Hillary + Beatrice’s Story

We all know that it’s important to stay home right now–it is our social responsibility. The Weidner family is one of a million reasons this continues to be important. Today I am bringing you their story. Hillary and her husband Jordan are not strangers to social isolation–they were put on a year-long lock down after Beatrice had a liver transplant in the first year of life. We are talking about what it’s like to be parenting an immunocompromised child in the current pandemic.

Get in touch with Hillary:

Hi, and welcome to episode 207. Today. I have a chat with Hillary Weidner. Hillary is the mother of three children under the age of five. And her oldest is a transplant recipient. She's sharing her story along with what it's like to parent and immunocompromised child in the world right now. Hi, this is Denaye. I'm the founder of simple families. Simple families is an online community for parents who are seeking a simpler more intentional life. In this show, we focus on minimalism with kids, positive parenting, family wellness, and decreasing the mental load. My perspectives are based in my firsthand experience, raising kids, but also rooted in my Ph.D. In child development. So you're going to hear conversations that are based in research, but more importantly, real life. Thanks for joining us.

Hi, thanks so much for tuning in. I have a conversation with Hillary Weidner today. I've been following Hillary's story for the past several years with the spread of coronavirus. And so, so many of us staying home when we're able to, it's important to stay focused on the reason. And Hillary family is just one of a million different reasons why this is important. I'm so grateful that she's sharing her story with us today, but before we get into today's episode, here's a word from our sponsor. The sponsor for today is Cause Box. And I will be honest that I am very skeptical about endorsing any type of subscription box. So when Cause Box reached out and told me about their product, which is a quarterly curated subscription box filled with amazing products and brands that are all ethical and sustainable. Well, I decided I would give it a try and I'll be honest.

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That's www.causebox.com/simplefamilies, and use the code "simple families". Some exciting news is that I have brought back the masterclass and I have changed the format. So it is now completely self-paced and it also has a brand new name, the foundations program. If simplifying family is something that has long felt aspirational, this program might be for you. This is a comprehensive step-by-step implementation program that gives you an aid is the approach to simplify your family. In the first half of the program, we're going to start in the home with the physical stuff. And in the second half of the program, we're going to move to the mental clutter and simplifying parenting. I've had a couple of recent participants of the program reach out to me during this time of isolation and say how much the program helped them and how much it's continued to help them.

During this time of uncertainty. Last week, I got a message from Lucy who is a recent participant of the program, and she said, Hi, Denaye. Over the course of the last year, I've taken most of your online courses. That masterclass was the most life-changing for me. I've read your book and become an avid podcast listener. I was looking at our calendar last night, crossing off what felt like dozens of engagements because of the coronavirus. And all I could think was talk about white space. Thank you for helping me view that white space in a positive way. So if you've been on a journey to simplicity and you'd like to partner like a helping hand, I would love to have you in this program. Enrollment opens on Thursday, March 26th, and I'll be offering an early bird discount for the first few days until the program actually launches on April 1st. So go to simplefamilies.com/foundations to get more information. And I hope to see you there. Thanks again for tuning into today's episode. And I hope you enjoy my chat with Hillary. Go to the show notes. That's simplefamilies.comepisode207, to get the links to get in touch with Hillary and to learn more about her without further ado here's today's episode.

Denaye Barahona: Hi Hillary. Thanks so much for chatting with me today.

Hillary: Thank you so much for inviting me.

Denaye Barahona: I'm so excited to hear your story. I have been reading your blog and following your family for, I don't know, probably four or five years now.

Hillary: So crazy. It's been a long time.

Denaye Barahona: Right? It has. So I asked you to come on the podcast today because I feel like many of us don't know firsthand, a family who has a child who is immunosuppressed, and you do so I want to hear a little bit about your story and what it's been like for you the past weeks, dealing with coronavirus and the fear around that is this, does this feel new to you being fearful of germs or has this been an ongoing fear that your all your family has?

Hillary: So it's funny that you asked that we, um, so our oldest Beatrice had a liver transplant and I can go through all of that. But to, to your most recent question, after her liver transplant, like most transplant recipients, they have to be on lockdown post-surgery because their immune systems are so compromised that any little sniffle sneeze can get to them and really harm them. So after her liver transplant in 2015, we were advised a 355 day lock down afterwards. Right. I know which now right now, for two, three weeks seems like nothing, but it was, it was challenging, but definitely we had a lot of protocols that I think trained-up for things like this, where people had to take their shoes off at the door. We only limited her exposure to our immediate family. So, it's just my husband and I at the time, his parents, my parents, and anybody that wanted to come visit, just watched her through a window. I mean, we kind of felt like a zoo exhibit, but this is not abnormal for us, since her transplant.

Denaye Barahona: Yeah. Can you start us at the beginning? Tell me she's your oldest. B's your oldest and how old is she now?

Hillary: So Beatrice just turned five at the end of December.

Denaye Barahona: Ok, and she goes by beatrice and not B

Hillary: I call her both. You know I call, I kind of switched between the two, but, um, yeah, it doesn't matter. She answers to both.

Denaye Barahona: Okay, great. So tell me about your journey into motherhood and what those first few months were like for you and how you found out about the challenges with her liver?

Hillary: Sure. So my husband and I were married in 2012 and then decided that we wanted to have a baby and pregnant pretty easily and then she was born on December 28th of 2014. And delivery was normal. I had a C-section because of a previous surgery. And when she was born, she looked a little jaundice, but nothing that caused in the alarm, nothing that, you know, you hear a lot of these kids that go under the lights at the hospital before they go home and things like that. She didn't have to do any of that, but we did notice that she was a little orange, but being first-time parents, you know, we just relied heavily on what our doctors recommended and we brought her home. And as all parents know you're at the hospital or at the doctor, rather, it feels like very often, every three days she was getting checked every week she was getting checked and week after week, it was just, she looks a little jaundice.

Hillary: Let's keep an eye on her. She looks a little jaundice. Let's keep an eye on her. And the whole time I just had a pit in my stomach of this just doesn't seem right. You know, something else feels like it's it's going on here. And when she was in, otherwise she was acting really normal. She was very sleepy, which I thought was just a normal baby thing. And when we went in for her eight week checkup, the doctor said, the pediatrician said, she looks fine, just a little jaundice. Once you bring her back in a few days again, and as we were leaving, I had this like switch in my brain of just that mom instinct, where I turned back around. And I said, you know, the whites of her eyes are looking a little yellow to me. Can you take a closer look? And she did. And she said, okay, I agree with you. Let's send her for some lab work. Let's send her to see kind of what her numbers are saying. And from there, I took her at eight weeks old to go get a heel prick, which at the time I thought was the most traumatic thing that anybody could do getting a drop of blood from a baby's heel.

Denaye Barahona: They are pretty traumatic. I have to say.

Hillary: I know. I mean, could you imagine I just, I was undone over it and called my husband and just tears and all that and got home that night and we put her to bed and we had a glass of wine and we were just like, huh, okay, that's over. I'm sure. I'll think they're fine. And then at 9:00 PM, our phone rang and we were told we get the results in the next couple of days. So we weren't definitely, we're not expecting the pediatrician. And it was a pediatrician. And she said, listen, I just got off the phone with a liver specialist at Cincinnati children's hospital. And B's numbers don't look right. You're going to have to go to the hospital immediately with her. And from there, we just packed up our stuff, thinking we'd be there maybe one night and took off for the hospital.

Denaye Barahona: Wow. Crazy. My goodness. So you, it was basically late in the night when you got there and what did they do when you arrived?

Hillary: Oh my gosh. It was, I think we got there about nine 45. By the time we figured out what to bring with us. And we were met by a liver specialist there, Dr. Cooley and Dr. Cooley left his house in the middle of his night with his family to meet us, you know, 28 year old first-time parents to look us in the eyes and basically say, we think your daughter has a life-threatening liver disease. And that moment will forever stick in my brain as something that just was the moment that this is not how this is supposed to go. This is not how, you know, a first-time mom is supposed to be. This is, I want to do what all of my friends are doing with their babies and taking them on walks and being outside. And this is, I know this is the start of something very challenging.

Hillary: And after that thought from him, we, she went through three days worth of major extensive testing lab draws. She had a PICC line put in, which is like an Ivy for a baby basically. And they concluded that she was going to need a surgery to open her up and really figure out what was going on inside. And if it was something called biliary atresia, then they were going to try to rework her duct work to help the bile drain because kids that are jaundice, at least in these situation, the jaundice is because her liver isn't working proper release or bodies filling up with bile. It's filling up with poison and that will kill the organs. If that bile does not drain. So the kasai is an eight hour surgery. They did when she was nine weeks old to try to drain that bile and get her to start, um, getting rid of that poison. And she did that eight hour surgery at nine weeks old, where, you know, they prepared us. She may make it through. We hope she does, but she's so little. You just never know if they've underlying other health issues. And

Denaye Barahona: How many days of this was this after you got the call from the liver specialist.

Hillary: So we got the call on Monday and her surgery was on Friday and we were in the hospital for those five days. And they said, when we do the kasai surgery, this is how it's going to work. If it works, if we rework her duct work in the bile search drain, it will 30% of patients that'll work till they're in kindergarten. And then they're going to need a liver transplant, 30%. It's going to work till they're seniors in high school. And then she's going to need a liver transplant and 30% of patients that work till they're in college. And then she's going to need a liver transplant and 10%, it will work forever. So we were really holding on to that small percentage that this was something that was going to be a fixed. And we were going to be in the hospital and we were going to go home. And that's just not how it went, unfortunately.

Denaye Barahona: So what happened after the surgery? Did they think it was successful?

Hillary: So initially they did. We were in the hospital for two weeks and then they sent her home, sent us home and looking back, you know, you always in the moment, you're just so hopeful that you just are blocking out anything that could seem negative and looking back and having conversations with some of the healthcare workers from the doctors and nurses, they knew they knew it wasn't working. And I was just so hopeful. Jordan was just so hopeful that it was that we were like, it'll be fine. She's going to go home. It'll kickstart everything. We'll find her stool was still white. So to us, we knew that the bile wasn't draining properly. And two weeks after, I mean, this was like one of those crazy mom moments. I felt like through this whole thing I had was Jordan changed the contact information at the hospital to be him.

Hillary: So if they ever had to call to say, we need this, or you need to come back that he was going to be the call because I was just not in the right state of mind, to be the first person to receive that news. And I'll never forget it was after her concise surgery. I think it was like a week and a half, two weeks later I was in her nursery was rocking her back and forth about to put her down for an app. And Jordan calls me and he says, I just got off the phone with our doctors at children's and we need to start packing up to go back. And I was like, well, what do you mean? And he said, it's not working. They just looked at a recent numbers and we're going to have to go back to the hospital for the foreseeable future.

Hillary: So I'm on my way home and you need to pack your stuff. And I went into this almost like a little mental, like breakdown in that moment because I didn't do anything other than just hold her. And Jordan walked into the room and he was like, we gotta go. They need her there. We got to go. And I just refused. I just said, she's not going because I think I knew what that meant was we're going back. She's going to need a liver transplant. And I just fought him on it. And I just was like, no. And he said, you know, you have to give her to me. And I sat in the chair and said, no, I'm not giving her to anybody. She's staying here. She's staying home. It's going to be fine. It's going to be fine. And we had this 10 minute back and forth of him, basically like making me come to my senses of you have to let her go. We have to go do this. So we packed up her stuff and, went back to the hospital and we were there for weeks figuring out what the next steps were going to be.

Denaye Barahona: Were you In maternity leave from your job?

Hillary: So I was supposed to be going back the moment that she was readmitted was the moment I was supposed to start back at my job. I was a digital and social media consultant for a local agency. And at that time I had been there for gosh, six years maybe. And I think I took an extra week and while she was in the hospital, I went back to work and I, we are fortunate, very fortunate. Jordan are both from here. So both sets for parents were here in our moms, alternated, sitting with her during the day while we went back, Jordan would spend the night with her every night in the hospital. He'd get up, he'd shower at the hospital, get his suit and go to work. I would come in the morning, wait for one of our moms. It was just like a back and forth thing for weeks. And what was decided within those two weeks was that she in fact, was going to have to go on the waiting list and wait until a liver became available. As we watched her become sicker.

Denaye Barahona: And what is that process like getting a transplant for a baby because is helped me understand better the transplant process to someone have to die in order for someone else to get an organ. And how, what are the logistics of it?

Hillary: Yeah. So I always thought that transplant meant death sentence. That is, I mean, I was ignorant and I self-admittedly was ignorant about that. If I heard somebody at a liver transplant or any transplant at all, I'm like, Oh gosh, they, that's not going to be good for them longterm, you know, all those things. And in fact, things are just so different. It a lot different things than what I imagined. So when it's decided that you need an organ, you go on a waiting list and you are given points that are based on your current health situation. Um, are you growing, are you not growing? Are you gaining weight? Are you not gaining weight? Um, all of these things factor into your score. And if the more points you have, the higher score, you have the higher up on the list that you go. So that people, that kids that need organs faster than others are prioritized. If that makes sense.

Denaye Barahona: Now, does a child need to have an organ from a same size child? Is there much flexibility there?

Hillary: So, there is flexibility there. You could receive an organ from an adult. I believe they just, they would take partial of that Oregon. They just have to, they have to be a good match, whether it's, you know, um, blood type or size or whatever it may be, they, they have to match you based on your makeup and the donor, the deceased donors make up. And because there aren't enough organ donors, um, there are kids that die on this waiting list. So you, as a parent are given this weird in-between where you want, you do not want your child to become sicker, but at the same time for them to get an organ, they have to become sicker. So you're in this weird, like you want these points, but you don't want them to stop growing. So it's, it's a very interesting and really heartbreaking place to be.

Hillary: And when Jordan and I were given a pager and we were told, if this pager goes off, you have to leave whatever you're doing and get your baby to the hospital. Cause at this point they discharged her home and said, this is what you need to do. You need a fat in her up. These are the things that she needs to be eating because kids that are big do better. Post-transplant um, and at this point she's still just months old and we did everything we could just to try to keep her healthy, but she did stop growing in length, she did stop gaining weight. She was on a feeding tube that we, if she pulled it out, which was very often because she was so little, we had to put it back in ourselves and then listen with a stethoscope against her chest to hear a pop, to make sure that it didn't go into her lungs versus her stomach.

Hillary: I mean, it was insane. It was the whole thing was crazy. And during all of this Jordan and I thought about living donation, you know, kidneys as adults, you can have two kidneys, you only need one. You can donate one to an adult. What can you do for kids in this type of situation? And in other couple other countries, living donation is an option for, pediatric liver patients. So we did some research and we brought the idea to her doctors who obviously were already aware, but it's definitely not something they lead with at this point. It's 2015. And the last time they'd done something like this was in 2012, when it was in a very, very dire situation.

Denaye Barahona: How long she been on the waiting list at this point?

Hillary: Um, not that long, to be honest with you. We, she was on for, let me think about this. She was diagnosed in March, April. I mean, she was on the waiting list, I would say like four weeks or so. Okay. And we were just determined to find another solution. And we brought it to the doctors at first, they said, no, the system works. The process works. You need to let the system work. It doesn't make sense to put somebody who's healthy in harm's way. And our response was somebody is willing to give a piece of their organ to be a trip. It frees up that organ. She would have received otherwise to another patient. That's waiting on your list. And we went back and forth about this. And just to back up the liver, your liver regenerates. So you, as an adult can take off part of your liver, donate it to a child and your own liver will regenerate within six weeks.

Denaye Barahona: Wow. Organs like that, or just the liver?

Hillary: Just the liver. Liver's a good organ to need. Apparently we got lucky in that department and that small piece of your liver then implanted into a child will grow as they grow. So, um, it's it to us. It was a no brainer. Just let us get tested. They said, well, the likelihood that someone's a match is really low, whatever. So we finally convinced them and a mom is a better donor till the child turns three. So I started the testing and it was eight weeks worth of testing. It was not just blood work. Although there were pints of blood taken out of my body. It was every scan you can imagine. I mean, they're looking not just at your genetic makeup, they're looking at your physical makeup. Like what your insides look like? Is this feasible?

Hillary: Are you healthy? I mean, the whole, it was just, it was crazy. And after eight weeks we found that I was actually a perfect match for B. So the hospital, it was, it is one of the best moments of my entire life. I mean, knowing that you can do something to save your child and give them another chance at health. Is there anything better? I mean, would there be anything better if anybody listening to this podcast, you're listening to think, Oh my gosh, thank God this wasn't me. But what if it were, what didn't you just feel so fulfilled that you could do something about it and yeah.

Denaye Barahona: Anything inside of you that you could literally give to your child to save them?

Hillary: My liver I'd give it to her, but you know, it's traumatizing and really scary for everybody else. I was doing something right. I felt like I could do something and I could save her from this. Meanwhile, my husband is so concerned. My parents were like, I don't know if this is something you should be doing. I mean, I had to go through very intense psychological evaluations to make sure that I was making the right decision. And yeah, we scheduled the surgery date, um, for July 7th of 2015.

Denaye Barahona: So how long after you found out you were a match? How long did it take? To actually have the surgery?

Hillary: So it, um, I thought like, okay, I'm a match. Can we do this tomorrow? A little more, took a little more coordinating. I mean, they needed two ORs right next to each other, two sets of everything too, because my surgery was at children's. They literally had to buy side-by-side operator. And so the scheduling of getting four of the top liver surgeons in the country all together and all available, I think was one of the challenging parts. But I think I found out end of may. And I think we scheduled, um, shortly thereafter for July 7th.

Denaye Barahona: What was going on with her in the meantime, was she growing with the feeding tube?

Hillary: Oh my gosh, no. She stopped growing in length. She stopped gaining weight. She, it was a hot mess. She was on a million medications, you know, vomiting all the time. It was just, everything was just a mess at our house. We were just, and we had to keep a really healthy, right. Because we wanted her to go in very healthy. So we limited her interaction with people and places and all of those things. So it was like a pre lockdown before I knew really what a lockdown was like.

Denaye Barahona: Yeah, and where you working?

Hillary: So my company, which was so, so kind, they, they released me from the minute I found out I was a match may and then I went back in November. So they were so kind as to realize that this was a really life and death situation. And I was going to be basically no help to them probably if I was at my desk. Right. Like my mind was elsewhere. So I took off that time just to be home with her and really soak in every minute, because I didn't know if the next one was guaranteed.

Denaye Barahona: Yeah. So bring us to the day of the surgery. What was that like for everyone?

Hillary: Oh my gosh. So Jordan had sent the night with her in the hospital the night before I slept at home. And it was just, it was so emotional. I mean, I had a long letter that he had written me and I just spent time just, you know, by myself, just thinking about what the day and praying. And, um, we will, I woke up the next day and they were going to take me back really early. They to get me prepped, I was going under anesthesia first to get everything prepped and ready to go before she went under anesthesia. So the one person that we wanted was her while Jordan was with me, was my dad. So my dad met us at the hospital and that was Beatrice while Jordan and I went back and it was emotional. I mean, I, I always joke. I had the easy job though, because I was asleep for the whole thing, but everybody was like a mess, apparently.

Hillary: I mean, you know, Jordan has a brother who lives in Denver. He flew in town for him just to be there for him. And he was there so early and it was just, it was, I tried to keep it lighthearted, but it was tense and it was emotional. And I was worried about B. I was worried about B whether or not I was the donor. She was my main, main concern. So they wheeled me back at 7:30 AM on seven seven. And the surgery lasted, I 10 to 12 hours, side-by-side operating rooms. I have an incision from my belly button, um, all the way up between my breast. So they had my ribs open and just to really get in there and get everything they needed. And, um, it was, I woke up in the children's Cincinnati children's hospital ICU. And all I remember is my first question was, how is B?

Hillary: And they said, she's doing well. And then I just like was knocked right back out again. I just, but for Jordan, I mean, I, I prepared a little bit. I wrote him a note. I knew how long the surgery was going to be. And I wrote him a card for every hour that we were under anesthesia and the, they were getting hourly updates from the nurses. So the nurse would come out every hour and they were in a private waiting room. It was my parents, his parents, my sisters, his brother, and him himself. And she would deliver a card every hour and it's a long day, the weight, you know, to figure it all out. But it was good. Everybody made it out of surgery and it was really the weeks after that became, you know, the, really the unknown, you know, they they're confident about the surgery.

Hillary: It's more just how she fares afterwards, if that makes sense.

Denaye Barahona: So how long were you both?

Hillary: So I was told I was going to be in for like two, three weeks and she was going to be in for a little over a month and I was actually out and under a week and she was out in under two weeks and it was awesome. And kind of the first thing I think the doctors looked at when saying, my gosh, should we be doing maternal living donor, donor transplants more often, you know, we were able to quote unquote to transplant Beatrice at the peak of her health, rather than waiting for her to get so sick. And she has her mom's liver in her. Is she recovering better at this point because of those two things and you know, over the last five years, it's proven to be true.

Hillary: She, when I was discharged, I went home, but I was still in so much pain. And I was going back to the hospital twice a day. I was Ubering and Jordan was at the hospital. Our moms were at the hospital or he was at work. And then when she was discharged home to us, we had a whole home health care nurse come over and set up her nursery, like a hospital room because she was coming home with a central line. So in order for them to draw blood, to check her numbers two, three times a week. So we brought her home and it was just like, Oh my gosh, first of all, I don't feel old enough to even have a baby or responsible enough. Second would be like, what do you mean I'm responsible for this child who needs extra attention?

Denaye Barahona: Is she six or seven months old now this point?

Hillary: Yes. So, she was transplanted at six months and yeah, we were home by like when she was six and a half months.

Denaye Barahona: So she's still tiny,

Hillary: Still tiny. I mean, I look at my other two now. I'm like, Oh my gosh, people are like, I don't know how you did that. I don't know how you survive that I don't. And it's just thank goodness she was our first one. Cause we didn't know any difference. It was just, this is what you do. This is what happens, you know? But now looking back at these other babies that we've had at six months, I'm like, I don't know how this happened at this young age.

Denaye Barahona: So in the weeks that followed, you were on lockdown at home, she was basically in sort of a modified hospital room with you all.

Hillary: Yes. So I mean, I, the risk of sounding crazy, I felt like if she could survive this.

Denaye Barahona: Could you allowed to sound crazy, Okay good, you fought the reason to sound crazy. Free bath. I get a free bath. Okay. Absolutely

Hillary: I feel like if she survived this liver transplant, she did not need me watching over her every five seconds. I did not feel like it was healthy for anyone. We let her sleep in her nursery. She slept in her nursery. We had cameras on her, but I honestly didn't check them that often. I just like when she was sleeping, you know, I just, I, everyone needed just to kind of, our whole thing was like, we need to get back on track to our normal life. Like this is not going to be what defines us. This is not going to be what holds us back. This is not going to be what consumes us. And we kind of lived our life that way. I mean, I was home with her. We, the home health care nurse pup over twice a week. A very lucky thing that happened is our, one of our liver transplant doctors, which was the lead on her surgery, lived five houses down from us at the time, which you can't even make that up.

Hillary: I didn't even know this woman.

Denaye Barahona:That's amazing.

Hillary: She walked in. It was the best. I mean, she drove by her house. I would hold, be out the window and be like, does she look okay, moved Hillary, if you don't stop harassing her. But you know, we just kept her in, locked down. And it was a great time for our family of just focusing on what's important, you know, it's six months old, a house, a house. It seems like the whole entire world to them. They're so little, you know, if I had to do it now for that long, I think I definitely would go crazy, but it was good. I mean, we just, we really focused on making sure that she was strong and healthy. We had physical therapists come over from the hospital to help her start crawling. She didn't crawl until she was one. And yeah, we just really worked hard that first year after her transplant.

Denaye Barahona: So at that point, when is she sort of in the clear, as far as the transplant is taking?

Hillary: It's a tricky question because you're never really, in the clear, I would say the biggest milestones after transplant are the three months and the one year. If depending on how she does three months post-transplant is, um, indicative of how she will fare longterm typically. So we did everything we could to make sure she didn't catch anything or that nothing was compromising.

Hillary: She was on a very, very high dosage of immunosuppressants and she was on 15 other medications, some of what she took three times a day that we had to administer and we had to crush pills and put them in bottle. I mean, it was just, I felt like bill Nye, the science guy, it was just insane. And, but she hit that three month milestone without being readmitted. And then over the next few months to get to the, to the one-year post-transplant, she's admitted once they did, her liver numbers were kind of weird and it ended up just being that she had like a common kid virus, which was awesome and she was fine. So I would say the biggest milestone for us was that one year post-transplant you make it to one year, then, you know, you, you have a very high likelihood of having, a few normal years after.

Denaye Barahona: Okay. So for anyone that doesn't understand why a kidney transplant or a liver transplant patient needs immunosuppressants, can you explain just on a layman's level, what that means and why they give that medicine?

Hillary: Yes. So you and I have organs that were made for us. They were built for us. Our body accepts them. When you put a foreign object into another child's body or another person's body, like a liver, that's not theirs their body. If they sense that organ will automatically try to attack it and get rid of it, get it out of its body. And so to prevent that, and what that's called is rejection to prevent that rejection, the body rejecting that organ, you are given medication to suppress your immune system. So your immune system kind of is like in Lala land. Like everybody gets along, everybody's happy, all your organs, all yourselves. Everybody's good. And if you didn't have that immunosuppressive, then your organs and your body can wake up a little bit and they can figure out, okay, there's something weird going on here. Let's fight the weird thing.

Hillary: Let's fight the foreign object. So there's different levels of immunosuppressants. You can be on right after transplant. You're on a very, very, very high dosage because it's right away at something brand new into the body. And you can eventually taper off that medication until you're on a pretty low dosage. Is your body gets used to that object now because B was only six months when transplanted at now, she has her foreign liver quote unquote way longer than she's had that original one. So the hope is the older she gets, the more comfortable comfortable her body will be with that organ.

Denaye Barahona: So she had a good three month Mark and a good one year Mark. And have you had any big setbacks with it since then?

Hillary: Knock on wood. We have not, we are monitored still closely. She does blood draws. She was doing blood draws twice a week, three times a week. Then it was like once a week, then it was once every other week. And now we're down to like once every two months, which is just insane. And she, the five-year-old will just hop right up there, stick her arm out. They stick her, they get her blood out and she is happy as a clam. It's the craziest thing, because if she fought that or had a really hard time, it'd be hard on everybody. We've had little things here and there, you know, like numbers spike or she's caught something that we're nervous about. Um, you know, there's always, we always treat her with what, what's the freight like look loved hands or, you know, like we just, we're always careful about her.

Hillary: You know, like there are certain things as a transplant patient she's not allowed to do so we're working through things like that. Like she's not allowed to swim in public pools like rivers, ponds ever when you're on immunosuppressants. So we're, we're working on coming up with a compromise. The great thing is, is that since St. Children's doctors are centered, their philosophy is family centered care. So to us not going to a swimming pool in the summer is just not, not going to happen. I mean, so how do we figure out the safest way to do that for her? But other than that, she's been really good knock on wood. She's been very healthy.

Denaye Barahona: That's awesome. That's truly amazing, the whole story.

Hillary: It's a Miracle.

Denaye Barahona: It is.

Hillary: And to top it all off, it's, you know, she was on such a high dosage of immunosuppressants right now she's on a minimal amount. So, and that change that can change. Like she can get, for instance, she can get a really bad cold, or she can get the flu and it can wake up her immune system enough to be like, Oh my gosh, there's a foreign object in here. So then we have to raise her immunosuppressants. But over the last, I would say six months to a year, she's been on a minimal amount. So she's been able to fight off most things that she's caught on her own.

Denaye Barahona: That's great. So talk to me about vaccinations. I know that immunosuppressed kids are kids who are at risk for vaccinations. What does that look like for a kid like Beatrice?

Hillary: So something that we didn't know either when she was transplanted, is that when you have a transplant, you're typically are not able to be vaccinated for live vaccines, like the chicken pox or MMR, which is measles, mumps, and rubella. And when we found that out, we were devastated because we, although we live in a community and some of our own families and friends that believe in vaccinating their children, if they can, we, are, we still, that's a big worry of ours. You know, if she can't get chickenpox vaccination, and she gets the chicken pox, it can be fatal to her. And same with MMR. So the vaccinations for us are really important. Um, not only in our family, but other people should take it very seriously. I mean, there are people that cannot get vaccinated that would otherwise. And if you don't get vaccinated, you're not helping yourself or anybody in your community for that matter.

Hillary: So that was a big thing that we tackled with the hospital recently, where we spoke with infectious disease and said, we want to vaccinate her. And they said, well, she's a transplant patient. We don't vaccinate transplant patients for live vaccinations. And we said, well with everything going on with the measles. And there was somebody at her summer camp last year, maybe that was two years ago that had the chicken pox, like we can't live like this. We need to get this figured out. And you know, the doctor that we worked with, Dr. Danzinger and infectious disease at St. children's instead of just saying, this is the way we do it, this is what we've always done. She figured out a way to maybe change the policy and do something better. And over the last six months, because it was a lot of trial, they gave a little bit of a vaccination, then they would see it if she showed any symptoms and then they would test her blood work and then see what, you know, it was just this whole long process that as of about a month ago, she is fully vaccinated and which is a very, very, um, that's a, that's so rare for somebody in her situation.

Hillary: And we are really proud of the hospital for helping figure that out, but it still doesn't stop how important it is for everybody else to be vaccinated as well to keep again those who can't be healthy.

Denaye Barahona: Absolutely. So, the part of your story that really stands out to me is that you have really been an advocate for standing up for what you need with the medical system, and you've brought your own ideas and your own beliefs and instincts into all of this. And what sort of words of advice do you have for parents on following their instincts and really pushing when they need to push a little bit?

Hillary: I would say the biggest thing that I've learned throughout this five-year plus journey is speak up, speak up. I mean, you are dealing with people, doctors, nurses that are very intimidating, right. They know more than I could ever dream to know about these condition and what she's going through, but that should not stop me from questioning, um, collaborating and working with them. I mean, we're so fortunate St. children's hospital, they do a great job of having doctors that help humanize themselves. They bring things down to our level and we can have real challenging conversations and they welcome a challenge, but that's not always the case in every situation. And so I would say, pick your team, find partners that are open to working and collaborating with you and ask questions, do not be afraid to ask quote unquote, a stupid question and challenge these doctors to not just think about what has been done, but maybe think about things that they can do to change it and make things better.

Hillary: And they will respect you that way. I think a lot of these doctors that we've worked with, we've not a lot a few. We started out on Rocky roads, um, by challenging them. And, and we were just always raised and taught somebody in a figurehead role like that. You do not want to disrespect by challenging them. You don't want to demean them teachers, doctors, but when it becomes an issue of your child's health, you have to, that is your obligation. They cannot stand up for themselves. It's your job to do that and feel like you've exhausted all efforts. So that's my biggest piece of advice. And that's something that I have learned majorly over the last five years is speak up, ask questions and challenge your team.

Hillary: Now you have worked closely with the hospital since all of this, right. Has that been therapeutic for you to continue to be involved in the transplant program there? Yes. I would say my involvement at the hospital is what fuels me. When you have a child who should not be alive and is only alive because of somebody else's level of care of them, an interest and investment in your child, you will never be able to repay what they've given you. And I feel like that at the hospital, I feel like I don't care if you were drawing her blood or you were cleaning the room or you were performing her transplant.

Hillary: Everybody had a hand in keeping her healthy and I'll never be able to repay that. So the more that I can do for the hospital, the more that I can do to raise awareness for things at the hospital, the better I feel, they worked so hard for me. I just, I want to work so hard for them and it's hard to find different things to do, but, you know, we volunteer a lot there. We help raise money for the hospital, and we advocate for them and yeah, it's just, it's, it's something that will always drive me. It's so therapeutic. It makes me feel like I'm repaying a sliver of what has been given to me.

Denaye Barahona: Have you been able to work and help to mentor other families who are going through similar situations?

Hillary: So, I put a lot of our journey on, I originally had, as you know, I originally had a blog that was like chronically in this, you know, clothes and fashion. And then I became a mom. So it was all mom's stuff. And then it became a way, a great, easy way because people couldn't come see B it became a great, easy way for me to keep everybody up to date as to what was going on with her. So I use this blog as a communication and over this time, over the last five years, and same with Instagram and Facebook, I've used it as a way to still share the journey of what's going on with B and because of that, I've been contacted by families from all over the world whose children are diagnosed with biliary atresia and who are facing a transplant are facing that initial kasai surgery that want advice.

Hillary: Some of which are families that are local, some of which are international families. And I, the one thing that somebody said to me once when we were in our darkest hour with everything would be before her transplant was our doctor Dr. Kathleen Campbell. And she said to me, it'll be okay. Like she was just reassuring me. I was having a really hard time. And finally, I just snapped. And I said, I don't know why you can be so positive all the time. I don't know why you can be so confident in this. This is like life or death and all that. And she just calmly said back to me, I can be so positive because I know what the other side looks like. And I feel like now being on the other side, I know what this side looks like. And it is healthy and it is happy and it is normal. And I want to make sure that families that are in their darkest hours know what they have ahead of them.

Denaye Barahona: Did you have any contact with any other families during that time yourself?

Hillary: I had contact with one other woman and her name is Jessica Klein. And she, when I, I said that these transplant was in 2015 and the one time that they had done it previously, or the most recent time they had done it was in 2012. When this little baby was in a dire circumstance and there weren't any available organs. And so at the nine, 11 hour, they said, mom, let's get you tested. Let's get you figured out.

Hillary: And mom was her donor and I was put in contact with her and she was it, God sent me, I called her so much. I, she came and visited us at the hospital and her daughter, I especially loved chatting with her because her daughter now, gosh, is probably seven or eight. And she is she's. She's like how I want be to be just in two years, it has three years ahead of us. You know, it's like, she's healthy, she's playing sports. She does great in school. She has siblings. Like I always looked at her as she's the path that I want to take. And that's been really rarely helpful for me.

Denaye Barahona:Oh, I'm so glad that you had that. And I think that's so powerful connecting with other families who have been through similar circumstances.

Hillary: Oh, absolutely.

Denaye Barahona: So tell me about the impact that this has had on your marriage and your, the growth of your family. Was it hard to decide to have more kids?

Hillary: It wasn't. I thought it would be, but it wasn't. We said, so first of all, I can see how having a chronically ill child can change a marriage. You know, like you are in a high stress situation when all this was going on, we were in such a high stress situation that if you aren't always on the same page, you can see how things would crumble. We are so fortunate that although we weren't always on the same page, but we worked through it and we figured it out. And when Jordan was having a bad day, I stepped up for him. When I was having a bad day, he stepped up for me and it was, I've just, you know, I'm one of three girls and it was very hard. I was the first one to get married. And it was very hard for my dad.

Hillary: And to let one of us go, and I have this email that I saved, that he wrote me during all this craziness that just said, I always knew Jordan was a good guy, but I never knew how good and it's the truth. I mean, we, I'm just so fortunate and it's really made us stronger than ever and figuring out whether or not to have more kids. I was, we both were on the train of like, this cannot define us. This is not the end of our family. This is not going to be the end all be all. We are not a one. We never just wanted one child. We wanted three and that's what we were going to do. And I'm sure my parents behind closed doors had heart attacks when we told them that we were pregnant with poppy because we were pregnant with poppy.

Hillary: So be a Hunter transplant at six months. I mean, we were printed probably six months later. I mean, it was just, I don't, I mean, looking back, I think, thank goodness we just were in this mindset of like, let's just continue on. Let's just continue on. But this happened to one of my children. I'd be like, you are craziness, but it's been, it's been very good for us. It's been very good. It's these had more attention as a baby, as any, any child more than any child should ever have. And this really helped normalize our family that, you know, this is just, it was just a part, this is a part of the overall family, a part of the overall story, but it's not what defines us

Denaye Barahona: Kind of go in two different directions with this. You can either be super on top of her and hovering all the time, or you can have the mindset where you're like, well, you know, what, if we made it through that, we can make it through anything. Do you feel like you've gone in One way or the other?

Hillary: Yeah, I kind of am in the mindset of we've gotten through that. We can get through everything. I think it also comes from the confidence I have in our healthcare team of if I was wishy-washy or unsure about our providers, I would be a lot crazier, but I am so confident of the team that we've established at the Hospital St. Children's that I'm so confident that if something pops in our way, that we, as a group, we'll help figure it out for her. And it's really eased all of our minds exponentially.

Denaye Barahona: So, tell me, bring us up to today. Like, are, are you on lockdown or self quarantine right now? And what does that look like for you?

Hillary: So, We were instructed by our doctors, because again, B is immunocompromised. She has, she has challenges that way. So, we are limiting our space to our house and each other, and just my mom and Jordan's parents who we also know our self quarantining. So, we know where they've been, you know, and we're just really competent that they are keeping their circle very, very tight and we are too, and that's allowed us to do that. So we're just staying busy over here you know, so B's five, we have, Poppy's three we've Louise. Who's turned one today and we are just getting as creative as possible. We're going to, you know, anybody that's listening, this has kids right now. They're just doodling and making all of this artwork and like, what do you even do with it? I have an idea.

Denaye Barahona: Straigh to the garbage, the recycling,

Hillary: I know, right? Well, that's normally what happens, I decided that Monday in Cincinnati is supposed to be nice. And we are going to host an outdoor art show and have the girls, but their artwork around the outside. And my mom and Jordan's parents will come over outside, have popcorn, we'll make ribbons and they can award some pieces, some ribbons and just, you know, make it like a day of an art show outside. It's just, we've got to get creative, but we have a lot of tricks. We have a lot of tricks up our sleeve. This isn't the first time we've had to do it, but it's so important to stay home and self quarantined. So that's what we're doing.

Denaye Barahona: Good. Well, I'm going to put your blog link and your Instagram link in the show notes here. So if anyone's looking for some new ideas on getting creative, you can, they can pop over and see your stories and what you guys are up to. I love the art show idea, so make sure to post pictures of that. We'd love to see that.

Hillary: Okay. will do.

Denaye Barahona: Cool. Well, thank you so much, Hillary. This has been so great. Thank you for taking the time to chat with me today. I know it's probably, kind of a hectic day having everybody at home, so I'm glad you were here.

Hillary: Yeah, this was a much needed break. I might just stay up here for a little while longer and act like this interview took two hours, but thank you seriously. It's so nice to help spread the word about how important all of this stuff is. So I really appreciate it.

Denaye Barahona: Thank you. I hope you've enjoyed this conversation today. If you have questions or comments, you can leave those in the show notes at simplefamilies.com/episode207. And if you're interested in joining or learning more about the Foundations Program, I would love to have you there go to simplefamilies.com/foundations. Thanks for tuning in.

Denaye Barahona

Denaye Barahona is a loving wife and mama of two. She's a therapist for moms, an author, and the host of the top-ranked Simple Families Podcast. Denaye holds a Ph.D. in Child Development and is a Licensed Clinical Social Worker. She has been featured on the likes of The Today Show, Netflix, The Wall Street Journal, Real Simple, Forbes, and numerous other media outlets.