Ep 236: Kerry’s Birth Story – Navigating the Unimaginable

Dr. Nicole (00:00:00): This is an extremely moving story, but warning, it does involve the death of a baby from a rare genetic condition. Welcome to the all about Pregnancy and birth podcast. I'm Dr. Nicole Callaway, Rankins, a board certified OBGYN, who's been in practice for nearly 15 years. I've had the privilege of helping over 1000 babies into this world, and I'm here to help you be calm, confident, and empowered to have a beautiful pregnancy and birth. Quick note, this podcast is for educational purposes only and is not a substitute for medical advice. Check out the full disclaimer at drnicolerankins.com/disclaimer. Now, let's get to it.

(00:00:52): Hello there. Welcome to another episode of the podcast. This is episode number 236. Whether this is your first time or you've been here before, I'm so grateful you're spending some time with me today. This is a very hard birth story, but I do hope that you listen as it's such a demonstration of strength and resilience through an incredibly challenging time with unimaginable ups and downs during the process. In today's episode, we have Carrie. Carrie is mom to Finley, Quinn, and their two dogs. They love spending time outdoors, hiking, and she loves playing ultimate Frisbee. Carrie had a normal pregnancy, but a very abnormal birth and neonatal period. She wanted an unmedicated birth, made it to eight centimeters, had her water broken, and then ended up with a C-section, and we'll touch upon that today, but we're going to spend the bulk of the time talking about what happened after her daughter's birth.

(00:01:56): Her daughter spent seven weeks in the NICU where she was diagnosed with a rare epileptic condition, and she died at three months in their home on hospice care. Carrie has since gone on to have another daughter, and we touch upon that as well. Now, what happened with Carrie and her family is rare and not common at all, but rare and uncommon does not mean that it doesn't happen. The reality is that sometimes very difficult and painful circumstances happen during pregnancy and birth and things are not going to be okay, and we need tools to deal with those unfortunate, tragic, painful circumstances. And in sharing her story, Carrie just does such a beautiful job, and it's such a beautiful demonstration of the tools and things that are important help navigate the unimaginable. So let's go ahead and get into this birth story with Carrie. Alright, thank you so much, Carrie, for agreeing to come on to the podcast and share your story with us.

Kerry (00:03:18): Thanks for having me.

Dr. Nicole (00:03:19): Yeah. So why don't you start off a bit by telling us a bit about yourself and your family?

Kerry (00:03:24): Yeah, so we're located here in Tucson, Arizona, which is really hot right now. So we're stuck in a hot house. So it feels like a piece of my identity right now. And I'm with my husband and we have our two dogs and my daughter Quinn are currently with us, and we're really outdoorsy people, which is why being in the heat feels like a part of our identity. You can't really go outside right now.

Dr. Nicole (00:03:56): You cannot, when it's a hundred and something degrees, it's hard. Yes, yes, yes. And we are going to spend most of our time talking about your first birth with your first daughter. That's correct. And her name was

Kerry (00:04:09): Finley.

Dr. Nicole (00:04:10): Finley. Finley. All right. So in order to understand what happened with the birth, we got to talk a bit about the pregnancy. So what was your pregnancy and prenatal care with Finley?

Kerry (00:04:21): It was very normal. Everything seemed normal, so I was under midwifery care. We have this really cool setup here in one of our local hospitals where the midwives have two birthing rooms within the hospital. So you can get that midwifery care, you can have that experience, but also feel that safety net of just

Dr. Nicole (00:04:45): Oh, that's nice

Kerry (00:04:46): Being in the hospital. So we went that route because I had wanted to do an unmedicated birth. That is not at all what happened, but that's what I wanted.

Dr. Nicole (00:04:56): Right, right.

Kerry (00:04:58): And I loved my care because the midwives, they just had a lot of time with them. So my appointments were, they were longer than 15 minutes every time. They were very focused on reassurance that things are normal, and it was all stuff that I just really appreciated. And so it was good. I had some pelvic girdle, some pain. It got pretty intense at the end, so that was kind of not fun, and we'll go into that later, I'm sure. But other than that, everything just seemed normal. Okay. Right up until the very end when it was not normal. Okay.

Dr. Nicole (00:05:41): Okay. All right. And then what are some things you did to prepare for birth?

Kerry (00:05:45): I feel like I did a lot. So I listened to so many of your podcasts, and then I got your birth prep course. And then the midwife care that I was in, it's a community center, and they have a birthing class too. So you got put in this cohort of people, and we had hour long, this was all during Covid as well, so I was pregnant summer of 2020. So you got put in the Zoom cohort with people when we did birthing classes together and got to know each other. I did not feel like that had as much information honestly as your podcast in your class, but it was kind of a nice little extra. Then I got to know a little bit more about specifics of my area. Gotcha, gotcha. I did not read any books, so I am not a reader, so I'm so happy that podcasts and online courses exist.

Dr. Nicole (00:06:40): Yeah, exactly. So you said you wanted an unmedicated birth. Was there anything else that you wanted for your birth?

Kerry (00:06:46): Not really. I mean, I was hoping to just have an unmedicated vaginal birth. I wasn't super opposed to an epidural, and I was really trying to just leave it as open as possible, because I always hear you say birth's unpredictable. You don't know what's going to happen. And so I was trying not to get too caught up in specifics or anything. I just, I wanted to be able to eat during my labor though, and that was something that was really big for me, so I wanted to be able to eat. Gotcha,

Dr. Nicole (00:07:21): Gotcha. And I'm sure the midwives probably supported that

Kerry (00:07:24): They did until I had to be induced, and then it

Dr. Nicole (00:07:28): Kind of, it sort, yeah. Okay. Okay. All right. We'll definitely get to that. Yeah, go ahead.

Kerry (00:07:33): Everyone tells you you're not going to want to eat, and I was like, no, I'm going to want to eat, and I wanted to eat

Dr. Nicole (00:07:41): Uhuh just like I know my body and my body says I'm going to want to eat. Okay. All right. And then was there anything at all that you were particularly scared about or worried about for your birth

Kerry (00:07:52): The first time? No, other than just, I mean, I think the general fears, something's going to happen or it's going to be really painful, or I was a little unsure if I was going to be able to do it on medicated. But yeah, it didn't have any, I think just the general nerves that everybody has.

Dr. Nicole (00:08:14): Yeah. Yeah. And so your pregnancy went along normally no issues with growth ultrasounds and things looked okay.

Kerry (00:08:23): Yeah. Oh, and I will say one of my fairs was getting a C-section, which I ended up having. But yeah, no, the scans all looked good. Her 20 week scan looked good. The practice only did a 20 week ultrasound, so there was no, nothing really, aside from them checking her heart rate in the office, there really wasn't anything more done and nothing was abnormal. Okay.

Dr. Nicole (00:08:50): Alright. So then how did you come to be induced? Let's talk about your labor and your

Kerry (00:08:54): Birth experience. Yeah, so right at 40 weeks, I woke up one morning and I felt a wetness, and I thought that might be my fluid. I might've ruptured, but then I'm like, it's not a lot. So I don't know. So I got on the phone with the midwives. They're like, you're describing enough, come in. So I went in, they did the test and it was not amniotic fluid, but while I was in there, the midwife was just like, she's kind of like, my spidey senses are going off, the kind of, something isn't quite right here. I'd like to do an ultrasound. And so I was like, okay. And so we did the ultrasound and she was pretty large, and I had a lot of, well, at the time, I just had excess fluid. And then she was not passing her NST. We were in there for hours and it just was not going well.

(00:09:51): So they were like, we think we should induce today. And I was just not ready for that at all. And so I bargained with them and I was like, can we do this tomorrow morning? I want to go home. I want to get my stuff. I want to do these things. And so we got her to show up on the screening well enough that they agreed that we could go home and do the induction in the morning. So I went home, I packed up all my stuff. We got my mom to come out from California so she could watch our dogs. And we went in for an induction in the morning. And at that point, I was pretty concerned because mostly because I didn't want that c-section, and I knew we were starting the cascade of interventions potentially. And also I wanted a medicated, and I knew that that could be a little more difficult with an induction.

(00:10:50): And because of the excess fluid, she really was not staying on those monitors very well. And that turned out to just be a nightmare for me, just because, not that it was stressed that anything was happening with her, because again, so far I think I have a normal pregnancy, everything's fine. I have a healthy baby. So just the flip from planning on intermittent monitoring to the continuous and having those things not work very well. And I had planned on being mobile. That was a big part of why I didn't want an epidural is because I wanted to be able to move around. I don't like being stuck places. And then I'm on these monitors. And then they wanted to also put in iv in and from your podcasts, I knew that I could ask for a saline lock. So I did that and they agreed to that. Okay, well, good. So I was happy about that. So at least I didn't have the IV machine too the whole time. Gotcha,

Dr. Nicole (00:11:54): Gotcha. So what did they use? How did they start the induction?

Kerry (00:11:58): It was not ripe at all. So they had to start with, I did the one that's inserted that you can remove. I can't remember what that one's

Dr. Nicole (00:12:06): Called. Oh, yeah. Or I think so. Okay. We started

Kerry (00:12:11): With that. We went in, we ended up doing it in the evening, and they said I couldn't eat for an hour after I got it, and I was hungry going in, so I was like, we're going to have to wait on this one. I need to eat

Dr. Nicole (00:12:23): First. So

Kerry (00:12:26): I made them wait, we got me food. Then I started the process, and then overnight we just waited. And then the conversation was in the morning, we'll start Pitocin, but potentially you could get kicked into labor through this process. And then the arguments started about being able to eat because they didn't want me to eat if I was on Pitocin. And finally one of the midwives just threw up her hands. She wasn't one that I had seen a lot during my pregnancy. She was like, you know what? We'll just deal with this when it comes up tomorrow, we won't talk about this anymore. And later I realized, I was like, she's not going to be on shift when it comes up

Dr. Nicole (00:13:08): Kicking the can. She was kicking the can. Yes.

Kerry (00:13:13): But thankfully, it turned out not to matter because the ol kicked me into labor. So I didn't need to be on Pitocin, which was awesome.

Dr. Nicole (00:13:20): Kind of, I guess we'll hear why or why not. Yeah,

Kerry (00:13:26): It was great. I could eat, but I had these very strange contractions, so they were not very painful. They weren't very strong, but they were strong enough. But they would last for a very long time. And then I would have very little time in between my contractions, so I was almost reversed. If you looked at the machine, it was just flat, flat, flat. And then it would dip down and it would come back up, and then it would be flat, flat, flat. And that's just what I felt. So that became kind of exhausting because I just wasn't getting

Dr. Nicole (00:13:59): Any break. A break. And this was just from the servail. Okay. Yeah. Okay. All

Kerry (00:14:06): Right. So things are kind of moving along though. And I was managing, and I was really upset about the monitors. So I kept asking them, what are the other options? What are the other options? And I just kept digging in what are the other options? And eventually someone was like, we have Bluetooth sticky monitors, but they're like, they don't really work very often, so we don't like using them. And I was like, well, let's try it. Let's try it miserable. So get 'em out for me. And I actually ended up working great.

Dr. Nicole (00:14:34): Nice. Okay.

Kerry (00:14:35): You can only leave them on for 24 hours because the adhesive, and they were like, it's only going to be 24. And I was like, let's just do it. I don't care. I'm miserable. This will make it better. So that worked great. So I ended up being able to move around. I got the freedom that I wanted, and I wasn't constantly just struggling with the monitors. Nice. Okay. So yeah, I was really thankful for you at this point because I was advocating for all the things. I just had you in my head. Just keep asking questions, keep pushing for what you want. So that's what I kept doing, and then I ended up, it was just really long and tiring. So at one point, I ended up getting a sentinel break, which again, I learned about in your birth course. Okay, I'll do that to get a break because I still didn't have an epidural.

Dr. Nicole (00:15:33): Did it help?

Kerry (00:15:35): It did. Oh, yeah. I just passed out. I took a nice long, I think I was on it for an hour, and I just slept that entire hour. So I got a little break and that was great.

Dr. Nicole (00:15:47): Good.

Kerry (00:15:49): Then I think, let's see, then now we're like 10 at night, 10 at night, and I'm at eight centimeters. We're at 20 plus hours into this, or over 24 hours into this because they started and

Dr. Nicole (00:16:10): You never got started on Pitocin. Okay. All right. Did they break your water or offer to break your water at any point?

Kerry (00:16:17): So I had a lot of fluids, so every time they were doing cervical checks, they're like, we just feel this bag of water. And so we're talking about breaking the water, but they're like, can't, all we feel is this bag of water, so we don't want to break it and have the cord slip, so we need you to get a little bit, it just kept me, we need you to get a little more dilated. We need to get you a little more dilated so that we can be confident that that head is going to drop in. So around eight centimeters, they finally broke my water, and that just my contractions went from being not very painful, but long to just so painful, and it was a huge gush of water. The midwife said that it was some of the most water she had seen,

(00:17:12): So it was a huge gush of water just immediately, so painful. And we did that for a while. This is where it all just becomes a blur to me because it just is so painful, and I still don't have an epidural. So I'm just in pain trying to catch my breath, and I'm still not having a lot of break in between my contractions. And then at some point, an OB comes in and she's with the midwife, and she is so calm, and I really appreciated her, but she said, we're really concerned about the heart rate because she kept dipping and your water was very warm. So we're a little worried about infection, and I think there was one more thing, I can't quite remember, but basically it was we're worried about infection and we're worried about her heart rate because she kept dipping thing. And so they're like, we think it's time to do a C-section. And at this point, I was just in so much pain and I was at nine centimeters, so I was not there yet that I was like, okay, let's just get this over with. So I agreed to the C-section.

(00:18:28): Finley was born at 1215

Dr. Nicole (00:18:33): For almost, it was 1820 hours. Was it longer than that?

Kerry (00:18:40): Well, my contraction started at six. 6:00 AM

Dr. Nicole (00:18:44): Right. All right.

Kerry (00:18:47): Somewhere in the middle or somewhere around

Dr. Nicole (00:18:48): The early morning. Yeah, so it's been quite some time. Did they say maybe you can get an epidural and then we can see how things go? Or were they just like, no, we're just, something is not, the heart rate's too concerning and you're not close enough to deliver. We need to just go ahead with the C-section. Yeah.

Kerry (00:19:07): Okay. We didn't really have too much conversation about it. I also had a doula, so through all of us, I had a doula. I forgot about that, and she was great. It was really awesome to have her there through this whole thing. And so the doctor came in and she told us this information. Then she's like, we can give you a little time to talk about it. She left. So my husband and my doula and I, we all discussed it, and we just decided

(00:19:31): See the C-section, and knowing what we know now about Finley, likely she was having seizures. So her heart weight was probably fully dropping out because that's what it would do once she was earth side. So I don't think it was just a slight dip. I think she was like, and what she would do once we had her on monitors constantly is her heart rate would drop really fast and for a very short amount of time then would come back up. So when she was in the NICU for a long time, they actually thought that the sensors were malfunctioning because pulse oxes can have errors and stuff because she would dip, and then by the time a nurse or anyone would come in to check on her, it would be right back up. They're coming in and it's already going back up. So I think that's what was happening

Dr. Nicole (00:20:23): When she was still during labor.

Kerry (00:20:26): And I think once the contractions really started to squeeze her, because she, with seizures, things can trigger them. So I think once she was kind of experiencing all those contractions full on without the water,

Dr. Nicole (00:20:41): Then it really,

Kerry (00:20:42): She was just starting to have those seizures more.

Dr. Nicole (00:20:46): So then the C-section, how was the C-section itself? And then I guess, tell us about how she ended up going to the nicu.

Kerry (00:20:55): Yeah, so I mean, the C-section was fine. They came in, they prepped. Everybody was pretty calm because it wasn't, it's an emergent but not emergency. So my husband got to come in with me. I've had a few surgeries in my life. I'm an athlete, and I've had some sports injuries and some surgeries. So it wasn't my first surgery. It was okay for me. I spent a lot of time talking to the anesthesiologist. They're right by your head, so a good distraction. And I just kind of chatted my way through it and wasn't really excited about, obviously no one's excited about getting a C-section, but it's a little nerve wracking awake and things are happening, and thankfully the spinal worked well, so I didn't feel any pain, but I did feel that tugging.

Dr. Nicole (00:21:46): Yeah, it's a weird sensation. It's hard to describe until you, yeah, it's like something's happening, but it doesn't hurt. Yeah.

Kerry (00:21:54): And I was also, right before I had gone in, I listened to your episode on inductions, and I had listened to something about C-sections. I think I had listened to your story, so I knew that some amount of that ceiling was normal. So that was kind of reassuring. So then she came out, her Apgar scores were really low, and so they took her to the nicu, and I was, honestly, I was not super with it at this point,

Dr. Nicole (00:22:25): Probably tired,

Kerry (00:22:26): And I'm trying to just keep myself calm, being in this setting that I was not super comfortable with. So I wasn't fully aware of what was happening. And my memory gets a little foggy around this point, but she went to the nicu, and at this point, we weren't too concerned because it's not, I've learned it's not super unusual for a c-section baby to go to the NICU initially and get that suction and the help with their breathing, and then they get released. So that's initially what happened. And then back on the recovery ward, a couple of those hours get lost. In my mind, I don't even know, but my mom was there and my husband was there, and at some point, she got released from the NICU and was back in the room with us, and I have,

Dr. Nicole (00:23:16): Oh, so she actually came out of the NICU for a bit. Okay. Yes. Okay.

Kerry (00:23:21): Yeah, she came out of the NICU and she was in the room with us, and I was trying to breastfeed her, and she wasn't doing it, wasn't latching, wasn't rooting, wasn't doing anything. And I just started, my mom's sighting census kind of started going off. I was like, what's going on here? And then the pediatricians even came in and looked at her and they did the thing where they raised her arms and dropped them, and she didn't respond correctly to that. So then they brought in an X-ray machine, and they're trying to figure out what was going on, but again, at this point, we're not super concerned yet. And then because she was having trouble feeding, I asked for a lactation consultant to come in. So the lactation consultant comes in, and I'm showing her what I'm noticing that she's not latching, that she's not rooting, that she wasn't really grasping my fingers, that she just wasn't having a lot of those normal reflexes. And the lactation consultant's like, yeah, this something, right, something's not right. We need to get the NICU team back in here. So then they came back in, and I think she probably had a seizure while they were in there because the doctor came in and was like, her lips are blue. We got to get her out of here.

(00:24:41): And so then she ended up going back to the nicu. So that was a little unnerving that the first rush thing that had happened was the doctor comes in, looks at her, and is like, we got to get her out of here. So she goes down to the nicu. My husband went with her. I'm stuck in the bed because I just have a C-section. So then I got down there a little bit later, and they had her on oxygen, and then it became trying to figure out what's going on. Okay.

Dr. Nicole (00:25:14): Okay. And then how long before they figured out what was going on?

Kerry (00:25:22): Weeks.

Dr. Nicole (00:25:24): Oh my gosh,

Kerry (00:25:25): Weeks, and it was getting worse.

Dr. Nicole (00:25:28): Okay.

Kerry (00:25:29): Because she's having seizures, so she's losing function. But the tricky thing about babies, from what I've learned in this experience is that it's really hard to tell when a baby's having a seizure, because baby movements are so uncoordinated, and babies are so unpredictable, and they're, oh my gosh, it's escaping me. The brain EEG are hard to read when they're teeny tiny. So within those first couple of days, she had her first EEG, and it came back a little abnormal, but the neurologist is like, I don't think she is having seizures, but we'll put her on Phenyl, but I think she'll be off of it by the first year of her life. And so that was kind of the start of that NICU roller coaster where every day we were hearing a different thing and a different thing was happening, and it was just like every day was, we don't know what's going on. And it just kept looking worse and worse.

Dr. Nicole (00:26:36): And by worse and worse, it was like she was having more seizures during the day.

Kerry (00:26:40): So she was just wasn't getting by worsts, I guess. It was like she wasn't getting better. So they were hoping, initially they were hoping that, oh, this is a C-section baby. She had low Apgar score. Maybe she'll get used to life outside the womb and she'll start learning how to suck, and she'll start learning how to do these things. But she couldn't swallow, so she had no swallow reflex

Dr. Nicole (00:27:08): At all. So she couldn't take a bottle or anything?

Kerry (00:27:10): No bottle,

Dr. Nicole (00:27:10): Nothing. Okay.

Kerry (00:27:11): No breastfeeding. They had to put an NG tube in. She had to be on oxygen, and she would go on and off of oxygen, so they would take her off the oxygen, and she would kind of do okay. And then we'd come back in, she'd be back on the oxygen. So I was like, okay, this is clearly not going in the right direction. But they had no idea what was wrong with her.

Dr. Nicole (00:27:37): Oh my gosh. And then in the meantime, you're recovering from having surgery, and then you're going back and forth to the NICU every day? That's a lot.

Kerry (00:27:50): Yeah. We stayed in the hospital as long as we could. We took that full five days for the C-section, and we got an extra day because of the 1215 thing. So we were there as long as we could. And so that was nice because you can wheel down, wheel back, and I started pumping in the hospital, and I got hooked up with a lactation consultant there, and she was great. So we got my milk to come in, and Finley got donor milk, and then thankfully, I only live 10 minutes from the hospital,

Dr. Nicole (00:28:26): So

Kerry (00:28:27): Thankfully it wasn't a big time. There wasn't a big commute time. So we would kind of go in the morning, spend a couple hours there, go home for lunch, I would kind of rest. Then we'd go back for an afternoon, then we'd come home for dinner, and then we'd go back another time for a bedtime thing, and then we'd go to bed, and then we'd wake up and we'd do the whole thing again. Gotcha.

Dr. Nicole (00:28:51): Gotcha. And then were you on leave from work at all?

Kerry (00:28:55): Yeah. Yeah. So I was on maternity leave, and my husband amazingly had paternity leave for six weeks. So for the first bit he was on leave, although he was also a college student, and this is happening at the end of a semester, so he somehow finished his semester.

Dr. Nicole (00:29:13): Oh my gosh. Okay. That's crazy. Yeah,

Kerry (00:29:17): I don't know how he did that. Yeah.

Dr. Nicole (00:29:19): And were you at all thinking, I mean, obviously you're hoping that she's going to come home at some point, and were you like, well, I, you think your leave is to be able to bond with your baby, or was your work had you even gotten to that point?

Kerry (00:29:34): So it was a real rollercoaster because the first couple weeks we think we're trying to process, okay, so now we're going to have this high needs child and we're going to have to figure this out. And we're trying to just process that. And it's again, kind of a struggle because we're really active, outgoing, outdoors people. And so that doesn't always fit super well with a high needs child. But we're like, okay, we'll figure this out. And then at one point, the social worker told us, started getting us to try to do the paperwork for disability services and Arizona long-term care, which is the Medicaid hot care for people who are going to need a high level of care.

(00:30:23): And she's talking about being on vent. And that's where I kind of lost it. So that was the end of her for me, because I was like, I talked to my doctor. I was like, why is she talking to me about event when we don't even know what's wrong yet? What is happening? And I told the doctor, then I don't want anyone to speculate about what our life is going to be like or what she has until you can give me a diagnosis. So I don't want to hear what might be happening. When you have a diagnosis, let us know, and then we'll deal with what it is. Okay.

Dr. Nicole (00:30:56): So then how did they finally get a diagnosis and what was

Kerry (00:31:00): It? Yeah, so finally they went through all the metabolic things. It wasn't any of those. So there's a lot of crossing off answers. And she has had something called oto Hare RA's syndrome. So it's a specific type of seizure disorder. And my understanding is that it's diagnosed just from a clinical stance, so it's diagnosed from what you're seeing. So they ended up doing another EEG. She had to be sedated for it, and she had done MRI. She had to be sedated for the MR mri and the MRI came back fine, but the EEG showed more seizure activity than the first one. It was more clear. And that was pretty devastating because the second one showed that she was having really low brain activity, and they call it a burst suppression. So she has a suppressed brain activity. And then she would have these bursts of activity, which were seizures, and then go back to suppressed. So unfortunately, that meant that she really wasn't, didn't have a lot of brain activity most of the time. So she wasn't really aware of what was going on. She wasn't going to gain any skills. And then she was having a lot of seizures, like hundreds.

(00:32:24): And then another part of that diagnosis is that the seizure medications aren't effective, so there's no way to control the seizures. So unfortunately, that was a terminal diagnosis for her because eventually she was just going to have so many seizures. So that was really hard, devastating. But at that point, we were about, I think we were four or five weeks into being in the nicu. So the benefit of that was the NICU had become this support system for us. So we got to know a lot of the doctors. They took amazing care of us. We got to know a lot of the nurses,

Dr. Nicole (00:33:11): NICU nurses are angels. They're

Kerry (00:33:12): Just, they're angels. And a bunch of them stepped up to be her primary, which meant that she had the same nurses as much as possible. So she had four primaries, two nights, two days. So most of the week we saw the same faces. Nice. Even people who weren't her primary, they would keep the same people on her case. And when they gave us a diagnosis, we had a case review with the doctors, her primary nurses, the nutritionist. I mean, there's a bunch of people in this room that charge the nurse manager. And everyone was just like, what can we do to make this easiest on you? What do you want? What can we do? And so she was on the vent from the MRI, and she hadn't come off of it because they tried to take her off of it, and she had trouble breathing on her own.

(00:34:08): So during that meeting, we decided we're going to leave her on the vent. We're going to do genetic testing. We're going to wait for that genetic testing to come back, and then we're going to use that information to make our final decisions on what we wanted to do. So that left her on event for two weeks, which was really hard. That is hard. Yeah, it's hard to hold your baby when they're on vent. Even harder when they're having seizures. They were really nervous about her excavating herself because it was hard to get it in. So that was probably the hardest part. But during that meeting, they also asked us, is there anything you want to do? And I said, I want to get her outside. I want her to see outside. So they had this really nice courtyard and this part choke me up a little bit, but they were amazing. They had to wheel her out on her vent. It took a respiratory tech to a doctor and two nurses, and they did that for us several times. And when she got outside for the first time, it was the calmest she had ever been, and she was just looking around and listening, and it was the best gift they could have given us.

Dr. Nicole (00:35:25): Oh, that's really, how can we not tear up with that? My goodness. Okay.

Kerry (00:35:29): Yeah. So that was a really special moment for us. And at this point, also, they didn't think she was going to come off to the vic. So that was really important because we didn't think we were going to have that opportunity anywhere else. So the testing came back, the nothing popped. There are a couple genetic conditions that caused this syndrome, but we didn't have any of them. So it's an unknown cause, which was, at first, it was kind of a relief because I'm like, okay, if we want to have another kid, we don't have to do IVF.

Dr. Nicole (00:36:14): Sure, right.

Kerry (00:36:16): But then when we actually got into the depths of having another kid was like, oh, I wish we could test for this, and no.

Dr. Nicole (00:36:27): And so then what happened between NICU and taking her home? How did you come to that decision?

Kerry (00:36:36): Yeah, so there is a palliative and hospice care pediatrician in town.

(00:36:46): So they came in and they met with us, and they really talked over all the options. And one thing I'll say is our NICUs doctors were so great in that they kept telling us, ask every question you have, ask every question you have because you have us here now, and we'll answer your questions. And so we asked everything we could think of. Is there anything that could this have been the cause I got to run through all those mom thoughts of was that one time that I brake really hard. The cause of this was the covid vaccine that I got, the cause of this was you just got to run through all of those things. And they were so patient with us and answered all those questions. And as the team answered all our questions of, if we were to have another child, what would that look like?

(00:37:40): Would this happen again? What are the chances? So they ran through all of that with us. And then the same thing with this hospice team. So the doctors gave us our options, like you could put her on vent and take her home on a vent, or we could take her home in hospice care. And we got to run through with them. They spent a lot of time sitting with us and answering our questions of what does it actually look like to be on a vent? What does that mean? And ultimately, we decided that that wasn't fair to her, and it wasn't fair to us because again, there's no way to control these seizures. So putting her on vent would just prolong her experiencing an endless amount of seizures, and it was going to tie us to the house, so she wasn't going to be able to leave the room that the vent was put in. And again, as people who love the outdoors and see that as such an important part of life, being stuck in one room, just constantly having seizures, that to us didn't feel like a quality of life for her that we wanted to expose her to. And that's such a personal decision, and everyone's going to make a different one, but for us, it wasn't the right one. So then we talked about how we would get her off the vent and what that would look like.

(00:39:25): And again, our hospital was awesome. So they had this hospice house, it's called Pepe's House, and it's on the hospital campus, but not attached. And we decided that we would extubate her there because we didn't want to do it in the NICU where we had our own room. But there's mirrors. I mean, there's windows everywhere. It's not a very personal space. It's very medical. It's a hospital room.

Dr. Nicole (00:39:55): It's an ICU just for babies.

Kerry (00:40:00): The one thing I hated about this hospital is there were no windows to the outside. So we're in this little cave, and that was rough

Dr. Nicole (00:40:06): On us.

Kerry (00:40:08): So we decided we'll take her to Pepe's house, and that way the room that we would exe her in, there's a courtyard right off of that. So we could kind of just take her out there and spend some time. And we thought we were saying goodbye there.

Dr. Nicole (00:40:23): Right, because you thought when you extubated her that she would peacefully pass away or right after she was extubated,

Kerry (00:40:31): That was the doctor's best guess. And this is a neurologist, the NICU doctor, the pulmonologist, we had talked about trying to give her the best chance to make it off the vent. So we actually stopped one of the seizure medications or two of them to help her with that one that suppressed respiratory. And another one that I thought was making her throw up a lot. And it turns out it was so, yeah. So we transport her over there. It took a transport team, so they had to put her in the thing. Put her in, yeah. It was the whole thing. And then one of her NICU nurses, or two of her NICU nurses came over and volunteered. They were there to do it and be with us. And we had her palliative nurse, and they pulled the tube out and she just started breathing.

Dr. Nicole (00:41:20): Wow.

Kerry (00:41:22): She was breathing the best she had ever breathed. She was just like, thank you for, I don't know what happened, because she had been on oxygen. If she wasn't on the event, she was on Austin. And then they pull it out and she's just breathing. And we were all just staring at each other, what is,

Dr. Nicole (00:41:39): What's happening happening?

Kerry (00:41:42): And we had brought in a photographer that now I lay me down to sleep. They do photographer photography for stillbirth. We brought them in and they were doing photography for us. And again, we thought we were saying bye. And then the day goes on and the nurse says, she's doing pretty well. So this was a Thursday. She said, if you make it through the weekend, then we're going to send you home. The rollercoaster continues because we were not expecting to take her home. And so then that was a whole nother rollercoaster of emotions of we're so happy that we get to take her home. We're happy that we get more time with her time without tubes and everything. And also just a ton of fear because now how much

Dr. Nicole (00:42:28): Time

Kerry (00:42:30): Had fragile child at home and how much time and what is this going to look like, and are we able to do this? We've had the care of Nikki staff, they've been caring for her, and now we have to take this on all by ourselves. So she made it through the weekend, just great. So now she's completely off of oxygen. She's doing great. I mean, she's still having a lot of seizures, but for her, she's doing great. And so we went home and then she got to meet our dogs, which was a really big deal to us. And also, this was the summer in Tucson, so we talked about how you can't go outside, but nature gifted us a beautiful monsoon season. So it rained every day, and we got to run outside after it would stop raining. We'd go outside, we'd take her on stroller walks, and we had another six, seven weeks at home with her.

Dr. Nicole (00:43:29): Wow. Another six or seven weeks.

Kerry (00:43:33): So she ended up passing away a couple days after her three month birthday.

Dr. Nicole (00:43:39): And then she declining during that time? Or was it just one day? She just peacefully passed away.

Kerry (00:43:50): So she liked to do the unexpected. That is one thing I'll say about her. That kid did the unexpected, right? She came up with it. So one day she threw up and she stopped breathing, and she stopped breathing for four minutes. And we thought, okay, this is it. My husband and I are crying. We're calling hospice in to declare her. It's the most upsetting thing. And then all of a sudden she started breathing again. And so she did that to us three or four more times. And then eventually, one of the times she did that, then she started breathing again, but she didn't fully recover, and then she kind of just peacefully passed from there.

Dr. Nicole (00:44:34): Okay. Yeah. And how helpful was the hospice staff?

Kerry (00:44:39): Oh my gosh. They were great. Every step. Everybody was great, but the hospice staff was really great, and that linked us with some really great services.

Dr. Nicole (00:44:52): What kind of services?

Kerry (00:44:54): Hospice. The doctor would come in and visit us once every week or every two weeks. I think she came. We had a hospice nurse that came every week. We had a hospice social worker who came and just checked in on us. That one wasn't my favorite, but I think it's probably helpful for people. And then the big one is we got a hospice therapist. So once she passed a bereavement therapist, and it took a couple months, but finally we made that call to talk to that therapist and Mary Kay was fabulous, and we would do it together, my husband and I, and it was so helpful. She was great.

Dr. Nicole (00:45:46): That's amazing that you had those resources and did insurance cover all of that?

Kerry (00:45:50): Yeah. Well, and so that's the other thing about hospice that's great, is somehow once you're on hospice care, everything becomes free. I don't really understand it, but I had a huge hospital bill from my actual hospital stay and my insurance, but then everything else

Dr. Nicole (00:46:09): Was covered. Okay. Well, that's good. At least you didn't have to worry about that financial thing for paying for all of that. No. Do they connect you with other families or anything, or have you connected with any other families who've experienced this sort of,

Kerry (00:46:25): They did not, but I had this acquaintance who had lost their child, I think five years before us, that I was like, I had met them at a wedding years and years ago, a friend of a friend, and I was friends with them on Facebook. And five years ago, they lost their fin to a genetic disorder, and he passed away around three months old too. And so I can't remember. I think I reached out to them or they reached out to me. But we've been really connected ever since then. So we text, we message, we are just in contact with each other, and they were such a helpful support system for me. And they had to make a lot of the similar decisions, like vent and all of that. And then they actually had, their second child was born right before Finley was born, so we kind of have this

Dr. Nicole (00:47:20): Gotcha. Okay.

Kerry (00:47:22): We're like five years behind them type

Dr. Nicole (00:47:23): Thing.

Kerry (00:47:25): Yeah. Okay.

Dr. Nicole (00:47:26): And so during that time, were there things that, I mean, you mentioned some of the helpful things, the social work, well, the hospice, the NICU nurses and things like that. Were there any other things that were helpful that, I mean, did you go back to work?

Kerry (00:47:41): No. So I ended up quitting my job, which my job was really hard and stressful, and it kind of put everything into perspective of me. I needed new,

Dr. Nicole (00:47:48): This is not the way

Kerry (00:47:49): Forward in

Dr. Nicole (00:47:50): Life. Okay, gotcha. And then I'm actually

Kerry (00:47:52): Going back to school. But yeah, the other thing that is really helpful is we have a really great community here. So my husband and I both play ultimate Frisbee and well, he doesn't play anymore. I still do. Anyway, so that is a really good community of people. You have your teammates and all these people, and they were so, and it gave me something to go back to as well, but people were bringing over food. They were offering to walk our dog. They were just checking in on me. We got to bring Finlay over to one of their houses for dinner and played board games with them. And just,

(00:48:30): I think sometimes people think when someone's going through stuff like this, you have to do something really big for them, or you have to engage in these really hard conversations or different things. And that's really not what we always need. Sometimes it's just nice for people to not act like everything's normal. It's not normal, but to still offer to hang out with you, offer to talk to you, offer, just I went back to playing Ultimate. And some of the nicest things people did was just give me a knowing face look and a hug. And then we moved on and we played Ultimate. It didn't have to be like, you're going to go into this grieving process with me. You can just, if you used to invite me out to lunch, just invite me to lunch still.

Dr. Nicole (00:49:19): Gotcha. Gotcha. And then was there anything that people did that was harmful that was like, please don't do that?

Kerry (00:49:27): Not very many people, but

Dr. Nicole (00:49:29): Well, that's good.

Kerry (00:49:30): The biggest thing I think though, is some people, it's a really hard thing to accept that this new life was born incompatible with life. People don't want to accept that, but that was our reality. And so sometimes people, especially when we're going through the process of getting our diagnosis, and I would say things like, yeah, it's looking really bad. We don't know what it is yet, but it's not good. They would be like, don't say that it's going to be okay, and it's not going to be okay, because we knew it wasn't going to be okay. The doctors were telling us it wasn't going to be okay. So it's not always helpful to have this positive. Everything's going to be okay, outlook when we just know it's not. Some people would try to ask me what we were doing to help her with her developmental skills. Again, it's like nothing, because she's not going to develop. What we're doing is spending as much time as we can holding her, making her as comfortable as possible, taking a lot of pictures, being with her, having our friends meet her. But development is not going to happen. And then the last thing is people tried to suggest other doctors,

(00:50:52): And it's just like, Tucson's not a giant place. Did we have the best minds in the world on this? Probably not. But our doctors were really good, and they were very compassionate. And in the end, it wasn't going to make a difference if this was a cancer diagnosis, maybe. But there was, the thing with this is, is there's no cure. All you can do is manage symptoms. And so it was kind of hurtful for them to suggest that we weren't doing the best thing for our daughter. Because you can bet if there was a way to get a better doctor and that was going to do something, I would've been making every phone call and knocking down every door. But that just wasn't it. So I guess to boil that down, it's like, listen to the people that you're talking to and don't give that unsolicited advice and just accept with them what is happening.

Dr. Nicole (00:51:54): Yes, yes. Absolutely. Absolutely. And then as we're getting towards the end here, I know you've since had another baby. And how was that pregnancy and birth and that postpartum period for you? I know it's hard to sum up in a few minutes, but were you scared? Were you, especially since it was another girl, were your thoughts

Kerry (00:52:20): Another girl with a due date? Exactly. Two years and one month apart? Yeah, so that was hard. But I spend a lot of time trying to, and my husband and I, we talked a lot about what do we need to get through this? And so we had a preconception appointment. We talked a lot about what are the things that are going to get us through this? And we spent a lot of time doing that. And so that was really helpful. So we knew that we wanted to be treated like high risk, even though technically we weren't because there was no indication it was going to happen again. And everyone had told us, and the doctors were on board with that. So we got treated high risk, which meant we got to have extra scans. We did N MSTs. Thankfully, Quinn moved a ton in utero, which was lovely because Finley did not move that

Dr. Nicole (00:53:12): Much.

Kerry (00:53:13): And so that was an everyday difference. I spent more time during this pregnancy connecting with her. I was really busy when I was pregnant with Finley, and so I didn't notice some of the decreases in movement that I think she was having. They weren't super noticeable. But I think had I really been tuned in, maybe I would've noticed. And really, that wouldn't have done me any favors because then I just would've been worried for longer.

Dr. Nicole (00:53:39): But

Kerry (00:53:40): It was nice to have that reassurance. With Quinn, we changed providers. So the first doctor was the one that did my C-section, and she's a great doctor and she's lovely, but I could tell that she really had a lot of feelings about it too. She had been the doctor that delivered Finley, and she seemed concerned and was questioning, I think whether we were ready to have another one. And at 36, it wasn't an option to wait too long. And I also don't think that's something you get over. So time wasn't going to do anything. So yeah, so ultimately I changed providers back to the same group. So I wasn't with the midwives, I was with the obs, but they're part of the same practice. So I still had that kind of OB high risk lens, and we were monitored still. And so yeah, I think just knowing what we needed and then advocating for ourselves to get that made it doable.

Dr. Nicole (00:54:44): Gotcha. Gotcha. And did you opt for another c-section, or did you have a vaginal birth?

Kerry (00:54:48): I wanted a vaginal birth, but during one of the nst, Quinn just wasn't looking so great. So 10 days before her due date, one of the doctors was like, we think we should just go ahead and do a repeat. And she was also a big baby, and I also had excess fluid. Again, that was a little triggering when the excess

Dr. Nicole (00:55:09): Fluid, I'm sure. Yeah.

Kerry (00:55:12): Yeah. Turns out I just didn't make a lot of fluid.

Dr. Nicole (00:55:14): Okay. And big baby, how big was she?

Kerry (00:55:17): She wasn't that big. So Quinn was nine pounds, three ounces, 38 weeks, and Finley was born eight pounds, 12 ounces. Okay. So not gigantic, but

Dr. Nicole (00:55:29): Sure.

Kerry (00:55:31): Yeah. So because was, I knew I didn't want to do another induction because I did not like that process. So even though they were willing to do it with me, that was kind of my baseline of whether to get a VBAC or not go for the VBAC or not was induction. And I was not going to do that. Got it. Okay. And waiting for my C-section, I actually went into labor, but then it kind of slowed up and I didn't have my snacks with me, and I was really hungry, and I had to have the monitors, the continuous monitorings again, and the tape one didn't work, so I was really stuck. So after about 10 hours of that, I was like, I'm out. Just do it.

Dr. Nicole (00:56:20): And then Quinn came out screaming happy. Any issues or concerns or anything?

Kerry (00:56:26): Thankfully not. She came out great. Apgar scores, she came out just fine. Didn't have to go any nicu, stay. Okay, nice. We had a little bit of problems breastfeeding, but she was latching. It just was a shallow latch, so I didn't have to worry. And then she's just been a little wiggler, screamer, happy baby. So it's been really great. Yeah.

Dr. Nicole (00:56:51): Well, good, good, good. Well, then as we wrap up, what is the one favorite piece of advice or one thing you would say to families who are expecting right now?

Kerry (00:57:00): Yeah, originally I was going to say bring snacks, but I think that more general advice, I would say is get to know yourself and what it is that makes you happy and what it is that makes you feel calm. And just know yourself because that's going to be the thing that, especially if you're having a hard time that gets you through the most postpartum is hard. And so that's also a time where it's good to know yourself. For me, I know that walking my dog is my joy. And so those first six weeks when I was recovering from Csection were really hard, but I just kept having it in my head. This isn't forever. I'm going to get back to those things I enjoy. And as soon as I could, I restarted those, and then I felt so much better. Nice. And knowing what we needed through the pregnancy to feel okay helped so much. And in the NICU, knowing we don't want to guess a diagnosis, let us know when helped us a lot. So just getting in touch with yourself and know what you want, and then advocate for that.

Dr. Nicole (00:58:09): Excellent, excellent. All right, so where can women connect with you? You can say nowhere, if that's an option, or if that's the option.

Kerry (00:58:19): I'm on Instagram. What is it? Cocoa butternut. My nickname's Cocoa.

Dr. Nicole (00:58:26): Okay. Alright. Alright.

Kerry (00:58:28): Yeah, and that's about it

Dr. Nicole (00:58:30): Really. Okay. Well, we'll put that in the show notes. Well, thank you again for agreeing to come on and share your story and share Finlay's legacy with everyone and how she impacted your lives and just helping people who may also be experiencing a difficult time.

Kerry (00:58:49): Yeah. Oh, and just one last, yeah, go

Dr. Nicole (00:58:52): Ahead.

Kerry (00:58:53): Plug is, we do a thing every year on her birthday, April 22nd, but you can do it anytime. It's just take a little time outside to just take in your surroundings, enjoy it, whether it's like coffee or a hike or whatever. It doesn't have to be anything big, but we have everyone, our friends do that on her birthday.

Dr. Nicole (00:59:12): I love that. I love that. Just

Kerry (00:59:14): Take it to a little moment to enjoy.

Dr. Nicole (00:59:16): Yeah. Yeah. Absolutely. Absolutely. All right, well, thank you again, Carrie. I really it. Thank

Kerry (00:59:22): You. Have a good one.

Dr. Nicole (00:59:29): Wasn't that incredible? I so appreciate Carrie coming on and taking the time to share her story. I know that's not easy, and I really, really appreciate her doing so. Now, after every episode when I have a guest on, I do something called Dr. Nicole's notes where I talk about my top takeaways from the conversation. And here are my Dr. Nicole's notes from my conversation with Carrie. Number one, just a gentle reminder that ultrasound and genetic tests are not perfect. They don't show everything. Yes, they show quite a bit of things. Yes, they are quite helpful, but they don't show every possible thing that can happen. That's a problem during pregnancy or after birth. Number two, I really hate how much Carrie had to advocate for herself about things, and this was even with working with midwives. She had to advocate for herself about eating during the process.

(01:00:21): She had to advocate for herself about monitoring, but that is the unfortunate reality of giving birth in the hospital is that you just may need to advocate for yourself. I so wish it was not the case, but that's just how things are. So you really need to be prepared to do that. Of course, listen to the podcast is a great way to do that, but you also need childbirth education. That is a necessity. I have the birth preparation course, my childbirth education class. You can check it out, dr nicole rankins.com/enroll. But there are many options out there. I just encourage you to please, please do childbirth education, because it's really important to help you advocate for yourself, and it'll be something that you can hold onto if things do take a turn that was unanticipated, unexpected, or not what you wanted.

(01:01:16): Number three, know yourself and know your values. Carrie and her family, her husband, they were very clear on the things that were important to them. For example, nature was really important to them, so they really wanted to get their baby girl out in nature, and they were able to do that. They really prioritized spending time with her and doing so in a way that felt good and right for their family. They didn't take her home on a ventilator because then she would have to be confined to that room and they wanted to be able to take her out and experience the things that were important for them and their family and make the most of the time that they had together. They stayed with the team that they felt comfortable with. Even though they had a rare condition, they could have gone maybe to try to get an opinion at a bigger place or that kind of thing, but they stayed where they felt comfortable because that's what worked for them.

(01:02:13): They thought about how they wanted to approach the next pregnancy. She decided to be treated high risk because that's what felt good for her. Not necessarily because the condition was likely to recur, but that's what she needed to have her own peace of mind. She also changed doctors as well for the next pregnancy. Please remember that you are an expert on you and your expertise matters and is so critical that you bring the expertise about yourself to the table because that is what is going to help you. That is what is going to sustain you when things get challenging. And then the final thing I'll say is that it's hard to know sometimes what to do for people who are in grief or who are having a difficult time. Don't avoid them. All you have to do is be present. It doesn't have to be anything grandiose or complex.

(01:03:07): Just be present and don't give any unsolicited advice. I learned in another episode. Something that is usually typically quite unhelpful to say is that this is God's plan or this is the way it was supposed to be. Those kinds of things just show up and be present. Alright, so there you have it. Please share this podcast with a friend. I appreciate you sharing it. It helps us show to grow, helps me to reach and serve more pregnant folks. Be sure to subscribe to the podcast also wherever you're listening to me. And if you enjoy the podcast, leave a five star review, an Apple podcast that also helps the show to grow and helps other women to find the show. Come follow me on Instagram. You can get great information about pregnancy and birth there as well. Nice little bite-sized pieces of information. And I'm on Instagram at @DrNicoleRankins. So that's it for this episode. Do come on back next week and remember that you deserve a beautiful pregnancy and birth.