Diving Deep With Jillian: Pregnancy and Parenthood With Paraplegia

Leah Holderbaum: Welcome to Ally, a peer-to-peer, coast-to-coast networking community where people who use medical supplies share real-world tips, shared experiences, and support. Today we are here with Jillian yet again talking about parenting with paraplegia. Jillian, how are you? I'm wonderful. A little sleep deprived, but everything's good on my end. I'm glad to be back. Awesome, awesome. And for people who have not listened to our podcast yet, can you give us a three sentence overview of who you are, how you were injured, and catch us up to current state? Absolutely. I was injured when I was twenty three years old. I fell off of a third story balcony and sustained a T four complete spinal cord injury. Fast forward 10 years and I've done a lot of really cool stuff along the way. Scuba diving, which we talked about in our first podcasts, some really cool adaptive sports. And our latest adventure has been getting pregnant and having a little baby girl. She is now six months old and it's been an amazing experience. I'm really excited to talk about it more with you today. Yes. All right. So tell us maybe we start at the beginning and tell us about getting pregnant. When in life did you decide this was an adventure that you wanted to embark on and how that journey went getting pregnant. When I was first injured, I think a lot of people asked me, are you gonna have kids? Are you gonna be a mom one day? And that was something very far from my mind. but the doctors I remember were very, very clear with me that it was still possible. It could absolutely happen the normal way. so I spent some time thinking. Again, I was in my early 20s, so it wasn't part of my plan in the immediate future. But I came to realize that I would probably need more help than I would like to admit. And ultimately I felt like my choice to have kids or not would depend on the partner I end up with. I'd want to be with someone who doesn't keep score, who doesn't make me feel any guilty or anything for asking for help all the time. and that's the guy I ended up with. I met Jason th three and a half years ago. It's our third wedding anniversary in a few days. and we knew right away that this was meant to be he actually had a friend in high school who was in a car accident and sustained a spinal cord injury. So he had gone through the whole rehab process. He knew that being in chair wasn't a big deal. And it didn't have a major impact on my life. so we were able to just kind of meet and run with the relationship and not have to spend any of that time I was spending proving my independence to someone I was dating. so it was an amazing experience. And we've always felt like such equals in the relationship and he helps me out when I need it. But I also do just as much for him. So it was pretty early on when we said, Let's get married. I want to start a family with you. I want to build on your family because he had a he was five or six at the time, might not him, little declan from his first marriage. And I got to step in as stepmom and kind of get my toes wet in the whole big bad world of parenting. that was a pretty big adjustment for me, but it was really fun to like see him grow. And once all of our big adventures were done, like scuba diving and some travels we did last year to Ireland and Iceland, we're like, all right, let's try. Just timing my like cycles and temperature and stuff. And it happened very quickly. It happened like on the first month. So I had reached out to a few other women, just on social media who were also paraplegics who had given birth in the past few years. just to say, Hey, I'm newly pregnant. Do you have any tips or tricks? and a lot of them were able to tell me like the different transfer tips they use when they got. pretty big with their belly. Some of them told me their birth stories and how delivery went. And it really put my mind at ease. that I just I kind of had that network to lean to and ask any questions that came up. but I think we talked about last time in the podcast about pregnancy, how important it was for me to find a Team of doctors who understood me and my injury and my independence. and I was able to find that. And I feel like that made a huge, huge difference in the entire pregnancy. It was amazing. Now remind me, how many doctors did you have to go through to find Yeah. I think I ended up with three doctors. The first care practice I just didn't feel good about. I would spend like 45 minutes waiting in an exam room that I couldn't get onto the table. And they weren't sure if they can even get me into an accessible one. so I moved on to another practice and it was a wonderful doctor, but she didn't feel like she had the experience that she thought I might need and wanted me to be with a team that absolutely was well versed in things like. maybe having to use force with delivery and something more high risk. So she was able to do all this research and refer me over to a new practice. and that became my home. It was an amazing group of ladies. And I looked forward to my appointments every time. they did everything they could to make me feel comfortable. If I was in a in a room with an exam table that was too high and I needed to get an exam. We would just move to the ultrasound room. And it was a super easy transfer for me. and it was an all-around great experience. I like the fact, honestly, that you didn't have a positive experience at first because I think it is so unusual to have a positive experience for your first experience with with that. And the transfers and the medical team who are confident in your care. I think it's very important for people to know that it's not necessarily easy, but keep going because there are practitioners out there. It's not a hopeless task to go out there and find somebody who who can fully take care of you. That's wonderful. So moving on to the actual pregnancy. so you did it the natural way. Congratulations. And when you did get pregnant, how did the pregnancy go? Especially like when you were very pregnant and transverse got hard and cares got hard. How was that? My entire pregnancy I would describe as typical. Everything was so normal. And I didn't know beforehand what it would be like, but I had the app that talked about the milestones and the different things I would be experiencing. And I was right in line with everything. I wasn't sure about the sensation and feeling kicks and stuff. and I never ended up feeling them internally, but I always had my hand on my stomach. and I would feel her kicking around all the time and moving. And it was such a great experience. and when I started to get a little bigger, I mean, luckily it was just a little bit every day, right? So it's not like you go from having no belly to a big watermelon in your stomach and you immediately have to figure out how to transfer. I was able to kind of just make little tweaks every day and it got a little bit harder and harder. luckily I never got too big, big. and so I didn't really need to make any major adjustments to like getting in out of bed. My bed was level with my chair. So it was Pretty easy just pop over there. I did end up putting like a little transfer bar on the toilet just so it was a little safer. and I didn't have to worry about that. And then in the car, I was always able to get my chair in and over my belly. It helped out. Yes. That's impossible. it helped out that it was a super light carbon fiber chair. So it was if it was my big Old titanium chair, that would be a different story. but that helped me maintain my independence the whole time. getting in the car, sometimes it c took like a couple of tries. I've got an SUV, so it's a little bit big higher up to get into. And whenever my husband arrives, he would kind of give me a little boost. Yeah. but I would just take it slow, right? I'd grab on the emergency. handle up there and swing in. And sometimes I'd get halfway in, take a second to pause and then finish up the transfer. but it never got too hard for me to do on my own. and I felt super lucky about that. That's awesome. And what about like your bladder management during that process? Cause it has to be harder. Yeah. I mean, as a female, you can't really see your anatomy when you're cathing. I think when I first was injured my first few months out of the hospital, I used like a mirror to help guide the catheter in. But after the first six or eight months, I kind of just used muscle memory and my like the touch to get it in without contaminating the catheter. And that's kind of had the same thing that happened with pregnancy. My stomach just got a little bigger and bigger along the way. when I was home, I would like use a knee spreader to help just keep my knees apart, make it a little easier. but when I was out and about, there really wasn't much of a change from pre-pregnancy. I was on antibiotics prophylactically to try to prevent UTIs while I was pregnant. And that was Awesome for me. I I was pretty chronic getting like getting pretty chronic UTIs the entirety of my injury. And so having that one less thing to worry about is really nice. and I did have to change my bowel routine. we might have talked about in the last one, but I was using the magic bullet beforehand and the doctors recommend I try something a little less intense. so I was able to switch over to enemies and it has been a piece of cake since that transition. and it's been everything's been really great. Yeah. honestly, I I expected more change in my routine in regards to that, but really everything was pretty status quo. That's amazing. All right. So let's talk about labor and birth. Okay. My I had a friend who has had two children. And I remember her absolutely worrying about having her kid in her sleep because she she has the same injury level as you do. And so how was that for you? it ended up being super great experience leading up to delivery in the last month or so of pregnancy. I talked to my doctors and I said, How am I gonna tell if my water breaks? I experience incontinence from time to time. So how the heck am I supposed to know whether that's my water breaking, whether it's a bladder leak? And they were kind of stumped. They were like, huh, let's think on this. And they're able to come up with a solution, and there are these little like pH papers that can tell whether something's amniotic fluid or And so my last few weeks of being pregnant, they sent me home with a whole roll of those test strips. And so I was pretty diligent about like testing if I ever had a leak. And it gave me so much peace of mind. and it was a really cool solution that they were able to come up with. so that was awesome. That was my one worry. And then my second worry is what are contractions going to feel like? since I wasn't experiencing like the sensation of the kicks and stuff. I didn't know how if I would be able to tell they were happening. again, if it would happen in my sleep. So About two weeks before my due date, I started feeling a little bit like shortness of breath. It felt like some tightness in my stomach and abdomen. and it was a little consistent and that I leaked and I tested the test strip and it came back a little questionable. So I ended up calling the doctor. It's like as they were closing for the day. So they just said Go over to the hospital, let's get you checked out. Better to be safe than sorry. So I got all checked in. It was a honestly a great like trial run because I was able to see where to park, go up to the room, make sure everything was all nice and accessible and everything. And it turns out I just had like a bacterial infection that was causing contractions. And so I Was able to just get on the right antibiotics for that, sent me home that night. And like I said, it was a perfect trial run. and about a week or so later, I had a doctor's appointment scheduled that day just for a check-in, but I was still working. and I was actually with one of the med supply managers, Dawn, on a call with her. Doing a bunch of trainings because I was trying to prep for being gone for maternity leave, who was going to take over all of the reporting that I was supplying to the medical supply team. And we're on the call. Right before the call started, I started feeling some contractions. It was that tightness in my stomach, kind of crampy. I was getting out of breath. So I was like trying to start timing my contractions and stuff on my little app. But I was on this call and I'm presenting and It was hard to do all at once. And at one point she had asked, she's like, Are you okay? You look like you're having some trouble breathing. And I was like, I think I might be having contractions. We'll see after this call. So I was able to get through that. And luckily, after that like week before kind of test run to the hospital, we kept the car packed. so I was able to grab my like last bag that I needed to go, like in case this this was it. I loaded into the car and then I drove to my appointment. my husband wasn't even gonna go to that appointment because he was like, We both said, This is just a check-in, it's gonna be nothing. Like, you don't have to bother. So, you know, rushing I told him that was like, I think I'm having contractions. And so he ends up meeting me there. We go in and they hook me up to the monitor and they're like, Yeah, you're having some contractions and they sent me over to the hospital next door to Have a longer test. so got all checked in, got all settled in, got to meet the whole team. It was everybody was so amazing. And they ended up keeping me overnight because they didn't want my husband having to like deliver a baby while I was in bed. so Woke up in the morning, got checked out, and they said I was moving right along. So they were gonna give me an epidural right away. And that was because they wanted to everything they can to prevent autonomic dysriflexia. Got it. I was gonna say, all right. So yeah, my doctors and I had talked a lot about the effect the impact that autonomic dysriflexia can have on someone with a spinal cord injury. It's where you're Blood pressure shoots way up when it's like something below your level of injury is wrong with your body. So it's trying to tell you something's wrong. really bad situations of it, you can like stroke out. And so it's better to make sure it's well managed. And luckily, my care team was very very well versed in all of that. So they will give me the epidural and Things kind of just progressed along the rest of the way. It was funny because up until I had the epidural, I wasn't really feeling the contractions too much. They weren't painful, right? It was some crampiness, some a little bit out of breath, but Beesha and I were just kind of hanging out all night. And I got like a full night's sleep. It was pretty great. this my last pretty full night's sleep for a while, right? I get that. once we got the epidural then I would just kind of get checked every so often things kind of stalled out a little bit. So they gave me some Pitocin. move contractions along. Did your water ever break? No. They ended up breaking it for me. Yeah. Neither did mine. Yeah. Yeah. The whole water break thing. You always think that that's gonna be the precursor. Yeah. Yeah. The majority of the time it happened, they have to do it in the hospital, which news would have yeah, right? It would have kind of eased my mind a little bit. but it was great. The nurses just checked on me. They helped me move into all the different positions that I needed to. everyone who came in the room was aware of my disability and kind of tailored their approach to it, but they never like acknowledged it, but kind of addressed it in a way that didn't need to be addressed. I've had some people who are just curious about it, right? And they want to talk about it. And when it has nothing to do with my the reason I'm at the doctors today. Right. Right. so that was an amazing part of being at the hospital. And so back to the back to the good part. after, I don't know, and like three or four in the afternoon. They had put me in these different positions to try to get the baby like to move down the birth canal. And they saw some activity on the monitor. They came in to check how things were progressing. They're like, I think I see a head. We're gonna call the doctors in and we're gonna get stuff moving. And so turns out the baby was able to like completely progressed down the birth canal on her own. So they didn't need to use forceps or anything to help her down. So that was a great relief. they the doctor came in, everything was going well. She ended up using a vacuum, which I thought was this big scary thing, but it was like a tiny little handheld pump. okay. I always I I never knew what a vacuum was. So I just imagined like a huge exactly thing to the wall and like Teeny tiny little handheld sangle. Exactly. Right. And so instead of me pushing, they timed with my contractions. They just used the vacuum in two like pushes, contractions, vacuums. The baby came right out. healthy baby girl Grace. She was seven pounds, three ounces, I think. it was perfect. It was awesome. and it was a painless experience for me, luckily. I was really glad to have avoided a C-section. I was prepared and my doctors were prepared if we needed to do that for the safety of me or the baby. But I was worried about like how much harder recovery would be if I have a big wound below my level of inderate that I have to take care of and worry about my transfers and everything and picking the baby up. so I got to avoid all of that. and yeah, the baby got placed on my chest and it was the best thing in the world. I haven't been the same since. I love it. I absolutely love it. So with your injury, did you get hardware in your back? I did. Yes. Were they concerned about that with epidural? Great, great question. They Had me meet with the anesthesiologist. and I talked to that team in pretty heavy detail a few months before my due date. And we talked about my hardware, where it was, and how likely they thought they'd be able to insert an epidural. and luckily everything worked out perfectly. But yes, it was really important for us to talk to them ahead of time and just make sure everybody knew what. The hardware situation was before the time came. Awesome. Yeah. I'm so glad to hear You're really lucky. Yeah. Yeah. Especially that they thought about that ahead of time. I mean, you think that you would think about that ahead of time, but you just, I guess, never know. Right. so with a T4 injury, sitting balance depends on your arms to balance yourself. How did like, you know, how did like Up your child go and how was breastfeeding and things like that? That's where a lot of the fun little tools and adaptive products came in. and that's I got to learn about that pre-injured pre-birth from all the other wonderful ladies in the community. so first up, I'll talk about the snuggle bundle. so it's this cool little blanket thing. that has an extra kind of head brace thing. and it's got handles on both sides. So when I had the baby in my lap, I would put her head in the little basket and then just wrap her up like a little burrito, take her from my lap and put her right on the ground. And then she would play around, have some floor time, and then I'd just pick her right back up. so I was able to hold on to my r hand rim with one hand and then lean down and get her with the other. I still use that to this day. I used it a couple hours ago before I came here to get her up off the ground. and that made me super independent with floor time and all this stuff. I got a breastfeeding pillow that has a clip on the back. So it kind of straps to you. And so that I I still I use that every day. And yep, like it was great for breastfeeding, but it was also great for just moving her around. Right. So when she's tiny, she just fit perfectly in the pillow. And so I was able to use both hands to move her around and just be on my lap. And I would have it has a little extra pillow on the outside of it. And so I would like lean her up against it and she would like look up at me. We'd walk around the kitchen and stuff and take a look at all the different things that they're on the walls. but that that was so, so useful. yeah, those two products I use every single day. I had bought like a nice Moses basket. And I thought I would be able to carry her around in that when she was little. just be like really easy to like. pick her up and off the ground, in and out of the changing table, but it was a little too big for my lap to like comfortably push around with it on. And the breastfeeding pillow just worked so well to carry her around on my lap. so I didn't end up using that much. my changing table I used was a standing desk. because a lot of changing tables, they're just attachments to the dresser. So I wouldn't be able to kind of roll under it and be right above her. so we just have a small little standing desk and it's nice and low for me. And when my husband uses it, he raises it up because tall guy. and then my dad was able to take the front frame of our crib off and put it on hinges. So it swings right out. and it was super, super simple and It maintained the integrity to where it can be used again as a toddler bed and everything else it moves into. So baby Grace, she is now about six months old. How is everything returning? Like it took me forever to get rid of the belly. It took forever for me to regain my bladder continence. How are things going with you? Things have been pretty smooth. I mean, like I said, the Pregnancy was smooth, the delivery was smooth. So there wasn't too, too much recovery I had to do. I feel like I bounced back pretty quickly. you're an athlete. I mean, it was amazing when we came home from the hospital. My mom stayed with us for the first couple of weeks, and that just made all of the difference. I feel like I was able to. She took care of me and I just got to focus on taking care of the baby. she's come back and forth a few times to just lend a hand. And it's yeah, it's all been a great experience. She was a good sleeper at the beginning. So I didn't have to worry about like I feel like a newborn who's a good teacher sleeper and a newborn who struggles with sleep, it's a completely different parenting experience, right? Mm-hmm. so I felt very fortunate that I had that on my side at least. but fast forward six months and being back at work, that was a whole adjustment. and but it it felt good to be back, use my brain. but sad to not be with her all day now. she's still home, so I get to peek in on her from time to time between meetings. But It's yeah, it's a lot as any mom, like juggling breastfeeding and pumping and managing all of that on top of the work and the home stuff. that is definitely that like mental load is harder than like any physical recovery that I had. but working through it. Some days are crazier than others, but I've got a great partner who we just work really well as a team together. And if I only have 10% to give, he'll give ninety. And sometimes we're both at 30 and we do our best. And it's only a six percent day, but we make it through together. Mm-hmm. Good. I get those. I get those days. what does that partnership look like when it when it comes to taking care of a kid? The things that come to mind are getting the baby into car seat, into car, getting the baby into and out of things like a feeding chair. Tell me about that. Such good questions. And so it's in the beginning, I was able to independently get her in and out of the car and the car seat because she was light. I got the lightest car seat on the market I could find. It's like six pounds. so I didn't have a problem ha like taking it off of the stroller, putting it on my lap and getting into the car. After month like three or four, she was getting up there and wait. Like she's 99th percentile now in her weight. And she's the chunky baby with all the rolls, and we love it. But it's made getting her in and out of the car really hard for me to do on my own. we switched to a rotate like car seat that does like the 360 rotation. So that when I do have to get her in and out, I can rotate the car seat. To me, and I don't have to worry about getting her in and over and strapping her, like reaching over to get strap her in. So that we thought would solve the problems. And then I try, we got it all installed and I tried to put her in for the first time. And my center of grav like my center of gravity wouldn't let me do it. Yeah. If I'm leaning forward by myself, I can get so far without falling over. My just don't have the ab function. But with a baby, that limits it where I can only move a few inches outside of my center of gravity before I kind of topple over. Mm-hmm. So I don't have a solution right now. I just get really lucky in my husband's home. We kind of coordinate where if I need to bring the baby to go do pickup for school or something, he'll put her in the car seat. Mm-hmm. I can get her out myself. gravity helps. And especially now that she's a little more strong can hold up her neck and sits up by herself. I can kind of just lean in and just kind of layer on me and I'll lean back and I'll have her on my chest. she loves rolling around on my lap, so it works out. and the same with the high chair. I I can get her out by myself. And there's a really sweet spot a couple weeks ago where I was able to get her in by myself. But now I feel like she's a pound or two heavier and it's hard again. And it changes that center of gravity. Right. So I was able to kind of have her chest lean against me and kind of bring my hands over to the high chair. So rotate her in. but when my husband's home and I don't I don't feel like fully confident in it, I'm not gonna. risk anything if I don't need to. but if any listeners have tips on how you or people you know have gotten bigger kiddos in and out of car seats and stuff, I'd all ears. I I know eventually it'll be easier because she'll be able to kind of crawl around and help me help her. but right now it's just that weird spot. Well, and I feel like with with children, there's a a a big spot where they don't understand what you need yet, but they're big enough to I I have a a lower back issue. And so even though I I don't have the center of gravity challenges, I still like had some really like difficult I had some really difficult times with my child because she was just heavy enough that I couldn't do the reach or the whatever I was trying to do, but she also couldn't like help me or she was doing the one and a half two year old thing. I'm not looking forward to that. And you're like, well, stop because I can't I give up. All right, cool. So that's where we are. Right. Universal problem. Exactly. It it is a universal problem. And I'm glad that you have such a a supportive husband who's available and not. Right. And have you have you had any situations where you've been alone and asked others to help you? No, but I know I could. Yeah. A hundred percent. Awesome. so I'd like to ask you kind of two things, and they're going to be exactly opposite. Okay. Okay. What was something that you worried about, but never really came to be a problem when it comes to either birthing or childhood? okay, something I worried about that didn't end up being an issue honestly was the water breaking. my gosh. I was so, so worried about that for I don't know, months leading up to delivery. And turns out my water never broke. Right? They had to break it for me in the hospital. So no worries there. childhood and baby wise. I mean, leading up to her being born, I feel like I was really worried about being able to get her on and off the floor by myself and be able to like spend time with her down there like doing like tummy time and stuff. but that silly little blanket thing helps so much. And it my gosh, it's my favorite thing ever. And it has made me so independent with her in that. It's awesome. And remind me the name of it. It's called a snuggle bundle. Snuggle bundle. I love it. My my friend, when she was preparing to have her first kid, I made her almost that exact same thing. We we didn't it it didn't come to full fruition, but I was like, Yeah, it has to have handles and it has to lay down flat, but then it has to I'm really glad somebody took that off. Yes. My l little OT heart just sings with that. and then so conversely, something that you didn't worry about that you're like, that was a big struggle. I thought I would be a lot more independent getting her in and out of the car. Mm-hmm. And not being able to just hop in the car with her and go run errands or something has been really hard. it's it's a big bummer, right? Like I I feel like I'm so strong and everything, that I can lift her up and all this stuff, but not having that center of gravity and not having the ab function really Has a lot more detrimental effect than I expected. I kind of almost wish that my husband wasn't so available because that would force us to come up with another solution. but for now it's working for us. but I think this is the motivation I need to like get back on track and kind of I was talking to some OT friends who were. Trying to think of different solutions for me. And so I want to kind of get something figured out for that. I hope that it works, but from mama to mama, it's all a face. And so this like this short-term problem doesn't last for more than X amount of time. And it becomes another problem. And ever and the problems don't go away. They just change. And they change very often in childhood. So something that you're having problems with now. Luckily you won't have to deal with that again because she's not returning to that phase and it's not a long-term solution that you're looking for. Yeah. Yes. Yeah. It's all short term, you're right. Exactly. Yeah. And it's just a phase and then you go on to the next set of problems, really. If a woman with a spinal cord injury were thinking to herself, I really want to have a child, but I'm terrified, what advice would you give her? I would say spend some time talking to your partner. What are your real fears and how can the two of you work through those together? And then talk to your doctors and see what advice they have for you and your situation and make sure that they're capable of supporting you and give you the confidence you need to feel like you have. you are able to be cared for throughout this whole journey. and then talk to somebody like me. I I almost get emotional because there was a girl who reached out to me on Instagram six or so years ago who was newly injured in the hospital, found me on social media on Instagram, and she was around my age, I think, when she was injured, when I was injured. And I was able to just kind of be a point person for her to talk through all this stuff. There's a bunch of girls on social media who have spinal cord injuries, but she saw that I was back at work and I was working in an office. So we were talking about very specific things about like, how do you manage Kathy at work? What do you wear for pants? Like what makes it easiest for you in those situations? And we talked through all that. And I just got a message from her a few weeks ago saying she's 12 or so weeks pregnant, wants to talk through like what's worked well for me, what hasn't, hear about my experience. So I was able to just kind of share this whole story with her. And it made me so excited and happy and so glad that I was able to be that person to share this story with other people. I love it. I absolutely love it. Find your community. Yeah. I love it. Is there anything that you wish that you had known six months before you got pregnant? So way before in the preparation phase. I wish I knew how well everything would go because then I wouldn't worry. And it's not that I was even very worried about it. I was just unsure, right? There was a lot of uncertainty. Nobody could tell you what this experience will be for your body, whether you have a spinal cord injury or not. and so I'm glad I didn't spend too much time kind of worrying. there was some uncertainty there, but I wish I said like, don't even worry about anything. You're good. That's amazing advice. I like that. I think that's all the time that we have today, Jellyon. But thank you so much for your honesty and your openness and for sharing your experience. And I very much look forward to continuing to be part of your community and your motherhooded journey. And thank you for spending your time with us and with all of our viewers. Thank you so much for having me. I'm excited to share how things keep going. And I last time I had a pretty big announcement. Now I I don't. So happy for things to be status quo for a little while. Yeah. We're just going to keep on talking about mamahood. Yeah. I look forward to it next time. Yeah. Take care, everyone. Thank you for joining us.