. We’re gonna lose her. I told him that at 24 weeks. I said she’s not gonna make it. He said yes she is. I’m crying and I said no she’s not. She’s not going to make it. She’s not gonna make it. The second time that the doctor was talking to me right before I gave birth. I was actually Okay, at that point. I wasn’t crying or anything. I was fine at that point.

Tiffany  16:29  

When I gave birth to her that morning, she came out and she didn’t cry. I was like why? I couldn’t see it at first, because the way they had me positioned. Why wasn’t she crying? Why didn’t she cry? My ex Corey is explaining that she’s just looking around. Like, she wasn’t crying. But she was so amazing. She was so surprised she couldn’t cry. So I was laughing because she wasn’t crying. She tried to cry a little bit after they tried to get her away. But she was so surprised. She just looked around the whole time.

Winter  17:03  

Really?

Tiffany  17:05  

Really.

Winter  17:05  

She’s just looking around observing the world. She’s like, wait a second.

Tiffany  17:09  

In shock observing the world. That’s why she didn’t cry. So she came out and my ex is like, look I told you she was gonna be okay. Look, she’s looking around. She’s looking around. She’s, she’s gonna be okay. He went over there to look at her while they were doing work on her and stuff. They took her as soon as I had her. They took her and they put her in a room kind of connected to mine. They put her in that tube and put the bags and everything on her. And he was like, you know, I looked over and she’s okay. She’s fine. And I was like, okay, and one other thing. They told me before I gave birth, they say I might not see her for 24 hours. And I was thinking why I said I was like, that’s not gonna happen. But oh, yeah, I made sure that didn’t happen. I went to see you.

Winter  17:51  

Oh, good. So you labored. They started you on pitocin the night before. And then you gave birth to her in the morning? What time is it in the morning? 

Tiffany  17:59  

I think it was like five. I’m not exactly sure about the time. I forgot the actual time. It was like five or something in the morning.

Winter  18:06  

Okay, so several hours of laboring and when you gave birth, what, what was your feeling? Like? And it sounds like you were a little concerned that she wasn’t crying. But um, how did you feel?

Tiffany  18:18  

I was happy after I gave birth to her. So they said, you know, we’re going to take it to the NICU. And after they took her away, I fell asleep immediately.

Winter  18:24  

Oh?

Tiffany  18:24  

Like as soon as they  took her away, I fell asleep. And then after that, I woke up and I was like— because they told me before I fell asleep they said call us when you’re ready to get up and go to the restroom. Okay. So I fell asleep and I woke up and I was called by the nurse. I said, Okay, I’m ready to go to the restroom and I’m ready to see my daughter Khyana.

Winter  18:46  

Okay, yeah. 

Tiffany  18:48  

They helped me and put me in a wheelchair. The first time I went down there.

Winter  18:53  

Okay.

Tiffany  18:54  

To see her because it was a lot. Then they moved me. They made sure I was okay and they moved me back downstairs again since I’ve given birth. After that, I knew what they showed me where the NICU was at. So I just used the rail and walked myself— using the rail I dragged myself down there. Kind of like walking. They were like Wow, you’re doing great. I was like yeah my daughter’s in the NICU. I can’t wait for somebody to bring me a wheelchair. I gotta go see her. 

Winter  19:19  

Yeah, that’s great. Was it on the same floor at least?

Tiffany  19:24  

It was on the same floor.

Winter  19:24  

Okay good because I was like oh man! 

Tiffany  19:25  

It was a long hallway or what felt like a long hallway. It was on the same floor.

Winter  19:31  

Okay. 

Tiffany  19:33  

Yeah, everybody’s like you’re doing amazing after all that. I can’t believe you can get up and go down the hall. Because of everything that happened. I was like, yeah.

Winter  19:42  

Yeah. So she is. So when she came out, was she breathing on her own? Was she doing okay, like how? Was there any physical things that she was kind of struggling with? I guess she is only 26 weeks old. So that’s why I’m wondering.

Tiffany  20:04  

She didn’t have anything like her outside. She didn’t have any physical deformities or anything. They did have to help her with breathing. They actually took her off the breathing thing at one point for a very short period of time, I think maybe about an hour, hour and a half. But she wasn’t ready for it yet, so they’ve kind of put her back on there.

Winter  20:24  

Yeah.

Tiffany  20:25  

It was mostly her inside. Her outside was perfect. She is still very small, but she was a pound and 14 ounces.

Winter  20:32  

Oh, that’s small. 

Tiffany  20:33  

Extremely small, but her outside looked perfect. It was the inside that we’re having the issues with.

Winter  20:39  

Yeah, so her lungs were probably not developed and any other things that they told you about?

Tiffany  20:46  

It was mainly just her lungs and there’s like, you know, certain parts of her, you know, insides might not have developed fully, but it was mainly I think her lungs until she was about four days old.

Winter  20:59  

Gotcha. Okay. So tell me her name is Khyana. How did you guys choose that name? Is there any special meaning behind it?

Tiffany  21:10  

Not really. See we didn’t want her to have a name that everybody else had. My ex and I were watching something on TV and something or someone’s name was Tiana. He was like, he was like, how about Tiana? I said no, not Tiana. He was like, Okay, how about Khyana? I was like okay, I want to do Khyana. So that’s what we decided to call her and my sister actually came up with the spelling. So I wasn’t sure how I was going to spell it. My little sister came up with it.

Winter  21:40  

Nice. Okay, well, that’s, I love it when people are like, this sounds good. This fits her.

Tiffany  21:46  

Yes. That’s basically what happened. 

Winter  21:48  

So she is in the NICU and you are basically hanging out with her going and visiting her as much as possible. So what happens when she’s in the hospital?

Tiffany  22:01  

So the hospital that I gave birth at that’s where she stayed until she was four days old. So I told my boyfriend at the time. I was like, Can you bring a children’s book up here so we can actually read to her while she’s in the NICU. So that’s what we would do. We would both go to the NICU together and we would sit down and read to her.

Winter  22:22  

That is great. She’s all hooked up though. And everything to a breathing machine. 

Tiffany  22:28  

Yeah. It was hard. The first time I saw her I broke down crying because I saw all the tubes and stuff. All these machines and I started crying.

Winter  22:37  

Yeah. Were you able to hold her at all

Tiffany  22:41  

Not until she passed away unfortunately. I was able to hold her hands and stuff. But they wouldn’t let me pick her up and hold her out of the incubator type thing until she passed away.

Winter  22:52  

Yeah. That’s that doesn’t. That’s not great.

Tiffany  22:57  

Yeah. It was horrible.

Winter  23:00  

Yeah. So you guys are taking some time and spending it with her. She’s doing okay. It sounds like for a few days. Obviously, she can’t breathe on her own. But she is still doing okay. Is she putting on some weight.? I’m assuming they were giving her some tube feeds or something like that?

Tiffany  23:17  

Yeah, they were tube feeding her. And I was also pumping.

Winter  23:21  

Oh Okay.

Tiffany  23:22  

She did end up losing an ounce though. Going down to a pound and 13 ounces. And yeah, that was pretty rough. But I mean, it was only so much feeding her and giving her stuff that they could do to keep her weight up.

Winter  23:36  

Yeah. And babies usually do lose a little bit of weight while they’re in the hospital. In that first little bit. So what then happens?

Tiffany  23:45  

Day four we go in and we leave the house. We leave our house, we drive to the hospital. We go in and we see this x-ray machine over her. I was like why do they have that x-ray machine over her? The doctors are just like standing around. I noticed her stomach was distended. I was like what’s going on. The doctor was like, you know, we need to talk to you. I guess we came in at perfect timing before they called us. I was like, No. They said well we need to talk to you. They thought she needed surgery. She had some issue with her bowel and she needed surgery. And we need to transfer her to another hospital. To a children’s hospital with a level four because that’s a level three NICU I was at with her. She needed to be transferred to a level four NICU for surgery.

Winter  24:40  

Oh, wow. Was that hospital far away from the current hospital? 

Tiffany  24:45  

They were actually right beside each other. 

Winter  24:47  

Oh, okay. 

Tiffany  24:47  

So they are pretty much beside each other. 

Winter  24:49  

Okay, so it wouldn’t have been a super crazy trip or anything to get her there.

Tiffany  24:56  

Yeah, it wasn’t a crazy trip. It took a minute though because the ambulance had to get all the equipment on her. Then get her there with all the equipment and stuff. So that’s what took a minute really.

Winter  25:12  

When the doctor said that there was something wrong with her bowels, did they tell you it was a blockage? Did they give you any idea of what was going on specifically and what they would have to do for surgery?

Tiffany  25:26  

Yeah, they thought maybe there was a hole or something in her bowel. They kind of told me it was some procedure that they wanted to get the air out because her stomach was so distended.

Tiffany  25:35  

Okay. 

Tiffany  25:37  

So they want to do something to let the air out of her stomach when they transfer her. They couldn’t do it there, so they want to do it the other hospital.

Winter  25:44  

Okay. So they transferred her and then she went into surgery. Is that right?

Tiffany  25:51  

Yeah, I told her bye at the hospital. That was the last time I saw her alive at that hospital. At the level three NICU the one I gave birth to her in. When they transferred her. I didn’t see her. I saw the cart. The thing that she was in, but I couldn’t see her when they went past me. 

Winter  26:12  

Because you are still admitted in the hospital? 

Tiffany  26:15  

I just got out like I think a day or two before that. I just got out of the hospital. 

Winter  26:19  

Okay, so you really had not you hadn’t been spending tons of time with her. You were there and I’m sure you were in the NICU a bit, but you didn’t really get that the last time you saw her alive was right there in the NICU. So, what kind of risks and I guess what kind of odds and risks did the doctors tell you about even that surgery as she was going into it?

Tiffany  26:44  

They told me that the surgery, it does come with risk, but it will. It will help and it’s better than leaving her the way she was. The thing is she never ended up getting the surgery. They were preparing to give her the surgery. They were prepping like cleaning up like wiping down stuff like that. They were prepping her for surgery. That’s when her heart stopped. 

Winter  27:09  

Oh?

Tiffany  27:10  

So, she never even got the surgery. 

Winter  27:12  

Oh, wow. So her heart stopped when she was in the OR basically. I’m assuming they tried life saving measures as best as they could?

Tiffany  27:24  

They did. They came out and they told us about her. Because I heard a light go off. I saw a light go off. I knew honestly I just didn’t want to believe it. But I knew it was hers.

Winter  27:37  

Really?

Tiffany  27:38  

It was code blue, or something like that. A light had gone off. It was making noise and everybody took off into that room. So we weren’t in the room at the time it was in a waiting room.

Tiffany  27:47  

I knew it at the time before they even told us. I knew. We both– me and my ex we both kind of figured that was hers. 

Winter  27:54  

So you see everybody head off into that room. You kind of have this feeling. Do they come out and tell you shortly afterward? What’s the time timeline of events there?

Tiffany  28:07  

They tried. They came out and told us. 

Tiffany  28:09  

Okay, so after we saw everybody go into the room somebody later came out. It was two people who later came out and they said hey, like we’re trying to resuscitate your daughter. We are trying the best we can and stuff like that. It was another parent. There were more parents in the room. I started crying after that. That’s before we even got to go back there. But I started crying and everyone was like it’s okay, this happened to my son as well or something like that. She said that this happened to my son before to– Yeah, I think it’s her child. Her child as well and she’s like it will be okay because I was crying in the waiting room. 

Tiffany  28:47  

So the next time somebody came back out, they took us back. They didn’t tell us that they wanted to stop at a time. They just said we’re gonna take you back there with her. We walked in and we saw all these people over her like people putting drugs into her IV. Trying to give her CPR. We saw all of that when we walked in. I was just shocked. 

Tiffany  29:11  

The doctor was like,– what was the exact word that she said– There’s only one next step to take or something like that. And I was like, What is it? So we want to stop with resuscitation. We want to stop. And I started crying. The doctor put her hand up. She told him to stop. But after that honestly I do not think there was no bringing her back anyway. But the doctor told her to stop. 

Tiffany  29:42  

After that my ex stormed out of the room. I was just in the room crying because somebody had brought me some water in there or something. So, somebody went and found him and brought him back, but we were devastated. 

Winter  29:59  

Yeah. Yeah, how could you not be? So did you get to spend some time with her?After she passed away? 

Tiffany  30:08  

After she passed away, they let us hold her. They let us hold her and hold as long as we wanted to. Someone, I think a chaplain or pastor asked if we needed anyone at the moment. I was like no. No, we don’t want to talk to a chaplain or pastor or anything right now. 

Tiffany  30:31  

Then, you know, the doctors and nurses, they kept coming in and checking on us. They let us do the molds with her, as well as let us take pictures with her after she passed away. I can’t look at those pictures that they took. It’s been almost three years and I still can’t put that jump drive into my computer and look at them.

Winter  30:50  

Yeah, it’s too hard. Sometimes. It’s so hard.

Tiffany  30:54  

Yeah. There was actually a nurse there that had lost her son. Her son was I think her son was stillborn. So she came in and checked on us a lot. She was really sweet. She actually started crying too because I was asking her what to do? And she started crying too.

Winter  31:13  

Yep, it’s such a terrible thing. It’s so yeah, it’s devastating. And to have to remember all of that. So were we able to do the hand and foot molds?

Tiffany  31:25  

Yes.

Winter  31:26  

Awesome. 

Tiffany  31:29  

One they did with her father actually came out better than mine. Those did come out a little better.

Winter  31:38  

Then you guys got some photos, which is great. And Was that something that the hospital did like that? Were they able to take pictures? Or were you guys just have cell phones and that type of thing and took pictures with her?

Tiffany  31:49  

Actually, right after she passed? I told my ex I wanted a picture. I wanted a picture with them. So I can look at the one that was actually on my phone. I took a picture with her. I’ve never posted it. I never shared it with anybody. Because for me personally, I didn’t see her alive. I don’t want to post pictures of her not being alive.

Winter  32:10  

Yeah.

Tiffany  32:11  

So that was it for me. Like they’re there for my viewing only. They’re not for like the world’s viewing. So I’ve never shared those.

Winter  32:19  

Yeah, those can be so precious. And so personal and private. I think that’s great. That those should be yours. So you’re in the hospital. You guys get to spend some time. What were the next steps? What did they tell you about that? About what needed to happen after she passed away?

Tiffany  32:44  

Oh, they basically told us a social worker will be in contact with you. I remember that part. They gave me a few resources, but those were the main two things. I had a doctor. Well, I think she was a nurse who came out and told me she was like, you know, I didn’t know her long. But she was very feisty. Yeah it hurt a lot.

Winter  33:10  

Yeah. I like that. She was very feisty. 

Tiffany  33:13  

Yeah, actually, I was happy that you know, someone said something good about her.

Winter  33:17  

Yeah, exactly. We want people to talk about our kids in a good light, right?

Tiffany  33:24  

Yes.

Winter  33:26  

So a social worker comes in, you get some resources. Do they tell you what needs to happen? Like do they offer like, okay, you need to figure out what, what needs to happen in regards to her body. 

Tiffany  33:39  

Um, that came later the social worker came later they gave, they said, someone’s got to be in contact with me. So I think there was a social worker there. But that’s not the person that I ended up talking to afterwards. They assigned me to someone else. She was the one who called, she told me about, well, first, I need to think about it after she died. 

Tiffany  33:59  

That’s the weird thing. I didn’t think about what to do with her body. I never thought about that part. Like it never crossed my mind until they called me and asked me if I wanted to cremate her or have a funeral. I told them I will call them back later while I was crying. Because at that point, well, I’m not gonna back up a little bit. So I might Yeah, I might start off a little bit. So we left the hospital.

Tiffany  34:22  

 Okay. 

Tiffany  34:23  

With the baby stuff. Like all the stuff we had her because we were in a program. There was some program in the DC area where if you went to a few classes, they would give you stuff for your baby. So all this stuff, my ex had gotten the stuff while I was in the hospital and put it in the house because he was like, okay, so she’s in the hospital and now she’s probably going to give birth early. We’ll go ahead and give you everything. 

Tiffany  34:46  

So all the stuff was basically in the living room. 

Winter  34:48  

Oh?

Tiffany  34:50  

I went immediately to our bedroom and cried. I couldn’t I couldn’t deal with the stuff in the living room. 

Winter  34:58  

Yeah.

Tiffany  34:59  

I had my ex move everything into the second bedroom that we had at the apartment,so I can come out. My family actually came the next day after everything happened because they’re in Georgia and were in the DC area. So they were afraid. 

Winter  35:18  

Yeah. 

Tiffany  35:19  

So they ended up coming as well.

Winter  35:22  

That’s great. So they were able to be with you and help you with everything.

Tiffany  35:28  

Yeah, they were able to come and help me. Um, it was pretty difficult because I would just wake up and I would cry every day. Pretty much like that’s there. Yeah, the first few days that she died every day, I woke up in the morning, just crying because I knew she wasn’t there anymore.

Tiffany  35:42  

I couldn’t pump because I was full of milk, but I couldn’t pump it because I’m like, I don’t want to use the machine. I just didn’t want to touch it. I guess it hurt. It hurt too much emotionally to touch it. So I was just in pain. I could get a little bit out like in the shower and stuff. But I was hurting a little bit physically too. Someone told me some over the counter stuff that can help. I did stuff like that. That dried it up versus trying to pump anymore. 

Winter  36:13  

Yeah. Okay. 

Tiffany  36:15  

I couldn’t do it anymore. I couldn’t do it. 

Winter  36:18  

Yeah, it’s just another painful reminder. I think it’s another painful reminder that your baby’s not there. It stinks. So your family’s home with you. It sounds like obviously, you are so sad and crying a fair amount. Then is that when the social worker or the hospital calls and asks what you guys want to do with Khyana’s body? 

Tiffany  36:42  

Yes, she called right– Because my ex, he actually went back to work like two days later, I think. Because the next day was a holiday, Memorial Day. The next day was a holiday. The day after that he went back to work. So he wasn’t there, my family was there, but he went straight back to work immediately. 

Tiffany  37:01  

So when they called the social worker, I talked to her a little bit before that. But then she called one day and asked. I knew they were doing an autopsy. So I knew that part. But I didn’t. I just didn’t think about what they would do with the body afterwards like no clue. When they call and ask, I’m like, I don’t know what to do. I’m just crying really hard. My mom, she kind of brought me down. 

Tiffany  37:24  

So my ex came, my boyfriend at the time, he came to the door. We talked about it because at first I kind of wanted to do a funeral. Then I decided not to. I didn’t do that. To me. Me personally. It feels weird to have a body just sitting in the ground in a casket forever. So I didn’t. I didn’t want that for her. So we decided on cremation. We actually were able to actually cremate her for free. 

Winter  37:54  

Okay. 

Tiffany  37:55  

Yeah, it was some program that they had.

Winter  37:58  

I do want to go back, Tiffany about the autopsy. So they wanted to so I’m assuming you consented to having an autopsy on Khyana to figure out what happened. So what was it? Was there anything conclusive about that?

Tiffany  38:13  

Um, yeah, they told me that when it was finally over with, they called me up. They called me up and picked out a day. They told me that it was– a hard day because the doctor that was there for the day a social worker was like, “Hey, we thought she was going to be available. She was supposed to be available, but something happened. Did you want to reschedule it, or do you just want to talk to the person who did the autopsy?” I’m like, well, I’ve been waiting long enough for this at this point. I’m like, I just want to talk to the person who did the autopsy?

Winter  38:47  

Yeah. And how and how long was that? Before you got that information?

Tiffany  38:52  

Um, I can’t quite remember. I think it was about two months. 

Winter  38:56  

Okay. I was gonna say–

Tiffany  38:57  

–It wasn’t an immediate thing. 

Winter  38:59  

Yeah, exactly. I know a lot of people think that the autopsy is done. And then it’s like, oh, it’s like a you know, three days later, but I think that’s one thing that people–

Tiffany  39:07  

I wish. 

Winter  39:07  

Yeah, that’s one thing people I don’t think realize is that autopsies take a lot of time to do because they have to evaluate tissues and write reports and everything like that. So it does take like two months, like two or three months sometimes. So you did talk to that doctor, or yeah, you probably talked to the doctor who performed the autopsy. So what did they say?

Tiffany  39:28  

Um, they told me that because of the hole in her bowel. She was it— the whole in her bowel was pretty much what killed her and the fact that she was only like a pound and 13 ounces as well. I think that’s– I’m not really sure what they said about her heart and lungs and stuff. I think those were kind of weak as well, which was typical. But the main thing that killed her was her size and the infection that she had because she also had an infection in the hole in her bowel. 

Tiffany  39:58  

Yes, okay. So that would be so hard. Did you guys do any sort of memorial service? I know that you cremated her, but did you guys have any sort of yeah memorial service for her? Since it sounds like your family was there and or nearby anyway?

Tiffany  40:19  

Um yeah, we did. We went to Georgia and had it because my ex he’s from Georgia and I am as well. We’re from different parts of Georgia.

Winter  40:27  

Gotcha.

Tiffany  40:28  

We are both from Georgia. So we went to Georgia, and went to my parents house and hadit. His side of his family came as well. We had this big cookout. We had someone say a prayer before we ate it. It was nice. We had drinks. It was fun. It was fun. I enjoyed it wasn’t like a sad thing. That’s why I don’t like funerals personally. 

Winter  40:53  

Yeah.

Tiffany  40:54  

I wanted to do a celebration of life thing and just enjoy the life that– the short life that she did have. I don’t want to sit around and cry at a funeral that is just me personally. 

Winter  41:04  

Yeah, yeah. No, no, I think that’s how you would want to honor her. Right? I mean, you don’t want to be sitting around being sad. So that was probably quite the, that sounded like that was good. Maybe healing to have that time together as a family and to think about her. Now I guess the question is, how are you doing now? Like, how has it been for you?

Tiffany  41:33  

The month of May is always the hardest for me because her birthday ,her death day, and Mother’s Day are all in the same month. 

Winter  41:40  

It is just that’s like–

Tiffany  41:42  

-It destroys me every year until the end. I managed from the beginning of that month to around the 29th or 30th is when I’m okay. 

Winter  41:51  

Yeah.

Tiffany  41:52  

But that whole month I am a disaster. 

Winter  41:55  

Yeah. Just a reminder, right. 

Tiffany  41:58  

A painful reminder.

Winter  42:01  

Just a reminder. Well, can you tell me a little bit more? Anything more that you would like to tell us about Khyana about who she was and like yeah anything that you want to tell us that you’d like to remember about her?

Tiffany  42:17  

Um, I like to remember how sometimes she actually had a tight grip to be so small with her hands she actually had a really tight grip. I was really happy that she actually was –I mean she was four pounds 14 ounces so she was weaker, but she really didn’t look like it. She actually was a little strong. I saw muscles in her calf and stuff. I was like wow, I wasn’t expecting that. I was expecting a frail baby. A very frail deformed baby. I wasn’t expecting that. I know her insides we’re not formed correctly, but on the outside. She’s just an extremely small baby.

Winter  43:04  

Yeah. Yeah. That’s awesome.

Winter  43:11  

Well, Tiffany, thank you so much for sharing the story of your sweet daughter Khyana. We appreciate you sharing it. It’s always hard and I hope this honors her. 

Tiffany  43:24  

Thank you.

Transcribed by https://otter.ai

Dad Matt shares the birth story of his son Owen David at 26 weeks and his subsequent death a few hours after he was born. His wife Lori Ann had a cerclage put in earlier, but her water broke at 21 weeks. Lori Ann stayed on bed rest till 24 weeks and was admitted to the hospital so they could do everything medically possible to keep Owen alive.

She developed an infection and Owen was delivered by emergency C-section at 26 weeks. Owen was unable to breath on his own, and Matt and Lori Ann were able to be with him and hold him before he died.

Watch here (YouTube):

Listen here (podcast):

Time Stamps:

00:00 Baby’s name

You might appreciate these other episodes:

• Watch/listen Lori Ann’s (Matt’s wife) birth episode of son Owen: Click here
• Watch/listen to Lori Ann’s advice episode after Owen’s death: Click here

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Full Transcription:

Matt’s Story of Son Owen 

Matt Liddle  0:01  

My child’s name is Owen David. 

Matt Liddle  0:10  

I remember the moment he opened his eyes. There’s a lot of tubes and a lot of people but the moment he opened his eyes, they were just so precious. No surprise, he had a full head of hair. I thought he was perfect. He was something else.

Winter  0:30  

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  0:37  

And I’m Lee, we are grateful you joined us today. Please know that this is a story of loss and has triggers

Winter  0:43  

Thanks to our loss parents who are willing to be vulnerable and share their children with us.

Lee  0:47  

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  0:54  

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.

Lee  1:07  

Now Matt, please tell me about yourself. 

Matt Liddle  1:10  

Okay. So right now every day is a little different for me. I wake up feeling great and other days, and I wake up feeling extremely sad and depressed. On days I’m feeling down, it’s very hard to get out of bed, nevermind accomplishing anything. 

Matt Liddle  1:31  

Currently, I’m unemployed due to COVID. And to be honest, I’m not ready to go back to work yet, even if COVID wasn’t a thing. It’s hard to really truly accept what happened. I think I’m at that point now where I’m kind of dealing with it. I’m really finally allowing it to go through. 

Matt Liddle  1:55  

Before Owen passed I was actually living my dream job. I’ve had a pretty complicated childhood. And it’s because of things outside of my control and I have zero consistency in my life. So what better job to do than to find something to fix problems. You have a star consistency and training program. 

Matt Liddle  2:23  

So I started working in a pot room and a fragrance company is a very big company, but I just needed to get my foot in the door. I’m the kind of guy who thinks it’s not where you are in life, but it’s where you want to be. I just wanted to get my foot in and prove myself faster, multiple promotions, and I ended up working in the office as opposed to working in a union at the plant. I was figuring out ways to cut production time and at the same time saving the company money. So I felt great. 

Matt Liddle  3:01  

Yeah, so I was the first person in my family to graduate high school. So, me going anywhere for a job was huge. The main goal for my life was, oh, you’re going to be on welfare, just like your parents, and stuff like that. But I met Laurie Ann. She really changed my life. I felt like I could do anything and I wanted to give this girl what she deserves because I didn’t really feel like I deserved anything at all. 

Matt Liddle  3:36  

Push came to shove, I started doing very well and got a great job. I was actually in the middle of the interview when I found out that she wasn’t doing well. So I went home that night and her water broke. 

Matt Liddle  3:57  

We were actually sitting in the living room and do you ever see a look on the person you love’s face and you can just tell something’s completely wrong, but they’re kind of stuck in like shock? 

Lee  4:12  

Yeah.

Matt Liddle  4:12  

So I started trying to talk to her and she’s like, my water broke. At that point, we’re only 21 weeks. This is impossible, but for some reason my mind just went. I said go to the bathroom by yourself. In the meantime, I went and I packed the bag and I did all these things. Because we weren’t even to that point where you should have a bag and stuff. 

Lee  4:43  

Yeah. 

Matt Liddle  4:43  

So I kinda wasn’t thinking and the car ride down. I was just trying to make her feel better. I don’t know if it’s a man thing, or a husband thing you kind of just always want to make your wife feel better. Kind of put your emotions to the side. We finally got to the hospital. I felt like it took an eternity. But finally we saw a nurse. She did a swab and it came out the color blue. 

Matt Liddle  5:14  

I remember the color and everything she said,” I’m really sorry to tell you that your water broke.” The only thing I remember, which still haunts me, is just my wife’s face. She just put her hands on her head and said the F bomb. Like, that’s it. That’s all she could say. And she couldn’t move. At that point, I was in complete shock. I had no idea. What do you say? What do you do?  

Lee  5:43  

Yeah, there’s yeah.

Matt Liddle  5:46  

I mean, it was horrible. Then they told us that we actually had to wait until the next day to speak to a doctor. So we’re like–

Lee  5:56  

 Was this later at night? Where was it?

Matt Liddle  5:58  

Yes, it was later at night. It was I believe it was around one o’clock in the morning. Her gynecologist just wasn’t at the hospital. None of her team wasn’t at the hospital or anything. So that night, we’ll go back to talking about things that I don’t remember, because it was so stressful. I don’t remember what we did that night. I don’t know how it made it through that night.

Lee  6:24  

Were you at the hospital? Or did you have to go home?

Matt Liddle  6:26  

Yes. Okay. Yes, we were at the hospital at this point, because they said we want you to stay here until you could speak to your doctor and kind of come up with a plan. 

Matt Liddle  6:39  

So that night passed and the doctor came in and told us we had two choices, you have one you terminate right this second. Two, you go home and let your body naturally do what it does. So there’s no infection at the moment, and you’re not doing contractions, so you need to make a choice. 

Matt Liddle  7:09  

I mean, our world was upside down at that point, because we had done tons of fertility treatments. It took us our third try of IOI just to get pregnant. So we’re like, we’re not going to give up now we’re fighters. We’ve got to do this. Let’s find out the information on how it would go either which way. 

Matt Liddle  7:30  

So they said you can go home, let nature run its course, unfortunately, we couldn’t do anything for you here at the hospital, you’d have to go back home. We wouldn’t take you until 25 weeks. 24- 25 weeks, something like that. They couldn’t give us a real recommendation, because we were at that point where it’s possible that Owen will be okay. But it’s also possible that he won’t be whatsoever and he’s in a gray area at the age that he was in that they can’t say. 

Matt Liddle  8:11  

So it’s after talking that night, we decided there’s no way we fought too hard. We were going to fight for this. So we spoke to the doctors and then we decided to go home. The hospital doesn’t consider pregnancy viable until I believe 24 weeks. So we had to go home. 

Matt Liddle  8:38  

We live about an hour from the hospital and my in-laws live about 30 minutes. So we said we should probably stay at the in-laws, in case something happens. We want to get there as soon as possible. 

Matt Liddle  8:52  

Just to rewind a little bit, our main concern was that Owen wouldn’t be in any pain whatsoever. If we went forward with this, we do not want any pain. Clearly there is a chance he won’t be okay if he did survive. He wouldn’t be screwed completely. 

Matt Liddle  9:16  

So we went to the in-laws, we started staying there and trying to I mean, Lori Ann wasn’t possible at the time because she was to the point where she wouldn’t give you a hug because she feels like she would jinx it. For some reason. Her mom would say, oh, let me pet your belly, rub your belly and she’d say, No, I don’t want you to jinx me just like that. Like. So, clearly she was petrified. 

Lee  9:49  

Yeah.

Matt Liddle  9:49  

During all this I was working at my dream job. I started at the pot room and I worked my way up from an office worker to a trainer so it just kept going. At that point, I had to make a decision, be there for my wife, or work. Right? My wife, completely petrified. Neither of us had any idea what could happen if she went into labor at any moment or an infection. 

Matt Liddle  10:23  

So I decided, let me try to go the family leave route, spend as much time as possible with my wife. We actually ended up making it to the point of the baby being viable in the hospital’s eyes. So we ended up going back to the hospital. That was around. My wife’s gonna kill me if I say this wrong. So if I think we got back to the hospital at 23 weeks, they let us come back. Yes, twenty three weeks, and then we’re able to start the whole process of maybe saving Owen. We started antibiotics, so she wouldn’t get an infection and things like that. 

Matt Liddle  11:10  

At that point. My job was extremely busy, and they’re giving me ultimatums. Well, for myself, I had to be there. There was nothing, I don’t care if I lost everything outside those hospital walls. Nothing else mattered to me more in the world than my wife and my child.

Lee  11:32  

Yeah, yeah. 

Matt Liddle  11:33  

So, I ended up parting ways with my job. I wouldn’t take that back, I would have made that choice a million times. Because my wife’s my superhero. I don’t know how it is for you, but my wife is one of the strongest people I know. Anyone in fertility treatments, anyone who deals with this kind of stuff. They’re very strong people.

Matt Liddle  11:59  

I was literally watching her demolish into nothing. Because of the constant fear of being on bed rest, not being able to do anything. Like, I couldn’t do it. Like I had to be there. I had to sleep there. I wouldn’t even go home. I would sleep there. 

Matt Liddle  12:21  

The doctors would come in twice a day to do ultrasounds. It was the scariest point of my life. Anytime the ultrasound would happen, my heart would stop. He even thought my wife was completely fine, I was fine. No worries. But every single time my heart would just drop, like no feeling. I can’t even describe the feeling. I feel like the fear is worse than any fear in the entire world. It’s unbelievable. 

Matt Liddle  12:57  

So push came to shove after all this, I lost my job. I had nothing. I had nothing outside of work besides my wife and my child. We had to figure out a way to get through it. Everyday stuff.

Matt Liddle  13:16  

It was horrible because we were on bedrest for three weeks at the hospital before they were able to do anything at all or until Owen came. After this whole situation. I can’t get out of bed. Nevermind work or live daily. I don’t know if that answered that question fully.

Lee  13:46  

I just feel for you. That’s all I can say is I feel for you. 

Matt Liddle  13:51  

Yeah. 

Lee  13:53  

So you were able to make it to the hospital. After you were about 34 weeks. Did you say? 

Matt Liddle  14:01  

No. Only 24 weeks. 

Lee  14:03  

Oh, yeah. 24 sorry, 24 weeks.

Matt Liddle  14:10  

Then what happened was 24 weeks. 24 weeks was when we were allowed to go back to the hospital. That’s when they were able to put her on antibiotics and monitor her twice a day. 

Lee  14:25  

How long were you in the hospital with that?

Matt Liddle  14:27  

So we ended up going till she was 26 weeks pregnant. So we were there for four weeks. I slept on a cot next to the bed every day. I wouldn’t leave like I couldn’t leave–

Lee  14:47  

Yeah, your life is in that room.

Matt Liddle  14:53  

Exactly. Yeah, it actually got to the point where the nurses would leave and I literally taught myself how to read all of the equipment. I mean the heart rate. I knew where it should have been. I studied that thing. It was and it’s unbelievable how clueless you are, when you’re in these situations. I feel like it would help a lot. If you knew. I mean, you if you knew any of this stuff. If your baby’s heart rate is too high. If there’s an infection or, when you hear the nurses say these things, in medical terms, you can get confused. 

Matt Liddle  15:39  

They’re so quick in and out. You sit there clueless, and your mind just keeps going. So I had to learn how to read the computer. I just wait till they leave and read. That’s the only thing that maybe kind of helped me feel better. To see a normal heart rate.

Matt Liddle  15:59  

So I literally slept on a chair next to her for 26 weeks. 26 weeks came and she woke up in the morning, and she wasn’t feeling well whatsoever. I knew something was completely wrong. So we called the doctor in and within a half hour, they said that we’re going to have to go in for an emergency surgery. For a C section, the baby has to come out right now. 

Matt Liddle  16:34  

I was supposed to be in the room for the C section, but maybe an hour before they gave her medicine for blood clots in her legs. So she was going to bleed a lot. So they decided that, oh, let’s put her out. So they made me suit up. I’m sitting in the room waiting. Then the doctors come back out. They say I need you to come into the room where Lori Ann was ready, she had the gown on and the hat. She was already on the metal table. I spoke to her for two seconds. I said I love you and went into the hallway and waited for the C section. 

Matt Liddle  17:15  

When I was out there. I was just not a sensitive guy in the past. I’m not a very sociable person. But I just broke down in the middle of the hallway. Nurses came and hugged me and they’re asking me questions. I was just so scared because it’s still so early. 26 weeks is really, really early. It felt like an eternity. But I just sat in the hallway and I cried and I cried. 

Matt Liddle  17:53  

Then they came and got me. They said your son’s been born and he’s doing fine. He’s doing great. He wants to come back and see him. So I saw him. Going back to one of the first things I noticed about him was his eyes because he opened his eyes and he looked right at me. It was really nice. There’s about four or five NICU doctors there. There’s so much going on. The machines are going. Then you kind of step back and you’re kind of speechless.

Matt Liddle  18:28  

You still have no idea if your babies are okay. 

Lee  18:34  

Yeah. 

Matt Liddle  18:34  

We got the escort up the elevator and into the NICU. He seemed fine. Everything was looking good. So I decided it’s time to go downstairs and talk to my in-laws because I had called them to tell them to come. To tell them what was happening. I said everything seems to be fine, but I want to go see my wife. 

Matt Liddle  19:01  

Then the doctor comes downstairs and gets me and he says, “I need you to come upstairs to see Owen and I just need to talk to you about some things.” When I got up there, there was a heart doctor there and their stuff was all over him. His feet are everywhere. 

Matt Liddle  19:23  

I was so scared. This is one of the biggest things I regret. I was so scared because everything was going on. There’s so many machines and noises that I was just too afraid to touch him. I put my hand in there once and he grabbed my finger. But then after that, I was just terrified to touch him. That’s one of the main things where I feel so guilty because I could have spent more time with him than I did. Because I went to my in-laws and my wife.

Matt Liddle  20:02  

I was just too scared. The heart doctor was there and all these machines were going off. People don’t explain to you that stuff because they’re way too busy trying to save your child. What was happening was that his blood pressure kept dropping, and they couldn’t tell why. 

Matt Liddle  20:23  

So they told me that they were going to try some meds and I should go down and spend some time with my wife. If anything’s really bad, I’m going to have to come and get you in, we’re going to have to go talk to your wife and have your wife come up and see the baby. See, she had the C section. So we knew something was wrong, if they were gonna come and get her to look at the baby.

Matt Liddle  20:45  

About two hours go by, and we get a knock on the door. It was the doctor, and he pulled me outside and said I’d like to speak to you about what’s going on. He said, listen, the blood pressure medications not working. it’s really not looking good. You might want to think about getting your wife upstairs. 

Matt Liddle  21:07  

So we went back to the room together. And when my wife saw the doctor, he said “I really want you to come upstairs to see your child.” I’ll never forget that look on her face. She just looked terrified, like completely terrified. 

Matt Liddle  21:31  

We went upstairs. They told us that there was really nothing they could do for the baby. The baby’s heart was checked so the only thing we can do at this point is take them off the ventilator and hold them until he goes. So my wife grabbed him. I’ve really regretted not holding him more and stuff. But I was just so scared.

Lee  22:06  

You probably felt lost too, scared and lost. 

Matt Liddle  22:10  

Very lost. Yeah, it was. It’s an experience that you wouldn’t wish on your worst enemies. My wife and I have been through a lot together with a lot of things. She has always been my superhero. Just to see her so broken. On top of watching my child pass away. 

Matt Liddle  22:41  

I mean, I don’t know how people are always worried about the women, but I don’t know how the men survive it to see the person. I mean, at least in my relationship, the person that means more than anything to me just collapses. It was very hard to take that in.

Lee  23:04  

Yeah. 

Matt Liddle  23:04  

I mean, it was really bad. It’s like, I’m speechless about this whole situation. Like I just shut down. I really don’t know. Because it’s like one of the hardest things that anyone can go through in their entire life. 

Matt Liddle  23:21  

I know on the paper it says what’s your hobbies and stuff? I used to love going fishing, playing with my dogs. I used to love life and now my hobbies. I mean, my hobby is nothing. I mean, not doing anything whatsoever. 

Lee  23:44  

You lose yourself. 

Matt Liddle  23:45  

Exactly. Yeah, yeah. You really do. You really find it. There’s like no words. 

Lee  23:56  

Yeah.

Matt Liddle  23:57  

I’m really not now, did your wife have a C section?

Lee  24:02  

No, no she had a vaginal birth with our son, Brannan. He was ready to go. When he passed away he was– with our first daughter with our firstborn we had a C section. But with our son Branna, he was born vaginally.

Matt Liddle  24:21  

No doubt that as a husband part there. I don’t know. So for me, when she comes home, she can wash herself in the shower and stuff. I handled all of that. The lactation and stuff. I mean, that destroyed me watching her go through that.

Lee  24:45  

It is such a cruel– the body after it’s such a cruel trick that that the body plays on the woman because–

Matt Liddle  24:53  

–Horrible

Lee  24:54  

Yeah. It really was painful to watch my wife and I’m sure it was painful for you to watch your wife have to go through all that. And nobody tells you, nobody tells you about it. Nobody tells you that the body still thinks that there is a child, even though the brain knows that your son has passed away. 

Matt Liddle  25:16  

Yeah, it’s cruel. I can’t believe it. I’m helping her shower, and she’s lactating. Up to a week, two weeks later. I mean, it went like eight, nine weeks. It’s cruell. It is horrible. It’s just a reminder that your son’s not there. You’re alone. You went through all of this to be alone right now. 

Matt Liddle  25:44  

I mean, I know he’s there he’s in–. I’m not a very spiritual guy at all, but I’m trying to learn to say that he’s here with us, or he’s in the sky or in heaven. Just because it’s cruel. Like, it’s, I don’t know, how do you? How do you put that into words? Like, how do you watch your wife go through that alone? I mean, not alone, but how do you? We’re men. We hurt. It really hurt her. It affected us. 

Matt Liddle  26:20  

I mean, for me, at least it killed me. But I’m not the one to carry that baby. I’m not the one who had to deal with lactation. And all the complications that come from the C .

Lee  26:34  

Post recovery and post op recovery.

Matt Liddle  26:37  

It’s terrible. Like, did that kill you as well? was that like?

Lee  26:43  

Yeah, yeah, it really, it really was one of those. I felt absolutely helpless and worthless as a man, as a husband, and as a friend to my wife, because there was nothing. I can make her as comfortable as possible. I can bring her anything, but there was nothing that I could do to alleviate her pain. And her and yeah, it really was just, it shattered me as a man. It killed me. It killed me as a man.

Matt Liddle  27:19  

And do you ever feel like you’ll pull yourself back up from that if I don’t know if I do?

Lee  27:26  

No. It’s both a no and a yes answer. Am I able to recover? No. Am I able to learn and change? Yes. Because what happened after the birth of our son? What happened after the death of our son that destroyed everything up to that point. And after that point, I had to rebuild. And I lost my son. My family is different. My relationship with my wife is different from what it was. My relationship with friends is different than what it was, was I able to recover? No, was I able to build new? Yes, I didn’t want to be the same person I was before. 

Lee  28:21  

I wanted to be a different person. And I’m able to start laying the foundation for the type of person I want to be and the type of person I need to be for my family. And like you said, the most important thing was my wife, and my daughter. For you, it was your wife, your wife was the most important person for you. And I had to change for the future. I couldn’t just be the same person with a different experience. I had to be a whole different person. I had to change, I had to be destroyed, I had to hit bottom and then forget who I was before, and go forward as an end build new. 

Lee  29:11  

Was able to recover? Yes and no. And I hope you are able to find what helps you. Because you’re a different person now than you were a year ago. 

Matt Liddle  29:26  

Oh, yeah. For sure. 

Lee  29:28  

You can’t be the same guy you were ten years ago, five years ago, three years ago. 

Matt Liddle  29:36  

There’s one who asked me what’s wrong. And I say have you ever felt a pain that you can never imagine in your life that you would actually survive? No, not really. But then don’t ask me that question. Because you wouldn’t really understand my answer.

Lee  29:55  

Because I’m feeling it every single moment of my life. 

Matt Liddle  29:58  

Yeah.

Lee  29:59  

Like you are feeling that pain that you never could have imagined every single moment of your life.

Matt Liddle  30:08  

Now we’re starting fertility treatments again very soon. Because it took us a very long time to even get pregnant. We got Owen when we had two failed IUI’s, and the third one actually worked.

Matt Liddle  30:29  

So, now we’re starting this whole thing all over again. But it’s gonna be in vitro. It’s kinda like, for me and I’m sure it’s like this for a lot of people, you feel like you would never ever survive something like this again, right? 

Matt Liddle  30:49  

But there’s where I’m wrong,  because I don’t know if I’ll have to survive this again. I’m assuming that I am. Because it happened in the past. I can’t I can’t think like that whatsoever. But it’s very hard not to. Because of everything, and to be honest, the scariest time of my life. 

Lee  31:14  

Yeah. 

Matt Liddle  31:15  

I mean, I lost my brother, my father, and my son, all within a year span. A year well over two years span. I don’t think I know how to explain it. It’s just like, it’s just being there bringings back everything, really rehashing everything. Even if you had someone to talk to, you’re not really talking to somebody unless they’ve exactly lived through it because they truly don’t understand whatsoever.

Lee  31:59  

Even though our situations are similar. They are light years apart. I can never fully understand what you’ve gone through. Nobody can truly understand us. 

Matt Liddle  32:10  

No. 

Lee  32:10  

Nobody. 

Matt Liddle  32:11  

Unless I mean, unless you can understand them. Because you can understand that pain. You, yeah. 

Lee  32:20  

It’s one of the– there’s the word empathy and sympathy, and I’m not good with which one means which. One means I can imagine what you’re going through. And one means I know what you’ve gone through. And because I’ve gone through what I’ve gone through, I think I can better understand what you’re going through. It’s not that I’ve had this same situation as you. We’ve had similar situations. I cannot try to help you. And you because you’ve gone through your situation. You can understand my situation a little bit better. 

Matt Liddle  33:04  

Yeah.

Lee  33:05  

Is it a perfect understanding? No. But they’re a lot similar. 

Matt Liddle  33:12  

There’s respect there. 

Lee  33:13  

Yeah. Respect. Yeah. Respect would be a good way. But yeah, it 

Matt Liddle  33:20  

I’m not good at talking. 

Lee  33:25  

Yeah. And it’s such a loaded reminiscence. When you talk about your son Owen. When you talk about his situation like his life and his birth and his death. I’m sure you want to shy away from stuff I’m sure you want to not talk about because I’m in that same situation, especially a year out from the birth of my son, Brannan. And his death. I didn’t want to talk about it. I sort of had to force myself to, it’s no fun no matter what. 

Matt Liddle  34:01  

No, not at all. 

Lee  34:04  

Going back to when the doctor came and got you and your wife. And he said that. Owen– and it’s not looking good for Owen. And they took him off of life support. And you got to be with him. How long did he live after being taken off of life support?

Matt Liddle  34:25  

Actually I mean, he wasn’t breathing on his own whatsoever. So they gave him phenytoin. So basically, we wouldn’t see him struggling for breath and all that. But now this is hard for me to tell you i

Lee  34:45  

If you don’t want to talk about it, don’t. 

Matt Liddle  34:47  

No, no, no, no, no, I do. So, now again, everybody’s different. Now he’s not living anymore. And the woman and my wife are talking about, Well, why don’t you bathe him and change him. I remember at that moment, like, he’s gone. 

Lee  35:18  

Yeah.

Matt Liddle  35:21  

The worst part that kills me is I look at my wife, and she’s gonna be the most amazing mother in the world. She’s so caring and loving. I remember the first words, the moment she saw him, she looked at me and said, he is perfect. Yes, he was perfect. But she was able to hold him, change him, bathe him and do all these things. I’m looking at her like, wow, I would never, in my wildest dreams, be able to do that. 

Matt Liddle  36:11  

I’m just watching you do it. I mean, we don’t give women enough strength. I mean, and same thing with men, like, none of my friends really know how I feel. They don’t really care. They have their own problems, they may care, but they don’t really know how much it does affect you or your wife. 

Matt Liddle  36:41  

I’ve heard things where people said, well, other women? Well, I’ve had a C section, I’ll see what the big deal is. I don’t know why it’s so hard for them. Yeah, but you have a reason to make it through all of that you had your C section, you have your baby there. You’re not waiting for your breast to get rock hard. So your milk will go away, you have no one to give the milk to. It’s unbelievable.

Lee  37:12  

Yeah.

Matt Liddle  37:12  

If you’re not a part of this club, which I really don’t want anyone in this club ever, you would never truly understand the pain that people really endure and what people have to go through just to have a child. Then you see all these people pushing out all these kids and having all these kids and it’s just like, It’s unbelievable. How is that fair? That’s another big thing I always go back to. It’s not fair.

Lee  37:46  

Yeah, it’s not fair. It is, and people will always say, well, life isn’t fair. But it just seems like such an injustice to me. But yeah, and there’s nothing I can do to change that injustice. 

Matt Liddle  38:02  

No.

Lee  38:02  

 It is, it is what it is. But it just doesn’t. It doesn’t seem fair.

Matt Liddle  38:08  

One thing that I do really need help with is, how did you swallow your fear and everything and try again? Was your mind in a place where you weren’t scared at all that nothing would happen bad, or like I don’t? It’s hard to get going again. To try to have a kid.

Lee  38:35  

Yeah. Now, because we were about two years out before we started trying again. 

Matt Liddle  38:45  

Okay.

Lee  38:46  

I was scared. I was anxious. I was everything. I was apprehensive. I was scared. I was fearful. But we had a real, honest discussion, my wife and I, about what we want our family to be? Because we have an older daughter. We have our son Brannan. Are we okay, as a family like that? And yes, we were okay. As a family like that. 

Lee  39:24  

Then we discussed well, do we feel that we should? Because we are religious. Do we feel that we should add another member to our family? We’re not talking about whether we should add 15 more members to our family. But should we add one more? And there really was some serious internal dialogue. 

Lee  39:52  

There was serious communication between my wife and I. There were a lot of sleepless nights. Just pondering and praying and hoping that there some sort of enlightenment or some sort of prayer was answered. I felt that as a family we should have another. No, it wasn’t like, Oh, we should not have a child. I think we should try.

Lee  40:19  

We gave ourselves– because we had infertility issues as well. We said well let us try and we gave ourselves X amount of months, let’s try this amount of months.We were seeing as fertility specialists and so it was like if it doesn’t happen within this time, we’re okay. We’re okay if we don’t have a child. But if it happens, we’re okay if we do have a child, and there’s all sorts of fear. 

Lee  40:57  

You know Matt you’re going to feel it, you’re going to feel all sorts of fear and happiness, you’re going to feel hope. You’re going to fear you’re going to feel like I said, you’re going to feel everything. You’re going to feel good, you’re going to feel bad, you’re going to feel happy, you’re going to feel sad, joy and hate and rage and anger. But you’re going to also feel that good side as well. You’re going to see a child growing, you will feel everything good and bad.

Matt Liddle  41:33  

Now that old pregnancy where you completely freaked out, it was gonna happen again. Or was there ever a point where you kind of calmed down and were like okay, I think we’re okay. 

Lee  41:46  

Nope, I was a mess the whole pregnancy. So, yeah, it really was just a belief that my wife, my wife’s body can do what it needs to do. My wife tried her best to be healthy. We tried our best to eat healthy and exercise. We’re not Olympic athletes by any means. We’re not even amateur athletes by any means. 

Matt Liddle  42:17  

But you’re trying. 

Lee  42:19  

Yeah well. Sometimes some days, some days we’re trying. But we were like we will do the best we can to give my wife’s body the best nutrition. I made sure she went to bed. I made sure that she–

Lee  42:41  

You know what I have a problem with when she says it’s because of my body. This happened. I get angry. 

Lee  42:50  

Yeah. It’s nothing that can really be blamed. It’s not her fault. It’s not your fault. It’s not. It just happened. It sucks. It sucks. It’s unfair. It’s just the worst. But it’s hard to stop thinking like that. Because we naturally want to say we naturally want to have something that we can point to as being the problem. When there’s not a problem, it’s easy to internalize it and say it was my fault. 

Matt Liddle  43:28  

Yeah. 

Lee  43:29  

But in all reality, it was nobody’s fault. It just, it just happened. It just happened. And it sucks. It’s the worst thing to ever happen. But it just happens. That’s all we could really say it sucks. It’s just the worst.

Matt Liddle  43:51  

You kind of feel robbed he was in our arms, he was there.We were right there. 

Lee  44:00  

You were approaching the finish line.

Matt Liddle  44:04  

So, you don’t know what to be. Or you are all of the things your emotions are angry, sad, like, unreal. Yeah.

Lee  44:18  

I love how you put it. You don’t know what to be, but you feel all the emotions. Like you don’t know if you should be angry or mad or sad. I felt guilty for a long time laughing and enjoying myself. Because I shouldn’t feel that my child is dead. I shouldn’t be. I shouldn’t be laughing. I shouldn’t enjoy anything but you do feel all the emotions and there’s a time and place there’s a time to feel joy. There is a time to feel happiness. And there is a time also to feel anger and there’s a time to also feel sadness. So–

Matt Liddle  44:59  

–It’s kind of you’re a prisoner of your own mind. Because you can go out saying what, I’m gonna be a good, it’s gonna be a good day. But then you go down to the store and you walk past the baby section and you’re not having a good day anymore. 

Lee  45:15  

It turns it upside down. 

Matt Liddle  45:18  

Then there’s nothing you can do. I mean, you can’t avoid it. How do you deal with it? What is he dealing with? You can’t really deal with it. I don’t know. It’s just like, I feel like that will never go away. Never always feel like a prisoner of my own mind. Because I could be in the happiest mood. I could be thinking this, but if I see something, it’s over. 

Lee  45:46  

Yeah.

Matt Liddle  45:47  

It goes right to it. Are you able to, like get back and function to like your normal life duties right away?

Lee  45:55  

No, no, not not right away. It does take time. There’s that adage that time heals all wounds. But it leaves scars. Time does heal wounds, but they leave scars. 

Matt Liddle  46:08  

That’s very true. And they’ll always be there. 

Lee  46:10  

Yeah, like I’ve, I’ve broken many bones in my body. And I still have issues with those broken bones. Did they heal fully? Did they? No, some of them didn’t heal fully, but I’m functioning. Am I whole? No, I am not whole, I am not whole after this, this tragedy. But I am able to continue on. 

Lee  46:38  

It took a long time for me to be able to continue on. Because there were times that I just wanted to stay there and just stay in that pain and in that sadness, and in that grief. But there is just like a bone mending after being broken. After a time it will be able to support what you need to do with it. 

Lee  47:03  

So it was with me and my emotions and me with my ability to exist. I was able to finally say I can. I can exist. It takes time. That’s all I can say. And it hurts. It hurts. It’s lonesome–

Matt Liddle  47:25  

The man never gets the support. 

Lee  47:28  

No.

Matt Liddle  47:29  

Like a woman does.

Lee  47:30  

No. Yep. Yep. Everybody will ask you how it is? How’s your wife doing? Yeah. How’s Lori Ann? How’s Lori Ann doing? In all reality it’s how both of you are doing. When somebody asks how your wife’s doing, how is she holding up?

Matt Liddle  47:47  

No one, no one cares about the husband. The father.

Lee  47:51  

Yeah, society doesn’t realize that we lost as well. 

Matt Liddle  47:56  

That’s right. I lost my son. I lost my son, but it was completely different with our first miscarriage. I didn’t hear the heartbeat. My wife did. But I didn’t. You know that. And I don’t have any problems with that. But I had that boy in my arms. I’ve never had a father in my life. Bad, bad dude. 

Matt Liddle  48:24  

I was just so excited to just do everything I missed as a child. Getting older, I just want to be able to have a relationship with a child. I watched a movie the other night, and they’re talking about living and dying and faith. The man says, I only want to live at least another 30 years ago. ” The guy asked him, “What the heck are you going to do in those 30 years?” and he says, I just want to see my children grow up. That’s all I want in my entire life. I just want to see them grow up. 

Matt Liddle  49:09  

We’ll never get that chance. It’s really sad. I mean, I hope I do get the chance to have my own children. I’m very blessed that I have someone who’s extremely strong and brave, just even doing the show. 

Matt Liddle  49:28  

In a way. I don’t know if this is part of the advice, but I’ve been avoiding these feelings. I haven’t dealt with anything. I mean, I haven’t slept in four days because of this podcast. Because the reality of it is I’ve been pushing it all to the side. So I can help everybody else. But now when I get home, I’m writing 15 pages on what happened. It changes everything. Even having these pages, I couldn’t read them, right? And it’s unbelievable.

Lee  50:10  

I hope you were able to find something that can help you. I was in that situation, too, I did not want to address many things that were going on with me. Like you said, I push them, I push them back, I push them to the side. They kept piling up. When I was able to actually address them, everything just crashed down. Then I was able to work through them. I hope you were able to find something that you can do to help you. 

Matt Liddle  50:44  

It helps you remember a lot that you really don’t remember. You kind of feel when you’re in the hospital for a couple weeks. Thinking back at the situation, I felt really alone. But then kind of being forced into the situation to look back and think about everything. I realized that I really wasn’t alone. Your mind kind of plays tricks on you too, as well.

Lee  51:15  

It’s very selective. Your mind is very selective. Yeah.

Matt Liddle  51:19  

Exactly. I feel like my wife said, this podcast helps a lot and helps people and I’m like sitting here writing. How and possible, can this help somebody? I’m the kind of person that tells you your story. I’m gonna take that home tonight, like tonight, I’m gonna feel your story because I’m that type of person. 

Matt Liddle  51:46  

Besides your story, me carrying anything and everything out of my head kind of made me feel a little better. It made me feel like, okay, somebody is actually listening. That’s the same shoes as I am. They kind of understand my situation. There is a big difference between females and males, when it comes to situations like this, especially emotions. 

Matt Liddle  52:18  

You can’t really go to your best friend crying as a man, right? I mean.

Lee  52:23  

Yeah. 

Matt Liddle  52:24  

This is one of those situations where you can’t do it alone. But you can’t do that with your wife, at least in my situation, because my wife is so far more advanced than I am in here. She got mad at me one day, because her home screen is Owen. And I’m like, she wanted to show me pictures. I said, I can’t look at that right now. Like, I’m sorry. To her, it was like, You can’t look at your own child? What the heck is your problem?

Matt Liddle  52:54  

But it’s not that I can’t look at my own child, it’s just that I haven’t dealt with the whole situation in general. It’s like avoiding it. I can’t, because I’m too afraid to deal with it. Because I don’t want to feel that pain even more right now. It’s like, you just don’t want to feel pain whatsoever. 

Matt Liddle  53:18  

Then you do learn by talking and stuff like that. The only reason she’s doing better is because she is talking and she is remembering every day. But it’s hard to realize that. Even just to find someone to talk to. I’ve tried to find people to talk to, but everyone’s busy, everyone’s got their own stuff and COVID. 

Matt Liddle  53:43  

When we got discharged from the hospital, COVID the day we left, the hospital stopped taking visitors. So, we’re grieving our child, but then we came out and now we’re grieving our life. Because now we’re like, what happened in the last month, like, where are we? Everything changed. 

Matt Liddle  54:08  

Then we tried to start looking for support groups and they weren’t around because you can’t meet in person. Then time goes by and you don’t even want to do that anymore. I feel like this is where people make a lot of mistakes if they don’t swallow their pride, put everything to the side and really let it out. Talk let’s figure out how to feel better and how to remember your son but not feel so terrible.

Lee  54:47  

Making yourself vulnerable is such a hard thing to do. That’s what this is. What we are doing as when we are reflecting on our sons when we are reflecting upon the situation. We are completely vulnerable. Because we are on the cusp of breaking down we are on the cusp of crying, and just breaking down and becoming vulnerable to our friends to our family to, to random strangers is, it’s hard to do.

Lee  55:23  

It wasn’t until I started seeing a professional therapist, and I felt I could break down in front of them. They weren’t going to be there to judge me. They weren’t there either. Yeah, I was paying. I was paying the therapist to listen to me. But I honestly felt that, that my therapist, that she was there, and she genuinely felt concern for me. 

Matt Liddle  55:51  

Were you that kind of guy that would never do something like that before?

Lee  55:54  

Yeah, yeah, it took a long time for me to go actually, to a therapist. There’s, I don’t know, I’m sure New York has grief support. Like, in Utah, there are two grief support groups, shared by parents. Then like, Oh, I can’t remember exactly what their names are. But they’re now starting to meet online, because we still can’t meet in person. But they have just a monthly meeting where parents who have suffered loss can come together.

Lee  55:57  

Winter and I started going to that. There were a lot of mothers there. But there were a couple fathers there too. It was good to see. I’m a dad, he’s a dad, we’ve both lost. We don’t necessarily have to talk to each other. But it’s good to be in the same room. It’s good to be in the same video chat. Yeah, it’s hard. It’s hard because yeah, you do feel alone, you do feel abandoned. You do feel forgotten. Nobody does ask you. Nobody. Nobody does ask the Father. They always inquire about the mother. 

Matt Liddle  57:13  

Exactly. Right. 

Lee  57:14  

But what’s,–

Matt Liddle  57:16  

You’ll never get a random text message. Maybe we saw your own mom in general, your own mother. Oh, hey, how are you? Okay, today with Owen ? In the meantime, the wife’s got about 45 contacts that are like, Hey, are you okay? 

Lee  57:35  

Yeah. And it really is. My wife is part of a loss moms group that gets together once a month for dinner. Before COVID they were really religious about getting together for dinner. They would text each other. During COVID, all of a sudden, instead of texting each other three times a day, they’re texting each other 50 times a day. I haven’t received probably one more than 10 texts ever. Yeah, it’s hard for us because we’ve lost too. We’ve lost too.

Matt Liddle  58:16  

That is so true. When I met my wife, I was in a time where I felt so alone to begin with I had nothing and nobody. You meet this woman who literally just transforms your life and makes you see life in a completely different way. It’s absolutely amazing how one person can completely, completely change your life. One person, and I’m kind of hoping that this podcast is that one person. That helps me like, my ego stuff’s got to go away. I got to go and get help. I need to talk to somebody because it’s just, you can’t do it alone. 

Lee  59:13  

No, you can’t. 

Matt Liddle  59:14  

And you can talk to your wife. But

Lee  59:17  

But your wife, you’re together. 

Matt Liddle  59:20  

Yeah. 

Lee  59:22  

It’s sort of one of those you, you and your wife are one entity. So it’s not really you’re talking to other people you’re talking to–You’re talking to each other, 

Matt Liddle  59:34  

Yourself. 

Lee  59:35  

Yeah, basically yourself. 

Matt Liddle  59:36  

Yeah, definitely. 

Lee  59:40  

Of course, and I’m not trying to downplay the help your wife gives to you or the help my wife gives to me. But getting an outsider to help you is different too. So.

Matt Liddle  59:54  

Yeah, because even different grieving processes. She may be headed towards me and I say something else. It really bothered me, I’m not ready for it. And she’s like, what the heck, and then you kind of feel like shoot. She’s so ahead of me and I’m like, dang. It started to get you going so like, you’re you do need that outside person that isn’t dealing with the same exact situation with you, with your baby. And they’re further along with the grief and grieving process, because she may not.

Matt Liddle  1:00:34  

You may get into a fight, because she may not understand the way you’re feeling. She may say, You’re not crying right now, you don’t care. But no, that’s not right. It’s just you’re grieving, here me, I saw this. But now I’m thinking about the Dallas Cowboys. I’m thinking about my football game, because I’m too afraid to think about what you’re thinking about. It’s not that I don’t care, but we’re just two completely different stages. 

Matt Liddle  1:01:03  

I feel like it’s so important to talk with your partner to talk about different grieving stages, because I may be really pissed. I may be really angry when someone says something about Owen or something. And she may not be and she may not understand because I’m in a different grieving spot. Yeah. And if you have that outside person, they’re not grieving for you. So you’re gonna get what you need to hear. Then my wife has emotions, and she feels hurt when I say things because she thinks maybe I’ll think you don’t care about your child, because you’re not crying. Well, no, I care so much that I can’t even dream about thinking about it, because I’m going to cry.

Lee  1:01:54  

The grieving process and how different people grieve it’s so different. Going back to, right after the birth, and when we were discharged from the hospital, I was a man on a mission on how to, I had to find a burial plot. I was up in the morning, I was doing everything I could to plan the funeral. Once that funeral was done, I was lost again. Then it, yeah, there was no purpose. But when I have a purpose, I’m a man on a mission. My wife when she has a purpose, she’s and we’re just in two completely different spots, because she was able to do this. I was able to do this. And it really is like, people mourn differently. People mourn at different rates. People feel things differently. People process those feelings differently. It’s hard to say, well, I’m here, you should be here with me. Because we’re not the same. 

Matt Liddle  1:03:05  

No, no, and we could have been to the same thing at the same exact time. And we still can be in different places. Everybody’s body is different. I mean, my wife actually gets physically sick, physically, when she gets overwhelmed with stuff with Owen. I mean, everybody is so different. 

Matt Liddle  1:03:31  

I feel like that’s why it’s so hard to talk to people about this situation. Because everyone’s all over the place only like you, you can talk about these things, right? You’re on the podcast, you’re moving forward. Me? I’m starting to read a piece of paper and I like passed out. I gotta call the cops. Cause it’s like the fear stills you is unbelievable. I’ve seen a lot of bad things in my life. I’ve been in a lot of bad places growing up. I’ve had a lot of bad things happen. And nothing compares. 

Lee  1:04:16  

No.

Matt Liddle  1:04:17  

Nothing. Nothing. I had a gun shot at me and my friend at the same exact time we kind of did the same thing. I mean, it was a little different. Something like this was the pain that is so embedded in your heart. It’s like, I don’t know. The sad part is if you’re not a part about this club. You really have no idea about it. You don’t really know what these people go through. Yeah, they lost their son. 

Matt Liddle  1:04:50  

I had someone say9 to me, just recently it’s been a year since you lost your child and you’re going on this podcast Why? Are you ever going to start moving on? And I was taken back, like, moving on? What do you mean? When are you going to start preparing for your future? Well, listen, I’m trying to prepare for my future. This step is a step forward for me. 

Matt Liddle  1:05:23  

I’m sitting here with you right now talking to you about something that, honestly, I couldn’t say two sentences without breaking down. To me that’s positive. That’s gaining. I’m gaining. I’m getting better. Yeah and people somehow still want to judge you where you’re at. That has never been in the situation itself, and they can’t truly understand. It makes it even harder. 

Matt Liddle  1:05:51  

Because as a man, you feel even more alone. You’re like, wow, stop being a punk. It was a year ago. I understand that, but I can’t help it. I can’t help that I had the worst childhood of my life. I had a really bad childhood.All I’ve ever dreamed of was doing homework with my child throwing a ball with my child. So, when I found out I was having a boy, I was just like, Whoa! This is the best. I get to do everything that I missed out, like GI Joes. I didn’t do any of that stuff. The only time I’m gonna be a kid again. I’m all Yeah! There’s so many different emotions.

Lee  1:06:39  

Yeah. Losing a child is not like having a bike stolen. Yeah, you could easily get over a bike being stolen, you could easily get over having your car break down. You can move on from those things. Losing a child is losing dreams. It’s losing. Like you were saying that you thought of being able to play with your child to help your child. You’re losing all that you’re losing a future.

Matt Liddle  1:07:08  

That is right. Yeah, you plan for your future. That’s part of your plan. You’re gonna have a child. So you’re looking at your future like it’s ruined.

Lee  1:07:17  

Yeah, you’re not, you’re not losing your whole future. You’re not losing the future. You’re losing a future. 

Matt Liddle  1:07:25  

Yeah, it is. I wish more people would understand that we have feelings too. We’ve had people ask us like, Oh, I’m gonna put it in a– and it was on Owen’s birthday. We got a message. Oh, I’m gonna put a pregnancy announcement out. Is that okay? Why are you asking me? That’s your life’s dreams and your dreams. My dreams are completely different. 

Matt Liddle  1:08:01  

People treat you differently. They don’t know how to act around you. Even family get quieter. They don’t know what to say to you. Some people think they can relate to you by saying Oh, one of my friends just lost their child or all these things. Well to me what bothers me is why can’t we go back to the way things were before. 

Matt Liddle  1:08:32  

The thing will never go back to before, but with all input the relationships with I had my say. Let’s say my mother and father in law are some of my old best friends. It seems like it never went back to normal. They look at you like you’re a damaged goods and they kind of are afraid to talk to I guess, I don’t know.

Lee  1:08:56  

It really is one of those people don’t know how to react and interact with you. Not with you, you but with us, people who have lost. Because they don’t know, is this a topic we could talk about? Is it a topic that’s going to cause you stress? Like you said, sometimes you just want to have a normal conversation. But sometimes people don’t know how to do that. I often just say these friends were friends that I had good friendships with. Now that has changed. I have to realize I am a different person and they are a different person. It’s sometimes hard to see those things disappear. Those friendships disappear. 

Matt Liddle  1:09:47  

I’m sorry. Still the same person just a little damaged.

Lee  1:09:52  

I wouldn’t say damaged. You’re changing. Sure you are training, you’re not damaged.

Matt Liddle  1:09:59  

True.

Lee  1:10:00  

You have gone through something so traumatic, you have gone through something that has shaken you and destroyed you. You are trying to rebuild who you are, and understand who you are.

Matt Liddle  1:10:14  

But how can you do that when your whole past? Everyone around you doesn’t treat you like who you are? 

Lee  1:10:22  

Yeah, yeah. And sometimes you just have to just say, this is what I want to be. And this is how I need to be. And this is how I will be. Sometimes it’s hard to make your body do what your mind tells you to do. And sometimes it’s hard to tell your mind what your body needs you to do. So sort of one of those circular logics, we could talk for, who knows how many more hours? It’s probably getting late back on the east coast. I don’t want to hold you hostage for the rest of your life.

Matt Liddle  1:11:02  

No, I mean, I just want to appreciate you guys for being so strong and brave, because that’s another thing with my wife. That shows me each time she talks about Owen or anything that has to do with child loss and stuff. To me that is teaching me something. I’m looking at her and saying, Wow, she’s strong. She is so brave, but she’s got no clue that she’s strong and brave. You could tell her all the time. 

Matt Liddle  1:11:34  

I just want to thank you, because it takes a lot of courage, acceptance. It’s a lot. I don’t know how long exactly how you’ve been doing this before. But I’m sure it’s a lot coming on all the time and speaking about your story and talking about it. I commend you guys. And if it wasn’t for people, like you, people like me wouldn’t get any better. You’re setting the examples of where I can learn where I could be okay. I’m not alone. I just need to meet the right people and talk to the right people. Maybe I’m not this screwed up for the rest of my life. It gives me a kind of hope that I’ll be okay. So, thank you for real man. I mean it.

Lee  1:12:31  

Matt, this is the reason why we set this podcast up so that we can reach out and together talk about our children. And through that talking, we can heal a little bit, we will be able to help those around us who are also struggling. Right now, you might not feel that you can help anybody who has also suffered, but in the future, you will be able to. You will be able to say hey, this has happened to me. This is what I have done. I hope my experiences helped a little bit.

Matt Liddle  1:13:05  

Yeah, like I said, you guys are amazing.

Lee  1:13:11  

Well, Matt, thank you so much for talking with me. Thank you. 

Matt Liddle  1:13:16  

Thank you.

Transcribed by https://otter.ai