05: Jan’s eclampsia and Alice’s birth, necrotizing enterocolitis


In this birth story podcast interview, mom Jan tells how she developed eclampsia at 32 weeks pregnant with her daughter Alice and delivered her via emergency C-section. Because Alice was premature, she was diagnosed with necrotizing enterocolitis (NEC) and died 55 days later due to complications of NEC.

Painting Jesus Christ holding and looking at baby Alice
Jesus Christ holding Alice (Art by Megan Warren, commissioned by Jan and Scott)

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In this episode, Jan tells us:

  • A little bit about herself and her husband, Scott
  • How her pregnancy was rather uneventful up to 32 weeks
  • That at 32 weeks, her vision started tunneling, which was a sign of eclampsia, and went to the hospital, where she started seizing and delivered Alice via emergency C-section
  • How Alice did in the NICU
  • When they got to bring Alice home and her personality
  • When Alice was brought back to the hospital due complications of necrotizing enterocolitis and died within 24 hours
  • About Alice’s funeral

Listen to all of Jan’s and Scott’s episodes:

Listen to other stories of infant loss:

Full Transcription

Introduction:

Jan 0:00
Alice Michelle

Alice was very good. She had a goodness that I could feel from her.

Winter 0:21
Welcome to Still A Part of Us, a podcast where moms and dads share the story of their child who was stillborn or who died in infancy. I’m Winter Redd and on this episode, Jan is telling the story of her daughter Alice, who passed away 55 days after her birth due to complications of necrotizing enterocolitis.

As a word of caution to our listeners. This story contains emotional triggers of stillbirth and infant loss. Please keep yourself emotionally and mentally healthy, and seek help if needed. Also, be aware that these birth stories may differ from his or her partner’s, as these accounts are told from their own perspective, through the lens of trauma, heartache, and the passage of time. Please respect our moms and dads who are brave and gracious to share their children with us.

About Jan and her family:

Jan, thank you so much for coming on today. Can you tell me a little bit about yourself, who you are, what you do, what you did on a day to day basis, especially, especially at the time when Alice was born? And you can mention what you do now if you want to. But I’d love to know what your day-to-day kind of looks like.

Jan 1:38
Sure. Thank you. So I’m a social worker. And I’m working now in the same position that I was then, working full-time doing medical, social work, so it can be pretty intense, working a lot with patients and their families.

Winter 1:55
That’s got to be tough, huh?

Jan 1:56
It can be, yeah.

Winter 1:58
And any fun hobbies or anything that you guys like to do in your free time?

Jan 2:02
My husband is the hobbyist. I’m the lazy person. And I kind of go along with whatever he’s doing.

Winter 2:08
Oh, okay. That’s good.

Jan 2:10
Music. TV. Yeah. Yeah. All of it being with family.

Winter 2:15
Well, that’s cool. And where are you guys based out of city wise or state wise, for context?

Jan 2:22
For sure. We live in Sandy, Utah, so just a little bit south of Salt Lake. And that’s where we were living at the time of the birth. And that’s still where we live.

Winter 2:33
And also, once again, for context, how long ago was Alice born?

Jan 2:37
She was born February 16, 2015. So it’s been almost four, well, four and a half years. It just feels like a long time.

Winter 2:46
Feels like a long time, but probably feels actually just yesterday to at the same time, right? You mentioned Scott. So tell me a little bit about, was it just you and Scott at the time? Was Alice your first child?

Jan’s pregnancy:

Jan 2:59
Yes. Alice was our first pregnancy. We were married in 2011. And so gall, we waited four years, I think. Yeah. And then, then Alice came along. –we had a puppy.

Winter 3:13
You had a puppy? That was your fur baby.

Jan 3:16
That was our little Tess baby.

Winter 3:18
And how did your pregnancy go? Was it good? Was it, like, how did that look for you?

Jan 3:24
So yeah, it was really good. I think at the beginning, they were a little worried because I had, my placenta was low. So the first they had me doing some limited activity. Had a teeny bit of spotting. And so they did an ultrasound. I think was like 12 weeks. But everything was fine. The ultrasounds, everything had resolved and look normal. I had a couple bad headaches during the pregnancy, but nothing concerning. Had great prenatal care, went to a midwife. And everything was normal. The whole pregnancy blood pressure, great. No protein in the urine. Everything looked fine. And in general felt fine. Toward the end there, I was very uncomfortable, probably the very start of the third trimester, right on the dot. Really, really uncomfortable. I don’t remember a lot of how, like how to describe how uncomfortable I was, but just did not feel well. Not not bad enough to I don’t think I stayed home from work or anything.

But let’s see. So Alice was born February 16. So February 14, so it was around Valentine’s Day. And I was to the point where I was super uncomfortable. So I scheduled a massage for President’s Day. The 16th. Since I had it off from work, and so I scheduled that Scott and I were going to go to dinner for Valentine’s Day. So I had I had scheduled some time to relax, because it was getting too much.

Winter 5:04
And then what happened? Did that date, did your date ever..?

Jan 5:09
It did not.

Winter 5:10
It did not happen?

Eclampsia and Alice’s birth:

Jan 5:11
No. So Scott worked, was working nights at the time. And so he came, he came home that morning, like around eight, went to bed, a little earlier than eight, went to bed. I was really excited to get my massage. I don’t know what time that was going to be for. But soon, about 10 o’clock, I went to the bathroom. And I was looking at my phone in the bathroom as you do.

Winter 5:35
As you do.

Jan 5:37
The little–I have an iPhone–and the little home button. And I was looking at my phone. And it seemed like the home button was blinking or something on the face of my phone. And I kept looking at the phone and it was like the little home button was on the phone’s face. And that little, the size of that little circle was kind of radiating out toward me with light. And I put, you know, looked away from it. And it followed in my eye and so it was in my eye. And so that worried me. So I called labor and delivery. And no one answered, but they called me right back and I told him what was going on. And they said, Yeah, why don’t you come on in? You know, and it’s probably okay, but come on in. None of that had happened ever before.

Winter 6:21
And were you feeling any sort of contractions? Nothing? Nothing…

Jan 6:24
No contractions at all.

Winter 6:25
So you’re just kind of going, going…

Jan 6:26
Doing my thing. And just all of a sudden, blinking lights. And so I woke Scott up and I said, Honey, I think everything’s fine. But we need to go to labor and delivery, and check some stuff out. And he was kinda you know, he was a zombie. But got in the car, started going to the hospital, which was about 15 minutes away. We weren’t, you know, really, really rushing. But we, we were on our way.

Winter 6:27
And was the blinking light kind of still there?

Jan 6:56
Yeah, so on the way there I was kind of narrating for Scott. And you know, just saying, Okay it’s getting worse, it’s getting worse, not really able to, starting to really have a lot of my vision obscured, not really able to see much. And I don’t know how much he was really processing it. We got to the hospital, he parked right in front of the elevator to go to labor and delivery. He parked badly, wanted to repark and I said, No, we’re going–

Winter 7:23
It’s time or something needs to be…

Jan 7:24
Yes. Yes. So we came in and they were expecting us. And they told, the registrar had a bunch of questions and wanted me to sign papers and, and I was getting really upset at that point. Because I’m like, Listen, I can’t, I can’t see these papers. I can’t sign this. And so Scott had to sign it for me. They took us to triage and said, Put on the belly band and a gown. And so Scott helped me get into that. And at that point I’m like, I can’t see at all and it wasn’t black ,but it was like all my vision was those lights and so it’s like my…I couldn’t process what was happening in my, in my eyes. My brain couldn’t process it.

Winter 8:07
Was it just vision or was it anything else? Any other sort of manifestations? Headache, or–

Jan 8:11
I don’t remember. I think it was just the eyes. And so I laid down and I looked up at the ceiling and I remember hearing Scott yelling my name and the nurses yelling my name. And they, Jan, Jan, Jan. And then I was gone. And I don’t really remember anything until about two days later. But what Scott said was, you know, it’s really, so something about our story is losing a child is horrible. Everything that happened to us happened in the best way it possibly could. And part of that was we got to the hospital. I had the time to wake Scott up. We got there. That kept me alive. And the baby alive. And our doctor was there. I had never met my doctor. I had worked with my midwife the whole time. And she did a great job. She did not miss anything. I was–I never had symptoms of preeclampsia. I had an appointment two or three days before this happened and everything was normal. My blood pressure was normal. My urine was–everything was normal. I’m a scary person with kids. Things go bad very quickly. There was no way for us to know that. So my doctor was there and he came in and anesthesiologist was there. And they…my doctor has experienced with us. Eclampsia is very rare. Eclampsia is when you have a seizure. And so it goes from preeclampsia to eclampsia. It went there, like,

Winter 9:41
–very, very quickly–

Jan 9:42
–in the snap of a finger. So I seized and, and my doctor and the anesthesiologist, and everyone was really great. And they saw it, and they helped. Help me get through that. And I guess I was pushing people away and being a little combative. And projectile vomited. And all the, all the things started happening at once. And I started–my organs started failing, so Hellp Syndrome. I had Hellp. And so at first, you know, they weren’t really sure if they would have to deliver or not. Very quickly, they realized we’re going to have to deliver really quickly.

Winter 10:20
When was Alice’s due date?

Jan 10:22
It was April, I think, April 22. So I was 32 and a half weeks.

Winter 10:26
Okay. So you were…you weren’t close enough per se, but…okay.

Jan 10:31
Yeah. And I have in my journal, that during this time, I kept asking, I think I kept asking, How far along am I, you know, because we were talking about delivering. And they would say it and I would say, Too early know, too early. And then I–and then I was gone. You know, I don’t remember any of that. But then I wasn’t making sense anymore. And the doctor said to Scott, we have to take the baby. It’s time we have to do this. And so they told Scott. They gave Scott some scrubs, and they said scrub up. We’re going to, you can come in the room. We’re going to go over and take her. And soon after that, they came back and they said, You’re not coming in. This is emergent. We’re doing this right now.

So they took the baby and Scott was waiting in labor and delivery room, which I guess I was in there for a little bit. And then so he stayed in there and they took me and then they took Alice and as soon as Alice was out, I was great. I was getting better. I was totally fine. Once she was out. She had–she couldn’t breathe. And so they took her right to the NICU, got her on a ventilator. They resuscitated her and she was doing better. Scott, couldn’t–I think they first said Scott could come see her and then they said nope, you can’t see her yet. So that was that.

Winter 11:51
And you were still–you don’t even remember any of that?

Jan 11:55
Not at all. No, I woke up two days. The last thing I remember was them yelling my name. And then I woke up two days later. So they said that I woke up after the birth. My parents were there by that time. I think Scott’s brother got there first. And I woke up and I saw my mom. And she said I looked really scared. And she said, Scott’s right there. And I looked at Scott. And Scott said, You did so great. Alice is so great. You did so wonderful. Everything’s okay. And then I fell back asleep and woke up two days later. So Scott did so great. My doctor saved my life absolutely. And the anesthesiologist was great too. Everything, everything went as it should have gone and went as good as it could have gone, I think.

Winter 12:41
Oh my goodness, I can’t believe that. That’s crazy.

Jan 12:44
Yeah, it was crazy. And I feel really bad that Scott had to go through that.

Winter 12:48
Yeah, just by himself, kind of by himself, right?

Jan 12:51
Yeah, he was all by himself.

Winter 12:51
And basically trying to take care of you. Take care of your daughter. I mean–oh, my goodness.

Jan 12:57
Yeah. I guess the doctor came in and, and talked with Scott and my parents and said, This has to be so positive. Everything that you’re going to say to her is “She did so great. The baby’s so beautiful. Baby’s so great. Everything went so well.” Because that’s what she needs. So, and they did they did such a good job. And you know, a long time later, Scott told me that they had that little pep talk. Yeah, but they did awesome. They were so great.

Winter 13:24
That’s awesome. It’s so nice to have a like a really good health care team. And I can’t believe you had your doctor was there. That kind of–I mean, it really, it just kind of worked out really well. And that was very smart to react to your–something that wasn’t quite right with your vision. So, after obviously, you had a C-section, because they had to take her emergently. And so you were in bed and healing up. I mean, they usually keep C-sections in the United States anyway, for three days or so. You’re hanging out there. Obviously, they were worried about you because of the eclampsia. Let’s talk about Alice. Is she–? How is she doing?

Jan 14:06
She was okay. I was on– I think i discharged after about a week. They had me on IV magnesium for quite a while–

Winter 14:12
–in order to get you normal.

Alice in the NICU:

Jan 14:14
My blood pressure was very stubborn. It was really rough to manage it. And so I was there for about a week. Alice–oh, my goodness. She got got off the ventilator, I think the next day? She did amazing. She had dilated cardiomyopathy, which I don’t know much about. Her heart wasn’t working great. And I didn’t know why. And they never found out why. They did a lot of tests. They couldn’t figure it out. But she did good. We couldn’t hold her. And it took me about two days, I think two or three days to meet her. That was probably the day I woke up or maybe the day after I woke up. And I was really anxious to meet her. I was scared to meet her. I think I was–I had gone from having a connection with my baby in my belly to She’s gone–

Winter 15:07
–she’s gone.They took her.

Jan 15:09
Yeah, I was very conscious of she’s gone. And she’s not kicking anymore. And I don’t feel her. And I don’t know what she’s gonna look like. And I don’t know this baby. I don’t, I don’t know, this baby, so that was really scary. And when I met her, I don’t think we could hold her until a couple days later. I just wrote that in my journal. I don’t remember that off the top of my head. But, but we met her and she was beautiful. And it was really great to meet her. And she was very strong and feisty. The nurses in the NICU would say she was the most active preemie that they’d ever seen. She always kicked stuff off of her, and they’d find her in weird places in her isolette. So I think that was pretty neat.

I think I didn’t really understand a lot of what was going on. It wasn’t processing a lot of what was going on. Scott was awesome. He didn’t let anybody meet her before I met her. So he went and met her. And he was talking to her and singing to her and doing everything that a dad should do. And said, you know, kept everybody at bay and said, Jan’s gonna meet her first. And I really appreciate that. So I met her and then parents and, you know, the grandparents.

Winter 16:23
Right. So you guys are kind of watching how she’s doing. And does she–how does she progress in the hospital?

Jan 16:31
Yeah, so–I think, you know, she’s our first pregnancy, first baby. We ,we didn’t really know what it was like not to go home with her. I mean, it was sad to not go home with her. But I don’t think, we didn’t know any different. She did, she did okay. She was doing great. We changed a diaper when she was in the NICU, and it had blood in it. And we showed the nurse, and right away and they said we are transferring her to Primary Children’s [Hospital]. So things progressed really quickly after that.

Winter 17:05
How–what day–like how…?

Jan 17:07
I think–I don’t know how long. I’m not sure. So she went to Primary’s, and she was at Primary’s for two weeks. And she developed necrotizing enterocolitis, which is–that was what the blood indicated. And that’s why they got so scared. So it’s apparently a common, pretty common disease with premature babies–I think a big reason why a lot of people get steroid injections when they expect premature babies. So she went to Primary’s. She was there. She did great. And was able to come home in two weeks, and as far as we knew was good. She got off her feeding tube, she was eating again. She was doing well. We were really excited to take her home, did the balloons and all that stuff. And we were able to have about almost three weeks with her at home. My mom was there, thankfully, helping out. She had gone home. I think she was there at least a week. And we were trying to figure out all this parenting stuff, which was crazy. And you know, she was not on oxygen or anything. She was drinking, eating, you know, as she should.

Winter 17:40
Yeah. Was she’s small? Was she–?

Jan 18:20
She was small. She was, she was three pounds and six ounces when she was born. And she was able to gain, I think it was two pounds.

Winter 18:40
That’s pretty good while in the hospital.

Jan 18:42
And we were really, really excited. I have it written in my journal how much she had gained, but everything was looking great. And she had gained weight. And that was a huge thing for us. So excited that she had done that. But I should talk about Alice a little bit. Alice was, as I said, Good. And strong, and sweet. She smiled. And we were able to see her smile.

Winter 19:13
That’s, that’s really early too. That’s really early, really–

Jan 19:16
–it was really interesting. She smiled and she laughed–we were able to hear that. She had diaper rash. She didn’t like that. And you know, looking back, Scott and I are so grateful that she was able to have some of those experiences in her mortal life. And, and overcome some things too. And I think that’s really neat. She would make noises. She would go WEE-O-WEE-O-WEE-O-WEE-O. She would do that.

Winter 19:16
Really?!

Jan 19:33
Yeah.

Winter 19:35
Oh, that’s funny.

Jan 19:48
During that time that she was home, it was a special time. I’m sure a stressful time, although I don’t remember that as much. We felt people were helping us in our home, we could feel other people–we’re we’re pretty spiritual, Scott and I. And we could feel that in our home. And we could–there was one time where I heard people talking to Alice, and I didn’t catch what they were talking to her about. But I think they were female voices. And I heard them in the other room and they were chatting with Alice. And that was really interesting. It was, it was cool. I think that we were really being helped out a lot. We didn’t feel alone.

We thought everything was going well. And it, you know, all the indicators were there–

Winter 20:37
–were fine.

Alice’s death:

Jan 20:37
Yeah. So I’ll just launch into the next part. So Scott had gone back to work. And he works nights. So he was working that night. And Alice, Alice threw up every, every once in a while. I don’t think it was a huge problem for her. But she did tend to have some reflux, I think. So, one night, Scott was at work, and she threw up, and she wasn’t hungry after she threw up. And so that was weird to me. And she didn’t want to eat. And so I got worried about that. She was so fussy. She was really, really fussy that night, and she would not be comforted. The only thing I could do was put her on my chest. And she would stop crying and be okay. But it was all–it was hours and hours and hours. And I was so exhausted. And she, she just would not calm down. Unless I had her on my chest and I just couldn’t keep doing that.

I called Primary’s, and they said that it sounded like reflux. And they said get some, I can’t remember what it was, some over the counter thing. Try that. See if it helps. If a couple more hours go by and she’s still doing that, it’d be reasonable to bring her in. So called Scott. Scott couldn’t find any the medicine anywhere. He finally found some and brought some home. We tried that she wouldn’t even keep it down at all. And finally I took her temperature. I think it was fine. I was really proud of myself for doing that because it was a rectal temperature. And I was so scared. But did that and I was proud of myself and it was okay. And you know, she looked, she looked okay, except she was so fussy.

So finally, I don’t remember when it was it might have been around 3am. I called Scott and he had come home for lunch and given the medicine and went back to work. Finally I called him and I was like, Honey, we’re bringing her in. There’s something happening. We gotta go. He came home. Oh, no, that’s what happened. He came home. And so I think I called him told him that. He came home. He was like, You are tired. Go lay down for a minute. I went in my bed. I laid down for probably literally a minute and I said, We’re going. There’s something, there’s something wrong.

So got in the car and went to Primary’s. They didn’t seem too worried with emergency. They were great, but they didn’t seem too worried. They said she seems okay, but she’s got the heart thing, so we’re going to be extra careful. We’re going to do all we need to do. Great.

As time went on, as we were in the emergency room, and she kept getting more pale and distended. Her abdomen got really big. I knew this was bad. The more doctors that come into your room, as time goes on and don’t leave, you know, things are bad. Then they just kind of would watch. And they ended up intubating her because they wanted to take her first, I think, just for some imaging. They took a lot of air, I think, nine syringes of air out of her, I think, out of her abdomen. And she held my hand when they did that. And I love that she held my hand when they did that. I felt like I was helping. And I really appreciate that I was able to do that. So they intubated her, took her to the procedure. I call my mom. I say, You need to come.

I feel another, another tender mercy–that’s, you know, one of those phrases–but another thing I’m grateful for is, I knew that morning that she was going to die. I knew when we were in the hospital. When they were out doing her procedure, I knew that it was our last day with her. I just knew it. And I was so grateful for that. There is a higher power, who knows me because I needed that. That little bit of knowledge took the control out of my hands, whatever I was going to do, whatever decisions we were going to make, it wouldn’t matter. Because God was in control. It was not me. I was just along here for the ride and to be here for my daughter. So I was grateful for that.

So they did that. So we got to Primary’s. Less than 24 hours she was gone. So it’s more probably more painful to tell this part of the story than anything else. But it’s also helpful. I don’t think I’ll go too much into it. Some of the hard things–do I continue to pump? Those are things I’m asking myself. You know, I feel like if I don’t pump that I’m giving up on her. Right? Also, I’m exhausted. And I don’t, who likes pumping? So those kind of things are going through my head all day. Scott didn’t know that we were going to lose her. I don’t know if I communicated to him that I had that feeling and that I knew that. He didn’t know it.

So they, they did surgery. She had, her intestine had completely closed. So she had a stricture. So we thought she had healed from that necrotizing enterocolitis, N-E-C, NEC. But her intestine had completely closed. There’s no way for them to know that. She had had a heart follow-up appointment between the time of her discharge and when we took her to Primary’s that day. Every–you know, it was fine. Like they were like we don’t know she’ll probably be, she’ll probably be normal. We don’t really know. But there’s nothing genetically we can find. She’s okay. She had an EKG. She let me hold her for the EKG. Again, I felt I was helping. That was great. That was at that follow-up appointment. There’s nothing that, that–

Winter 26:12
–indicated–

Jan 26:12
No, no. And there’s nothing they missed. Like, I’m not going to go looking for stricture. You’re going to see her go bad. And like when she had arrived at the ED, they thought she was fine, too. Like if we had brought her in earlier, it wouldn’t have helped. There was nothing–she had to get bad for them to–

Winter 26:30
–actually come to that.

Jan 26:31
Exactly. So they did a surgery. And came back, you know, they said, they gave her a colostomy, took out, you know, a lot of her intestine. And they said, We don’t know how she’s going to do. So I, thankfully, have experienced with medical social work. I have experienced with hospice and palliative care. And I said to the doctor. The first doctor, I couldn’t really understand very much and I honestly didn’t like him too much. Next doctor came in in the rotation. And I said, Listen, I’m a medical social worker, I do this. I’m ready. I said, if we need to be done, then we can be done. Let’s have these talks. So grateful I was able to do that for our family. I really feel like that helped a lot. And so things changed when we had that, when I said that, and the doctor said, Okay, listen, her heart’s not great. We can’t pump a lot of fluid into her. We can’t do a lot. Her heart can’t take it. It’s not looking good. And the doctor was wonderful. And he said, Give us some, a couple hours. And we’re going to see how things go and we might have to take her back to the hour. That sounded fine.

You know, time passed–wasn’t getting better. She was really relying on machines to keep her alive. They were going to have to take her back to the or we said okay. Do it. They took her to the OR. The surgeon was not–was very surgeon-y. Very much just their deal and gave us the story of them, which we felt like oh okay. You know, she probably won’t have short gut syndrome. She’ll probably…she might have an ostomy for her whole life. We don’t know, but maybe she’ll be okay. The cardiologist came in later. Scott and I were in a suite, which is great that they have these little rooms, you know, you can go in. The cardiologist came in after we talked to the surgeon or, excuse me, I think he was present for the discussion with the surgeon. Surgeon leaves.

Cardiologist says, Listen, they know surgery, they’re not looking at all of your baby. She’s not going to be able to do this. And you guys need to prepare yourself. And said it very kindly. So we, we understood that. So let’s see, the doctor said–so they did the second surgery came back said, It’s not good. Things aren’t good. And the the ICU doctor said, Give us a couple more hours. After a couple more hours. We are going to know for sure if we can continue or not. And he said, These couple hours are going to be a special time for you guys to have together. And, I think, he meant me and Scott. And and then we’re going to come back in a couple hours, and we’re going to talk.

Alice was gone that day. Like she wasn’t there, I don’t think. She wasn’t there. And that, I was happy for that. I didn’t want her to be in pain. And she probably was at some points, but I really believe she really wasn’t really there, for most of the time. My brother came. All day, Scott and I were saying, you know, you’re doing such a great job. We love you. We’re so proud of you. You’re doing so great. So hard to see her like that, obviously. Terrible to say her like that–

Winter 29:49
–tubes and IVs–

Jan 29:49
Yeah. Yeah, but you gotta be there. So, you know, we were there as much as we could. And my brother came to visit and she woke up. And she was there. And so my brother ran out of the room, so Scott and I could be with her when she was there. Her eyes were open. We knew she was there. She was present with us. We talked to her. We said, We love you so much. We said, You’ve got a choice here. We said, We will support you if you stay. We will support you if you go. I was more scared for her to stay. I didn’t know what her life would be like. But we still were willing, and so we said, We will be here for you either way. I feel like she understood that. She went back to sleep.

Scott and I went for a couple hours. We knew things weren’t good. Of course, Scott after the first surgery, I think, realized we’re probably done. We talked. We slept a little bit. We texted ourselves memories. I really treasure that. And I’m so grateful we had that time. I think we probably got blessings from our parents, you know. They were there, but kind of in the background. We met again with the doctors, I think we woke him up after a couple hours. I was like, All right, I’m calling this guy we haven’t heard back. We had a meeting. Think Scott’s dad was present for that. My parents were there but again, kind of off on the side. And I asked the doctor, you know, is there anything else you can do? And he said, every reasonable thing has been done. There’s nothing else we can do. And I said please repeat that. And he repeated it. And I said, Tell me one more time. And I looked at him really intently. And I looked at him as he told me that. And I’m grateful that I had him do that. This was not our decision. It was out of our hands. It was done. And I was grateful that I didn’t–it wasn’t me making that decision really. It was done.

I don’t think that we were, we, Scott and I couldn’t be there when she left. When they removed the machines. I couldn’t do it. Scott couldn’t do it. We knew she wasn’t really there. We had had our time with her when she had woken up. So Scott’s dad and step-mom. were willing to do that and wanted to do that. And so they were there. Scott’s mom passed when he was a teenager and Scott’s dad said she was there when Alice went. And she said I knew she was gone before the nurses told me because because I felt Michelle there, which is Alice’s middle name, after Scott’s mom. So that was that. That was that.

Going home without Alice:

And I’ll go on to the hardest thing, was going home. Going home without her. It was the best thing we did. We went home and we went home together, Scott and I. We had family offer to get a hotel for us, you know, to come with us. But we knew it was inevitable, that we would have to return without her. I think Scott’s worst thing was probably taking that empty car seat in the car. We come home. We see the bottles strewn everywhere, we see the blankets, we see all those things, right.

I lost it when I heard my dog in the kennel, and thought, and I told him what happened. Obviously he didn’t understand but and just said she’s not, she’s not coming back. He was really sweet with her. He would come and bark at me when she was crying and be like, Come on, when are you going to do something? That was the hardest thing. And that was the best thing. Because Scott and I were going to continue on together, him and I, as a couple. So that was probably the roughest thing. But I’m so glad we did it–

Winter 34:00
–together. And I’m assuming it was quite empty feeling for a time there.

Jan 34:08
It was awful.

Winter 34:10
I’m hoping that you guys took some time away from work and all the things?

Jan 34:15
Absolutely.

Alice’s funeral:

Winter 34:16
So next steps, obviously are to plan some sort of funeral, memorial. What did you guys end up doing?

Jan 34:23
She passed away the day before my birthday. We went to the mortuary; we wanted her to have a gravestone. We wanted her to be buried. So that’s what we ended up doing. We went then maybe the next day, maybe a couple days after–I can’t remember. Scott handled that. He like deliberately sat next to the guy at the mortuary and me not next to the guy, because I was not a happy person there or a nice person and I was able to get up when I needed to get up. But we did that. And I think one of the most helpful things–let’s talk about some of the helpful things that happened after she went. So what we did was we ended up doing just graveside service. And I spoke, I think Scott spoke, we can’t really remember that. And I couldn’t find what I had said. And then Scott laid her to rest in there and everyone threw in flowers. And it was crazy windy, and all the kids were upset that they had to be standing in the wind. But it was a good fitting thing, I think, for her that, that was the day of her funeral. And that was what it was like.

Winter 35:33
Oh, it’s just like her personality!

Jan 35:35
I know, it was neat. But we did that. And then we went to a family member’s house for like a little reception afterwards, you know, which was good. I was really great for the funeral. And then after, you know, I wasn’t. But you have your moments. And that was right. Yeah. Having to…we bought plots at the same time, Scott and I, which was great. We wanted somewhere, we wanted to know where she was. And we wanted to be able to come and visit.

Winter 36:07
Yeah and kind of have a home, in a sense–

Jan 36:10
–know where she was. Yep. And it was close to our house, which is really great.

Life after Alice’s death:

Winter 36:15
So what has helped, what did help, at that time help you process through all of this? Because that, obviously was a really sudden change. You’re going along…

Jan 36:24
The birth and the death, both were very sudden.

Winter 36:26
Yes and changed your life very quickly, very. Yeah. And how did you go through that? How did you process that?

Jan 36:33
Yeah, she lived for 55 days. And so we kind of had a little time, right? And so yeah, both, on both beginning and end, very sudden. So kind of what helped us process was coming home together, I think was one of the most important first things. And then telling the story of the events leading up to her passing and after, were so important. So we, Scott and I, talked about it. And you know, we’d go over the story again–then this guy said this, and then this guy came in, and then and then this happened. And then that happened with–together, we would do that. And then we had family, or Scott’s dad and step mom, you know, came over a bunch. They were from out of town, but they, you know, were staying and and we told them the story. They were there, you know, that night, but told them the story went over that over and over. And I don’t think they intended to have us do that. But that’s what happened. And it was so helpful to just keep talking about it and saying what happened. And then more family came into town for the funeral. And I would tell them what happened. That was so helpful just to keep talking about it, and remembering this and that, and that, and it just helped me process it. And then showing pictures too. And you know, this was her and this was, you know, this outfit I really like, and showing and maybe some clothes. And this was her room. And this was the changing table and being able to do that, I think, was really helpful. And happy. Some of it, happy, to do that

Winter 38:02
Right. Well, you get to reflect on her life, and I love the fact that, I mean, you said that she, you could tell that she had a goodness about her and that she was feisty too, like I love that. She was able to show her personality to you, even in that short 55 days.

Jan 38:16
Yeah, exactly, exactly. Sometimes I just needed to be with Scott. And people respected that, which was really great. Sometimes we just needed to be together. And that was fine. And sometimes I needed to be by myself. And that was fine. And I think just understanding that and respecting that was great. And sometimes I would lose it. And that’s fine too. And I needed to, what I would do would go to her room. And I didn’t really touch her room for a while. And just bawl and bawl and bawl, just lose it, throw up, you know, just lose it. And in a way, I feel like that was kind of loving her, you know, and being with her, which is great. And the intimacy of this loss is, it’s a very unique loss. And I’m not one to really compare losses. I don’t think that’s a helpful thing at all. But losing a baby is so unique. And I think for a mom, especially so intimate, right? And you want them. I’m like touching my body as I talk because you want them and you yearn for them. And I don’t–I wanted to lay on the ground where she was buried, and have my body as close to her as I could. So losing it was important and happened and was fine. And I appreciate that Scott would let me lose it. And that, that was okay.

Winter 39:50
That was okay. It’s good to cry. It’s, it’s good to lose it.

Jan 39:53
Yeah, it can be scary for other people, I think, but it’s okay.

Winter 40:05
It’s totally okay. And I hopefully with some of these interviews that we have is that we talk about, that it’s okay to lose it, to be able to cry and mourn and also celebrate your daughter’s life, you know?

Jan 40:10
Yeah. And I think there’s a point where it’s not helpful to lose it. If you’re starting, if you’re starting to think about–so this is going to get morose–but if I started thinking about her body and what was happening to it, as time passed, that would be very dark and bad and not a good thing. So I think there’s times where it’s not if you notice that and it’s feeling gross and icky, then stop yourself–

Winter 40:35
–going down the wrong direction.

Jan 40:36
So there’s degrees, I think, but yeah, but okay to lose it.

Winter 40:41
Okay to lose it. Thank you for sharing her story. Is there anything you want to share about Alice with us?Or you want to say it on air and have it out there?

Jan 40:53
I think that Alice knows me and I know her. And I’m really excited to spend more time with her someday.

Winter 41:03
That is wonderful. Thank you so much.

Jan 41:05
Yeah, absolutely. Thank you.

Outro:

Winter 41:07
Many, many thanks to Jan for being vulnerable, and sharing Alice with us today. That was beautiful. And we’re so grateful that we got to get a glimpse of who Alice was.

Head over to our website, StillAPartofUs.com, where you can find the show notes, including a full transcript of this interview and any resources that were mentioned, where you can sign up for our short and helpful email newsletter, where you can learn how you can become a patron and support the work it takes to produce the show for just a few dollars a month, and lastly, where you can find out how to get in touch with us if you want to share your child’s story on the show.

The show was produced and edited by Winter and Lee Redd. Thanks to Josh Woodward for letting us use his song, “Flickering Flame”. You can find him at JoshWoodward.com. Lastly, subscribe to this podcast 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.

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