Heaven is Better | Lauren Johnson

Welcome to the Miracles in Grace podcast. I'm your host, Grace Marinette Cackett. And today we have a really special guest here that a lot of people will recognize, Lauren Johnson.

Hi.

Thank you for being here.

Oh, you're. I'm so honored. Thank you.

I'm so honored to have you. I feel like. I feel like we should give some background on how we knew each other. I feel like I knew of you because Lauren and I both grew up in Nashville at two different small private schools in Nashville, and we actually got connected. I was thinking about this last night. It's so funny how we got connected and what our friendship has been like since, because my Davey and I were at a charity event for a charity that we're both. That we both love and support in Uganda. Not love one another one, but she had donated, which all of this will make sense if you don't know her, but she had donated this baby care package basically to the silent auction. And at the time we were pregnant with crew. And so we bid on it and we won it. And it came with all this awesome stuff. I was literally using the towel, like the seal seedlings towel that was in it last night and thinking about you. But I love that it came with all sorts of stuff. But one of the things that came. That it came with was a baby 101 class and a night of night nursing, which if you don't know about night nursing, it is. I don't know if it's a thing everywhere, but it's a thing.

In Nashville, it's definitely becoming a thing. And really some cultures, it's more common. Really. Yes. Like it has been around for centuries. It's more grandparents stay the night. And now with us kind of getting away from living with family. Like if you think about in the old days, families just continue to live together. And other. Other cultures, like overseas and in Europe, it's really common. Yeah. Everybody kind of lives really close and on top of each other and so they all take care of each other. And so with now people live more spread out and live more. Kind of depends on your mental health and your family dynamic. But some people have healthy. Different boundaries. I shouldn't say healthy, but just different boundaries around their personal and home life. And so now people hire professional help a lot.

Yeah.

So it's becoming more and more popular and we are so excited. And Nashville's booming and. Yeah.

And it's the biggest gift. Like I'm such a big advocate for it, especially for first time moms, number one. Basically, if you haven't heard of night nursing. There are nurses that work for her company, Choose Joy nursing, which we were laughing. We both walked in with our Choose Joyce Stanley tumblers or whatever, and we're like, shameless plug. And then Davey put this little sticker on mine. But we basically, you have nurses that will stay at your house overnight and give you a night of reprieve because in the newborn phase, you're just not getting any sleep. And it's also awesome. Awesome. When you have babies, it's such a gift to have someone come in and help you have a night or a breathe. You can do it if you're breastfeeding. You can do it if you're bottle feeding. And the way that y' all do it is just so stellar. They come in and you're like, I would trust these people with my life. But what I was going to say is that part is a gift, but something else that is such a gift of night nursing that I feel like people don't talk about as much as they do just getting sleep is. I feel like my kids became good sleepers because I had night nurses, because especially with crew, I didn't know what the heck I was doing. And he. He's never been a great sleeper, but he was not good at first. And I would have these sweet nurses come in and I would be like, good luck. We are two months in and we're getting two hour stretches. Wish you the best. I'm off to sleep. And so I would go to bed and we would wake up the next morning, I'd be like, how was it? And they would be like, it was amazing. He got a seven hour stretch.

And I would be like, what? That's so true. I literally remember your face. You were like, good luck. Yeah. I was like, oh, my God.

Yeah. Because you came with crew.

Yeah. Yeah.

And then. But then you taught me your ways. And all of your nurses that I've. That we've had stay at our house, even with Bear too, are like, well, this is what you've been doing. We tried this. We pivoted here and we tried this. And every time they teach you new methods to try and legit, I feel like I owe my kid being a good sleeper. They're also like sleep consultants.

Yes. You should put that in the description. No, I'm a sleep strategist. It is like Lauren, CEO, founder, owner, sleep strategist. Yeah. Like you should be.

You deserve a title.

Thank you. Thank you. And we do. We have nurses trained too, to coach sleep training.

Yeah.

So we do, like, coaching as well.

Well, I don't. I don't. I don't know if mine were coached up, but they coached me up, and it changed.

Yes. That's what we do. We coach moms up. We love on moms and support moms and meet you where you're at. When we're in your home, you're getting a sleep coach. You're getting a registered nurse to support you, but you're also getting, like, sleep support and tips and tricks, and. Because every baby is different. And so, yes, I am trying to put out, like, a sleep training book, quote, unquote. But I'm like, it's just so much. It's gonna be great, but it's so much better when you have a nurse in your home to meet you, where you're at.

Totally.

And, like, make suggestions for you and your family.

Yeah.

And each baby, they're all just such.

Great people, and they love Jesus.

Oh, yes. We just, like, pray over those babies. Oh, my goodness. We pray. I've had sweet nurses tell me that they've grown in their faith since working for us because they feel like they're up all night praying. I'm like, that's so precious. They're like, I just never thought. I just had to pray the whole time. So when they hold the babies, they're just praying, and I'm like, that is. I'm so proud. I love that. Like, it's amazing. Anyway, it's the sweetest. It's like, the best job ever. Yeah. So, yeah.

Amazing. But then we. So that's how we got connected. And then we actually were going to Italy when crew was three months old with a group of friends, and we were like, he was an easy. A pretty easy baby, but we were like, we definitely need help if we're gonna get to maximize being in Italy. We'd never been to Europe.

Yes.

And so we took Lauren with us, and it was the best. It was like, the perfect. We got time with crew. You got time with crew. And we got to get away. Like, there's a night that we left him. One or two nights that we left him with you.

And we went to Amalfi coast.

Yeah. To the Amalfi coast. It was perfect.

It was, like, the best trip ever. To be, like, cuddling a baby and then eating really good pasta. Oh, my gosh. And, like, it was. It was so great. Yeah. It was a winner for sure. Yeah. Like, he's at an age where we don't want to leave him. We want to take him but we also want help. And I was like, I got you. Yeah, this is perfect.

Yeah. And then since then, we've just been friends, and we have so much to talk about today. I'm. I'm really excited and hopeful and, you know, just lots of mixed emotions, but really happy you're here.

Thank you.

All of that to say. It's been a fun. We've done so many all over the place things together, from night nursing to Italy and then now just getting to be friends. And yeah, I would love you just tell everybody a little bit about yourself. And if you want to talk about, like, what it was like starting Choose Joy about your family, obviously we get to talk about Lilyann today, which will be sweet.

So sweet. So, yeah, I felt like Grace was so sweet to talk about Choose Joy Nursing and her night nursing experience because it is a gift and an the honor of my life apart from being Lillian's mom and Wilson's wife, but to run Choose Joy Nursing because it's just the sweetest. It is the most special role. And so anyway, I run Choose Joy Nursing, and I just love. I have loved kids and babies my whole life. Worked in the church nursery, did a preschool. One summer, I was a nurse in the hospital. I did ICU briefly, a year and a half or something, and then transferred to Mother Baby. So I got my hospital experience. Love loved Mother Baby. And then a high school called, and I was like, is mother baby postpartum? Yes, the postpartum floor. I didn't love.

Love the postpartum floor.

It's the. It's so sweet because.

Because I've just had such great experience.

So that was my fate. I loved that role. And then a high school called, wanted me to be a school nurse. And I was like, okay, it can't be those hours. I was off on the summer. Like, it was like Monday through Friday, 7 to 3. I was like, this is sweet. So took that job, but then missed the moms and babies. And I'd already nannied for so many people. I'd babysat for so many people that Choose Joy Nursing. I want to say it kind of made sense, but I also was very hesitant to start anything to run my own business. I was like, I'm good for just working for people. Like, I didn't really originally plan to start my own business. And so many speak. People spoke life into me and then to. And just like, believed and felt that calling for me in some ways. Like, I had so many moms be like, if you hire people and you train Them. I will use them. I was like, really? And then even Davey called me one day and was like, I think you have to start this. I was like, wait. Okay. Thanks. And so it's just been the coolest. Excuse me. Oh, bless you. It's just been the coolest thing to be a part of is I just feel like I'm truly, like, living in my calling and God is directing my steps every step of the way. Like, when people ask me business advice, I'm like, I don't know. Just pray about it. I don't know what to do. So we. That's how I feel about running my company. I'm like, we literally just pray about every decision. And so. So anyway, I'm Lauren Johnson. I own Choose Joy Nursing. I'm Lillian's mom. And that's. That's me. That's my story.

Yeah. Davey felt so strongly once we got to know you. He was like, she has to do that. She is made for that.

Thank you.

I mean, anyone who knows you would say that too. And I. We can talk about this more as we talk about Lillian and her life and. But I. I feel like everyone loves you and has wanted to do so much to support you and love you in the season. Been insane, but it's number one because you're just so awesome. But also, you just loved, honestly, like, the Nashville community, so. Well, especially the Nashville community of moms. So I feel like as y' all have walked through this, everyone feel. I feel like I'm like, I owe my life to her.

That's what I feel like.

Just the way that y' all have loved us through having babies and even just the baby 101 class, I think when you're dealing with babies, newborn babies, you're in such a vulnerable state because you just had a baby and your body is kind of wrecked from it. Someone's in your home either doing a baby one on one class or staying the night in your house. And, oh, yeah, it's very intimate. It's so intimate. And you have to trust them. You have to feel at peace with it. Like, you're such a big advocate for guarding your peace. And that is a time of your life when you have to guard your peace and you're having to put up boundaries with people who might feel hard to do sometimes. And so to let someone in is a big deal. And it's like, it's just so easy to do that with the people with you, with the people you've hired, with the company you've built and so, yeah, I just want to commend you for.

That, but thank you. It's been. That's. I guess I didn't explain. The postpartum world is so. You're so vulnerable. You are going through so much change. That. That's where my heart was when I wanted to start this. I felt like babies. There's so many baby classes and baby things and baby this, baby that. But, like, moms need to be met where they're at, and moms need space held for them and moms support. Grandparents run over to meet that sweet baby. And your mom, I'm sure, is loving on you. And my mom loved on me, and we're great, but I just, from a, like, nurse perspective looking in, when I was the postpartum nurse, everyone ran to greet the baby, and I just felt like moms needed to be seen and loved on. Yeah. And it's such. Oh, my goodness, now that I've been through it myself, having my first child, like it. It is raw and real and brutal, but beautiful. And so that's where Choose Joy really came from. The name is like a whole nother story and a whole nother podcast, but it was really just about me wanting to show up and love on moms. Babies, in my opinion, are easy. It's the moms that need the most, like, grace and love and being poured into and prayed over. And so, absolutely, when we're holding your babies at night, we're praying for the moms and dads, too, and praying over that house. But, yeah, it's the sweetest job in the world. And thank you for those sweet, kind words. And it make. In some ways, I'm like, oh, my goodness. Like, no wonder it's tugging on everyone's heartstrings because they're all moms who have babies in here. My journey and my story. It's wild. But thank you.

Yeah, of course. All that said, do you want to talk about Lillian and your pregnancy and just what the last year has looked like for you?

Oh, my goodness. Like, don't. Do we have enough time for that?

I know, but, yeah. Want to preface, because a lot of people watching this, I'm sure know you and just want to listen to support you and hear updates on how you've been. And before we recorded this podcast, I'd reached out to you, which all this will make. Make more sense if you don't know her story after we talk through this. But we just kind of have been holding today loosely because it is really fresh. And I've told. I Told Lauren, like, when I was dreaming about what this podcast was going to look like and praying about who to have on it, she was at the top of my list. And I made that list when Lillian was here, and I just reached out to her and I was like, there's no pressure. If you say, I don't. I'm. I don't think I'm ever going to be interested in that. And coming on a podcast, that's great. If you say, maybe season two, maybe season ten, if I end up having multiple seasons of this, like, that's great. This can look like whatever you want to, but I've just been so inspired by. Even with the timing of it, the way that you were, like, the purpose of her life, the purpose of everything that's happened has been to give God glory. And I feel like he's calling me into speaking about this. And so here we are, sitting and getting to talk about it, and I'm so excited just to get to honor her life and hear your heart, because your heart is so beautiful. And anyways, we just. I know it's a hard conversation, but I'm thankful that you're here. And I think that when we say yes to things and our vulnerability, people connect that.

Absolutely.

And God gets so much glory from it.

So that was my thing is, like, right now, it's God can only get the glory. Like, I don't know how I'm standing other than. Or I do. It's Christ. It's Christ in me. And that is the gift of being a follower and a believer of Christ. And I'm just like, I'm blown away with it. When I look at, I'm like, how am I waking up? How am I getting up every day? And so when I see my own self on watch myself back on my phone, I'm like, this is Christ in me. This is the only reason I'm still standing. And so when Grace asked, I was like, yes. I don't know how. I don't know what's going to happen, but the answer is yes. And I'm just going to show up and say, okay, God, like, you work, you move, you speak through me. Yeah. And so that's my prayer coming into today, is that we honor the Lord and Lillian's life and we share her story. Yeah.

So good.

Yes. So good. So I found out I was pregnant back in October, and it was like to be the baby nurse, and then to be like, I'm having my own baby. The joy and the excitement, and I really. I never had any fear about anything going wrong. I just felt like the Lord was gonna bless it and it was gonna work out. And I loved being pregnant. I love pregnancy. Like it was just groups of people. Yes. I was about to say, I know that is not everybody's story, but I loved it and I thrived. And I so excited to like this is going to sound so silly, but to like make content. Back in the day it went called content. I just like taking pictures of kids. Cuz I loved babysitting. I loved babies like my whole life. And so I was like, I want to have my own. And I like wanted to take pictures of her. Like I was so. Or him or her. We didn't find out the gender. Yeah. We did not know. It was literally the whole time. I know it's wild. And so anyway, we had this like blissful, wonderful pregnancy. We did do genetic testing just to like prepare and plan and kind of have resources in place if needed. But everything came back good. They don't. This is super, super rare. And I'll share. So pregnancy was great. Give birth. Beautiful. Didn't go as planned, but still beautiful. Brutal birth. That's just birth for you. So we have this little girl and we knew the names. We knew both boy and girl names that we knew. It was Lily Ann and we were just head over heels. So excited. I was gonna have night nurses. We were gonna do all the things. I was on the books anyway. We were so excited. And so I was on the books. I was on the books. You say that. Hey, you gotta get on.

Gotta get on the books.

Yes. So we had saved a spot for me on the calendar and we were so excited. Kissing on her loving honor. Like having friends come visit. I was not like I wanted people to get. I was so excited to share her. Like I was just so proud. And so we go home and we're blissful and like meal trains already started and we're like just blown away by everybody wanting to love on us. And then that night she just like wasn't. She wasn't eating well and I was attributing it to that like newborn sleepiness and sometimes Billy or been being high like. But hers was normal. So it wasn't that. But I was like, maybe she's just a sleepy baby. And so then we let her rest. We kept trying to feed her, but let her rest. It's okay. Like an I'll try formula, breast bottle, anything. I'm like, I just know she's got to eat, she's got to have calories So I was kind of like opened anything and I'm a nurse. I was like, it's fine, we got this. And then Wilson's like, I think she's cold. And I was like, okay, well that's not normal. Like sleepy is one thing. Cold, no. So I stick my hand like in her shirt cuz she's all swaddled up, all bundled up and like her actual skin was cold. And I was like, this is not normal. And we immediately go find a thermometer. It says like 91 something. We're like, this is broken. Like there's no way. So I get her skin to skin immediately and then blanket over us. And then like while she's on my chest running around looking for another thermometer, I grabbed a heating pad immediately because I just knew where it was. And I was like, okay, let me. I mean I think I got to heat her up, but I was also like kind of so confused at this point.

You're also postpartum with a newborn.

Literally just gave birth, like in my big diaper, like exhausted, haven't slept with labor. I think was like 24, 30 some hours. Like, yeah. Anyway, so yes, exhausted with a newborn. And Wilson ends up looking at me and says, are you scared? And I said yes. And he was like, then we're leaving, we're going to the er. I was like, okay. So we get in the car, we go straight to the ER and we bring her in. I'm like, I'm the nurse, like the newborn nurse. I'm like, I'm the nurse that takes care of newborns and I'm at Vanderbilt Children's Hospital. Like I was really having a hard time like kind of processing all that and like, okay, Lord, like is this like if I was like, this isn't real, like what is happening? And so what we thought was going to be, oh, they'll just give us some antibiotics. She picked something up, some germ, some bacteria, she'll be fine. Turned into a month long stay in the hospital, we found out she had citral anemia. Her ammonia was sky high. When they finally got pneumonia back, it kept clotting, kept clotting. The doctors had ordered it, so I'm grateful that they had tried. The nurses were trying our nurse. I remember advocating for us so well. And it was so kind. They had ordered what an ammonia draw. So it's like a lab value that most people wouldn't even think to check because it shouldn't be high. It just. And so they Once we had been there long Enough. They're like, let's check an ammonia to be safe. Let's just rule it out. Like, super rare. And so it kept clotting, meaning they couldn't test the sample. So then our nurse called the lab and was like, what's the deal? And so then eventually we get a number back that's super high. So the doctor walks it over himself. Like, people were so kind, and we felt like the Lord was still providing in the midst of our valley and our, like, worst moments, we were like, okay, he's holding our hand. Like, he's literally walking us through this. And we get to a point where I'm sobbing over her bedside saying, something's not right. Something's not right. Like, your mama heart just knows. Yeah. And the nurse said, we hear you, mama. We hear you. That means something. So they got another set of ABGs, and immediately we're like, we have to intubate. And I was like, of course. Absolutely. Like, I didn't know what was going on. I mean, I did somewhat, but we didn't. At this point, we didn't know it was her ammonia was really high, and we didn't know that that causes so much brain damage. And anyway, so we have to leave the room for them to intubate. And I was like, I know. Do what you have to do. And, like, a lot of babies do code, which means you have to chest compressions. Like, she was about to pass away. Her coloring was awful. She looked awful. Being a nurse, I knew. And I was like, this is not good. And so they intubate her. Wilson and I leave. We go down to this, like, koi pond garden, and we are praying so loud. We are sobbing so loud. We're crying out to God. And I literally, out of nowhere, thought, I need more people praying. I was like, I don't want it just to be us two in this garden. And so we text our parents to come. And I said, do you care if I post on Instagram? And I had no idea then what that would mean, but I just said, we are begging God for answers. And so I post her picture, and we get flooded with prayers and love. And just, like, I have massive goosebumps, but you can't see them. And the Lord, literally, in that moment, it was like the peace that surpasses all understanding was real. I mean, don't get me wrong, we're still crying, but it was. We were like, he's holding us. Yeah, he's going to make sense of this mess. And that's exactly what I Thought I was like, okay, like, he has to do something with this now. This is about him. This isn't about me. People are looking to him. And so we find out she has citrullinemia, which means she cannot break down protein. And you need protein to live. Even if you don't eat and consume protein, your body thinks it needs protein so it will utilize your muscles that were created in your mother's womb to get protein. And so for her not eating because she was kind of refusing food, or she was refusing food, she was already in a catabolic state where she would just utilize, utilizing her own muscles for protein.

Like, what is that? What do you mean?

How to. Like, so breaking a catabolic state, meaning her body was essentially like, sound bad, say, eating itself, but like, breaking down its own protein for food. So, like, if you're starving yourself or fasting, like, you're eventually breaking into some muscle mass and you're going to start utilizing whatever the Lord's given you.

Yeah.

For energy store, like, source. And so she was utilizing her own muscle for her energy because your heart still wants to pump, your, you know, lungs still want to breathe. Like, your body's still doing what it was designed to do. But her little body couldn't break down protein. She was missing the ass1 enzyme. And so in the urea cycle, this is all. We're not gonna get in the weeds of all this because it's even a lot for me as a nurse. It still blows my mind and overwhelms me. But in the urea cycle, her break and her cycle was super early. Therefore, like, I'm like, nothing else worked, obviously. It's not like, oh, you just pick up where you left off and complete your cycle. It's like, therefore everything was kind of spinning out of control.

What's a Yuri cycle?

So, well, that'd be. That's like getting in the weeds of it that I can't even explain. We'd have to have like, okay, it's. That's. It's a lot.

But it's a vital cycle in your.

Body that needs to have vital. Vital. So, yes, to break down protein, you have to have. Well, actually, I think there's a lot of things involved anyway. I don't think it's just protein, but it is vital to live.

And so as you say things, I'm like, what does that mean? I'm assuming other people are probably.

Yeah.

When it comes to medical things. So I'm. I'll try to ask questions here and there if I Think of something that. But that's a great answer to be like, that's way too complex.

Well, and if it's yes, if I'm like. If it's overwhelming to me, like, with a nurse background, I could only imagine it's too much for, like, everybody. So, anyway. But anyway, she had a break in the urea cycle, which is too much to get into, but she. It was vital to live. And so there was a lot of conversations and a lot. First it was just seeing how her brain would come out of this. It was like she. So once she wakes up, which took days for her to even wake up out of this coma from the ammonia in her brain. So when your ammonia goes up, it causes brain damage. It's literally just like that. Ammonia is toxic to the brain. So therefore, she just goes to sleep. Like, she wasn't feeling pain. Which also was a red flag to me as a mom and a nurse in the IC or ER when we came in. And they were like, we're gonna stick her. We're gonna get blood, we're gonna get urine. We're gonna do all these things. So anyway, we're in the ER and we're trying to get blood, we're trying to get urine. We're trying to test anything and everything to find out what's going on with her. And she didn't even flinch. Like, there was no whimper. They'd say, mama, she's gonna cry. They were so sweet. And the nurses were so kind to try to, like, prepare my heart, but she didn't. And I knew. I was like, this isn't normal. Like, she didn't feel it, which was great. But then when it. We learned about her disease and we learned about the process of her disease and all the brain damage that had occurred. And I started, as a mom, having such a hard time with her waking up. It wasn't that I didn't want her to. It's that if you wake up that sore, like, she had been poked and prodded everywhere. So then I was like, oh, like, she's gonna wake up so sore, so disoriented. Not in her mother's arms where a baby should be. Yeah. She was laying in a bed with a big, bright light and, like, heat over her with all these tubes and wires everywhere. It felt cruel. It didn't feel kind. It didn't. So we. That was something else we really had to pray about. Like, is this the Lord's will for her life? Like. Like, what is he? Was he trying to call her to heaven and we were, like, saying, no, God, we're in control. And so that was hard because what.

Was happening in that moment would have been the reality for her whole life.

Because her body, physically, it will keep occurring. There is. You can do a liver transplant, which, as of right now, there's just not enough research out there to know any better. Like, if we could have replaced the ass1 enzyme, if we could know where the break is in her cycle and fix that, or if we could do gene therapy. Like I said, pray and hope. There's, like, research down the road, but in the moment. And as a mom, I didn't want that research done on my baby. Like, it felt like. And I'm a nurse, I love research. But it was like, she is a ba. Like, she's a baby. You should be kissed, cuddled, and loved. She shouldn't be poked and prodded and be a research experiment. Yeah. And so that was really hard. And that's how we felt. Like, for some reason it was. I do believe the Lord, we felt very against the liver situation. Not that anything's wrong with getting a liver transplant. Like, that can be. There's a time and place for everything. And what the Lord could tell you yes, about. He could tell me no about. He's told you yes to starting a podcast. That is a no for me. Like, and that Lord has not put that on my heart. I'm so grateful. But same with the liver. Like, a parent could get a yes, and we got a no. And so we were like, this is not on the table for us. So how can we take care of her without that? And so we were going to manage with diet and with medications and love her and kiss her as much as we could. But we knew inevitably, at some point this would happen again. Our understanding was it would be happening every single growth spurt, every single time she would try to break a tooth. Because if you think about how much protein your body utilizes for energy and for growing, and babies are growing so rapidly, we thought it could have essentially happened at any moment that her ammonia would spike. And, like, I also felt like it wasn't fair to. I don't know if that's the right word. Fair is not the right word. But as a mom, to live in this fear of any moment, my child, ammonia is gonna spike. And what do I do? And, like, going to the hospital, the sign of an ammonia spike or ammonia rising is lethargy. So sleepiness. They're babies. They sleep. And so, like, yes, they can get fussy, they can have vomiting, but like, she's a baby. They have fussy and vomiting and spit ups all the time. Yeah. And she didn't eat by mouth because of the brain damage. So the people who saw all the pictures of her with her NG tube, which is the nasogastric tube that goes into her stomach, that's how we fed her because there was so much brain damage. Like, she. The suck, swallow, breathe at the same time was really hard for her. She can suck a paci, she can breathe. And she even could eventually, at some point in her life, eat purees, which was so sweet and cute to, like, experience, but she couldn't drink from a bottle. That is something that seems so easy to all of us. But for somebody with brain damage, it's. And some a baby, that's a skill they learn. And so she never got to try it. She was in the hospital intubated and on tubes and lines and wires. And so anyway, she never got to really learn sex while I breathe. And we worked and worked at it, but at the end of the day, like, the tube is what worked for her. And I was okay with that. Like, I mean, of course I was gonna try and practice with her, but, like, if she choked and gagged and hated it, I was like, okay, we do something else. Yeah. Anyway, so that was from her hospitalization and the trauma that comes with that and the brain damage, that's what essentially caused that, more or less. But anyway, so we took Lillian home on hospice and with palliative care just for us to get to enjoy her and her to get to enjoy being a baby. Like, and it was a calling. That was not something that we chose lightly. That was something we prayed and prayed and prayed about and cried and cried about. Like, God, are you for real? Like, we're really gonna take home a baby on hospice? Like, but in some ways, it felt so beautiful and like hospice was the best thing we could do for her to honor her life. It wasn't about how long I get to be a mom or like, it wasn't. It wasn't about me. It was, how can I honor her the most and the best. And it felt like that was what we felt called to do. And we felt like we wanted to kiss and cuddle her and love on her and take her home. I'm also a big believer in, like, co regulation. And like, a mother is their child's co regulator, which is a huge part of choose to nursing too. Like, your nurse comes in and can help co regulate. Like, when we're confident and you're like good luck. You got it. A nurse in a hospital can be a co regulator. So it makes all the difference in the world when you have a good medical team and a like good support system and a Bible study and women praying for you. And so when I posted for prayer, feeling all that prayer did make and knowing so many people were covering us in prayer. So anyway, I'm a big believer in CO regulation and a mom is her child's CO regulator. Dads are great co regulators, but a lot of times husbands and partners are our co regulators and like we are our child. And so having these healthy, safe connections are vital. And it was so hard to co regulate well in a hospital setting with, you know, neon lights and beeps and you're not sleeping in the room with your baby. I mean, I guess you can, but then you're not getting sleep, which then without sleep. The reason I once again I keep bringing up choose joy nursing. I'm not trying to, but it's why I started the company is how important sleep is for co. If you don't have good sleep, you can't co regulate well. The next day you're shorter tempered, you're. I mean you can't think clearly. We're making huge medical decisions every single day. We would meet with a minimum of five doctors per day. It was wild. Like the amount of people on her team, the amount of people we were meeting, the amount of nurses they change every 12 hours. Yeah. And as much as I'm a nurse and I get it, it was exhausting and that had to be hard on her little nervous system. And so I still obviously have a hard time with like that whole month of her being in the hospital and like not getting to. We co regulated and loved her as well as we could, but there's nothing like having your baby skin to skin and off of all the machines and no lines attached because our body does like keep score. Like your body. There's just trauma to her little body and she had a perineum tear. She had wounds all over her from IVs that had blown. She had a huge catheter in her neck that left a huge scar. And that's okay. I'm not saying she's any less than. She's beautiful and worthy and wonderful. But as a mom, it broke my heart. It was so hard and it was so different being a nurse versus being a mom. Like, oh my goodness. People always said it'd be interesting to see me as a mom because being a nurse I can see people through some of their hardest days and their sickest moments. And I can, you know, turn patients. I worked in an icu, but seeing a baby like that and seeing my own baby like that, it was gut wrenching, to say the least. And so we took her home. We got to kiss and love on her and co regulate so well. And if I had a moment of breakdown and. And I'd cry with her, I'd absolutely cry with her. I think that was healthy and healing for her, too, that, like, we're both crying and healing and repairing and restoring what was taken from us that month in the hospital. And we prayed and prayed over her and that our house was so filled with peace, so filled with the Holy Spirit. Like, we played. We had worship music on at all times. It was the most, like. Like serene and, like, tranquil. And people would walk in to visit. It was like they'd literally all comment, like, this house, like, what? I was like, it's Holy Spirit. I was like, we're praying over every minute, over her, every minute of every day.

And I'm sure that was affirming too, with, like, making such a difficult decision, going from such a lack of peace in the hospital and it being so traumatic and uneasy and everything that is not the Lord, like, anxiety, trauma, all of that is not God. That's not who he is. It's not his spirit. And then going home and experiencing the complete opposite. I'm sure a lot of people have been through what you've been through and choose to navigate it differently, might have opinions on what you've done, but at the end of the day, when you walk with God and you feel peace and decisions that he. You feel him leading you to, then it's like when you can compare the two, I'm sure for y' all being home, it was like we made the right decision because this is what it's supposed to be like in these. All the things that we're experiencing, all the things that Lily Ann is experiencing are of God. And. And I think God, if people are supposed to stay in the hospital, can give them.

They'll have. They'll have those things in the hospital. Amen. Thank you for saying that, because that has been. That's also been. Is like there are so many opinions and people have. We had a block, some people, whenever all this first happened, because people viewed things very strongly and very differently than us. And it was at the end of the day, we had to go where the peace was because we knew that's where the Holy Spirit was leading us. And I'll be darn. If we got home and there was not peace there, then we could have gone right back. Like, you have the ability to change your mind. And that was beautiful. And they kept reminding us that they're like, if anytime you just say the word, we can pivot. Like, everyone was so wonderful. And our hospice team was so wonderful. And that peace of mind, it brought me to not to know that I had somebody to call any hour of the day with any question. And that just because she was sleepy, I didn't have to take her to the er Just because she threw up, I didn't have to take her to the er. I got to call hospice nurse to come and see her and lay eyes on her and love on her. And for me as a mom and the importance of co regulating with my child, my peace was. It was so important for me to protect that. And the Holy Spirit was giving me so much peace at home. And so thank you. That that's good for me to even hear honestly. Like, yes, I know that. But then to hear it and to hear that affirmation, it's like that's where the Lord wants to be. That was our calling. That might not be other people's. Yeah, it definitely isn't everybody's. And we're grateful. We are so grateful that that is not other people's circumstances. But anyway, we were exactly where we needed to be. The Lord was so present. The way he went before us and prepared our communities and our. My work, the fact that I worked for myself and I could just be home and I had hired somebody full time, had officially offered an employee's salary to come and work full time, hours to come work for me, which is a huge leap of faith. Like, I worked for myself. I didn't. There was no deep pockets, There was no funding. Like it was me. And so for the Lord to bless that time like, so my thing when I hired her full time was that I just want to be home. I know how fleeting the season is. Babies do not keep. And so I wanted to save her. And I was going to have night nurses at night, so it was. I was gonna savor this sweet baby no matter what. But then for our circumstances to be what they were, it was just like, I need to. I needed to save her more than ever. Like, I couldn't. There was no. Anyway, it was wild. And so I'm so grateful I had. I was able to turn work off and my girls were so equipped. I had had all these like, events to like, be sure they Were prepared for me to take a maternity leave and, like, loved on them and did stuff for them and educations and handbooks and policies and procedures and just, like, all the things to be sure we were, like, equipped and set up for me to have a maternity leave. But then in reality, it was for me to be. And it was the Lord preparing and making a way for me to be so, so present with Lillian and, like, not to have to lift a finger at work. And then my girls turned around and loved on me. Like, once we got home, it took a minute. I didn't have nurses right away at night just for the sake of, like, we didn't know if we had days with her. Yeah. But then once I got to a point where she was hanging, you know, hanging in there and she was doing okay and, like, sleep, I knew would be healing for me. I knew sleep would help me love on her more the next day. And so we had the night nurses start coming when availability allowed. At this point, like, I was way past. I had been in the hospital for a month, so I was way past my contract. But anyway. And so I had night nurses come and I would cry every morning because I was so happy and I was so well rested. And I was like, I. I love her more. Is that possible? Like, I just had more to give. I wasn't pouring from an empty cup. And I said, oh. And like, I did. I felt the Lord in the hospital tell me to save her. Like, I heard that word over her life and just over our circumstances. And so I was able to savor well and to love her well. And it was such a gift. And so the Lord just, like, kept doing what he does and, like, giving her life. And she was healing and she was getting better and scars were healing and wounds were healing and she was gaining weight and starting to, like, reap, Put hands in her mouth and teeth until we're like, okay, maybe we need to do something about this. Like, in G tube in her nose. Like, maybe it is time for a surgery. They had asked about getting a G tube before we left the hospital. Like, would this make your life easier? And I was like, yes, it would make ours as parents easier. But it's not fair to her. I don't want to put her through another surgery. Don't want her intubated again where her sort her throat sore. Like, I just don't want to do that to her if she's going to meet Jesus at some point. Which one thing a doctor said to us with our circumstances that, like, forever Touched like my heart and like my faith muscle was that of all ways to pass away. Like, we all say, we just want to pass away in our sleep, right? Like you, a sweet old lady, you just want to. Like, you would think of her passing away in her sleep. And that's what they said Lillian would experience, like, with an ammonia spike, her ammonia would go up and she would go to sleep. And then obviously, do things do happen in your body that are not pleasant, but she wouldn't feel any of that. She'd be in her coma state. And so it also brought us peace knowing that if the Lord calls her home, if and when the Lord calls her home, she won't be in pain. It's like that ER mission where they poked and prodded and messed with her, and she didn't even flinch. She didn't even cry. She's not going to feel pain. We are going to feel pain. As her parents like this side of Heaven, we are going to hurt, and we know we will hurt. But we knew she would get to meet her heavenly father face to face. And we knew was she. She would be in his glory, and she's the one who wins. And so it felt like the nicest thing we could do for her. At the end of the day, no matter what surgeries we were willing or not willing to put her through, at the end of the day, heaven was better. I felt like, heaven's better than our best days on earth. Heaven is better than Bora Bora. I feel like. I say, like, that's on my bucket list, but I'm like, heaven's better than that. Like, heaven's better than Italy. Heaven's better than just all of it. And so I was like, at the end of the day, if she just goes to sleep and meets Jesus, like. Like, as a parent, like, what more could I actually want for my kid? And so, yeah, I mean, that was like, talk about surrender. Like, holy cow. Like, okay, God, I wanted to be a mom, and I did, and I am. I still get to be your mom. But I didn't know that's what this meant. Like, I'm truly having to live with hands open, saying, God, she's yours to do with her. Give us as much time or as little time as you want, but I'm trusting you with the number of days. So we moved forward with the G tube surgery because we felt like that was the next best thing to support her and keep her comfortable and bless her so that she could play or roll or move or eat or whatever she Needed to do without a tube in her nose. And so we put her through the G tube surgery. That was pretty brutal and also not fun. It was a struggle, too, but we survived. Once we got through that hump, we were like, okay, she's getting better again. And we did. We healed with kisses and cuddles and prayer and Jesus in our home. As soon as we get her home, she turns a corner. And so we got her home again and loved on her. And she started. I mean, she was thriving. Like, that's what, like, I think was so shocking about her death and her passing was that, like, everyone saw how perfect and beautiful she looked. She was radiant. Yeah. And she was filled with joy.

And I think she looked just like you, literally, when you posted your birth announcement photos, I was like. Because I usually don't think that when I see newborns, it's really hard for my own kids. I'm like, I don't know who they look like. I can never pinpoint. When I saw her, I was like, okay, carbon copy of Lauren Johnson.

That's so sweet. And what? As she got older, everyone was like, copy paste about Wilson. Everyone here saying that.

The other day, I was like, what?

Every. So you saw me. Okay, well, thank you. So many people literally, are like, wilson's twin. Wilson's twin. Wilson's twin, definitely. I saw both of us in her, for sure. Yeah. But she was beautiful. She was happy. And I, of course, didn't post her breakdowns. She did throw up a lot. She had a feeding tube that pushed food whether she wanted it or not. She did have some serious meltdowns and fussy moments. But, like, that was another beautiful thing is I did sleep trainer, because at one point it got to where, like, she was fussy all day and all night, and I was like, okay, this isn't. I need to start treating you like any other baby and not just hold you all day. There's nothing wrong with holding your baby all day, too. We literally would not put her down. Like, and rightfully so. Like, this is, like, a special situation. But it was for her health. Like, I felt like by holding her, my heat. I'm hot natured. She's hot natured. Like, we were just, like, not comfortable at one point. I was like, if I put her down her bed, I think she'd sleep so much better. And so at first there's some fussiness because she's like, well, I don't know how to fall asleep. You know, like, what? But then once we did, like, she learned how to sleep in her crib. Oh, it was the sweetest, sweetest thing. Of course, I, like, did miss and wish she would, like, contact. Nap, nap. But she was so happy when she woke up. She slept so good. And she loved her loveies and she loved her cribby. Oh, we like, that girl was so, like, she loved her routines and rituals, which is so like her father. I can, like, fly by the seat of my pants. And Grayson called me, like, you want to go to Italy? And I'm like, I'm down. Like, you want to go to the beach? Pack my. Like, I'm. I gotta carry on. Ready to go. But anyway, Wilson's really structured, and Lillian loved a schedule and loved to structure. And she ate. Like, I mean, we. We had her on a great schedule, and we all thrived and we were killing it. And, like, then she got the flu, which was, like, the scariest. Like, is she going to wake up in the morning? Because they said, you know, any metabolic change can cause pneumonia spike. And so we were terrified. And then she survived. We're like, okay. God, you have big plants. Like, you. Like, what are you doing? We're grateful. We're here for it. Like, we're planning Easter. We're planning trips. Like, I had a beach trip planned. It had the matching swimsuits, like, all things. And so we survived the flu. We're kind of like, going about our day to day. I took a trip to New York for a friend's wedding. Like, it was really sweet. We were only gone for, like, 36, maybe 48 hours, but came home and was so excited here. And she was so excited to see me kick in, like, and I was so grateful. I don't regret the time away from her because I felt like it made me a better mom when I was with her. And I don't regret the nights that I had someone help me. I don't regret the time. Oh, I had my mom and mother in law Mondays, Wednesday and Friday. I had help because in the beginning, we held her for two hours when we'd run her feeds. And we had to have her upright, like, head here, body down for her to not throw up. And so I needed extra hands to just go potty or to just feed myself. Like, we needed hands. But we were also protecting our space. And so it was, like, tricky to navigate. But then at the same time, I knew asking for help was going to serve her and me well. And I'm so, so grateful the grandparents got that quality time with her. Yeah. And so I would, like, leave and go get my hair done or my nails done, or I'd go eat lunch with a friend and come home and be so happy to see her. And it was so, so good for me, and it was so good for her. And I don't really regret any of that because I just felt like the Lord was blessing it so much. And I had a moment where I felt I threw my back out like, a couple. I know, like, not too long ago. And I had this, like, breakdown after she had passed away. And I was, like, sobbing, telling Wilson, like, I. There's a whole week of her life. I didn't hold her, and I was just crying. And he was like, babe, you cannot do that to yourself. Don't beat yourself up. Like, you couldn't help it. Like. Like, you. Like, that's just not fair. And he's great at holding space for me and letting me feel all my feelings and letting me cry. But, like, that he was like, babe, that's just not fair. Like, yeah, you can't help it. And I felt the Lord say, it was for you, for them, not you. It was for them, not you, for them. All the people that had helped me. So I know. So that week, I couldn't lift her. Therefore, I had helped. 24 7, Wilson was either home like my mom. If Wilson had work, my mom would be there, Babysitters would be there. I had help around the clock for, like, and it was now, like, to be, like, it was for them to get that special time with her. It was for them and for me to learn how to receive help. Like, I already felt like I was kind of good. I was letting people help me. But, like, I truly had to depend on people in a different way and to learn how to receive help and for them to get that quality time with her. And so, like, for the sweet babysitters that we've taught, like, Grace knows one of our sweet babysitters, and then we have another sweet babysitter from Lipscomb. And I mean, for them to get that time with her and then for the grandparents to get that time with her. Like, we always did bath time will sny together. And I think my mom got to be there for a bath that night. And then one of my co workers was like, I picked her up that week. I helped. And so it's like, people got time with her that they wouldn't have got otherwise. And so, like, that I know, like, the Lord is just providing in all the details.

Also, I feel like a lot of parents who have kids with who are diagnosed with Illnesses that there's no cure for.

Like this.

The whole. It breaks my heart for people who. Their whole life is just marked by, like, they don't have any sense of normalcy for the. Their. Whatever time their child has. And because of these things that you did for some people, I think, number one, it's a reflection of just your trust in God and the piece he's given you to be able to be like, yeah, I don't know how much time I have with her, but I am gonna do things so that we can actually enjoy the time that we have, and I'm gonna make decisions that are best for both of us. Even though rather than being like, I'm never gonna set her down the entirety of her life. And then your whole time with her, you were. You would be depleted.

Exactly.

You did things to take care of yourself, and you can look back on your time with her and be like, it was so beautiful and sweet and precious, and we have so many amazing memories versus the whole time you being depleted. You know what I mean?

Yes. Yes, it was. That's so true, and I'm so, so grateful. I do feel like that is another way that the Lord went before us, like, in what I teach for my career, that I teach moms, and I tell moms to really try to ask for help. Really let people come into your home and help you go on the girls trip. Do the thing that fills your cup. Spend time in God's word. Wake up before your baby. People like, wait, what? I'm exhausted. I'm like, it's somehow worth it. Like, yeah. And even if it's nap time or you find time, like, to get in God's word, like, it's worth it. And there are times that I'd be like, lillian has to wait. And Wilson's like, are you kidding right now? I was like, no, it's. I've got to get. I need to spend time with Jesus so then I can serve her better and I can love her better. And so, anyway, it was. Thank you for saying that, too. It's all, like. It's a lot of hard decisions to.

Make, and when you have conflicting opinions around things, I think sometimes it's just good to be affirmed. You hear the voice of God and you have a spirit of discernment in you that knows what he's leading you to do. And you do, and you did what was right for your family and for her, and I'm just so proud of you.

Thank you. Thank you. So it's another part of her Story that's kind of wild that we haven't even shared yet at all. I do plan to, like, talk more about it, but the week prior to her ammonia spike. So she did have an ammonia spike and she did go meet Jesus on April 6, for those who don't know. And we've obviously talked about her life and her death, but I haven't explained explicitly said that she passed away and she gets to be in the glory of God now. But the week prior to. Well, so April 6th is when she passed away. March 31st was our, er, admission to, like, be sure it was an ammonia spike. And then, you know, ended up. The Lord gave us some time for all the family to come and say goodbye and love on her and kiss her. And we had moments of being like, wait, is she being healed? Because she wasn't on certain medications. And we're like, what's happening? Like, she had some sweet wake up moments. And it was like, from the Lord, like, literally, like the sweetest little moment. But anyway, the week prior to that, even so I'm like, don't know where I am in the timeline, but we had a call with the liver doctors and we were like, all right, Lord, we want. We're kind of praying for God to soften our hearts to whatever and open our hearts, whatever was next. Because everything, every decision we made for her, literally every appointment, every prick we were praying about was like, if I have peace, that's the direction I'm going. If I feel uneasy, I'm putting my foot down and saying no. And so we were praying about the liver and is this the next best thing? Would this improve her quality of life? Because now she's wanting to eat, now she's wanting to put stuff in her mouth. Like, would she get to have a sleepover? She's going to be on meds for life. Like, she's going to have medical needs no matter what. But, like, she was, like, rolling and doing things and, like, could she. Would this improve her quality of life?

I remember you saying that you felt like for the first time you were envisioning a childhood for her.

Yes, yes. I think I had started planning the first birthday party instead of thinking about a funeral for once, which was, like, so sad and sickening too. But I felt like I started to see a future after we survived the flu. We were like, okay, God, like, this is so cool. And so we definitely did have more hope. And we called the liver team, and so of course they scheduled with us the next day. They're like the Johnsons are calling. Like, anyway, we were all kind of, like, excited and, like, okay. And here was my thing is, the Lord hadn't told me yes yet, but I wanted to be prepared in case he did. I was like, I'm gonna do all the things. I know there's a lot of paperwork. I know there's a lot of preliminary. There's a lot that goes on behind the scenes. So I was like, I just want to be prepared in case he says yes, move forward. And so. And I, of course, prayed about it, of course, talked to Wilson about it, and we. For a while, we're like, you know, not feeling strong conviction either way. And then all of a sudden, there was, like, I felt this in my heart, and Wilson was like, you've been very discerning, and the Lord's been so kind and so clear. Like, I completely trust you. And, like, I think we move forward with it, too. So we call liver team and have a call with them, and kind of, like, the information fell on soft, like, new eyes and new ears and a new heart. Like, we heard it differently. Probably the same thing she'd always said, but we just heard it differently. And we're like, okay.

This probably the first time you heard it was in the midst of her living a horrible quality of life in the hospital.

Yes. Quality of life was, yeah, like, no. And so then even. Yes. And so then even. And we had another call with her when we came home, like, two or three months later, but she was. It just still didn't feel like the right time for her. We were still savoring and letting her be a baby. But then now that we're talking about rolling and sitting up and she was picking up heavy toys, we're like, okay, like, you're doing things like, yeah, let's go, girl. And so the call with liver was great. And she was like, okay, if y' all give me a thumbs up when I hang up, I'm gonna start the insurance approval process. And we're like, yeah. We looked at each other. We're like, yes. Like, start the process. So we get off the phone, she starts her thing. And we said, we already had an appointment with genetics set up April 8th. And so she was like, great. That gives me time to do my thing. Y' all do yalls thing. And our whole thing with the liver was, like, with her neuro status, like, she was in there. Like, everybody saw her full personality. Like, I mean, she knew mama and daddy and Lovey and Pumpkin and her grandparents. I mean, she knew. She knew Elsa she knew everybody and she was respons. I mean, she was not that. And once again, please don't hear me say like, that's this journey is not what I'm saying. Every is for everybody. You don't have your children, don't have to know your name to think that, you know, a certain a surgery is necessary or not. This was just what was on our hearts in that season at that time. And so all that to say we were like, okay, we want to improve if this is gonna like, our, like, Lillian's quality of life is gonna improve from here than like, this is a win win. Like, this sounds. It sounds worth it. Anyway. And so we were gonna talk to genetics. April 8th. She passed away April 6th. And we did take her into the hospital when it. At first it really. She was perfect one night, just her normal self playing with her toys. We went to dinner that night. We actually had taken her out, which we didn't do very often, but it was fun and she was great. She's like, she's easy to really travel with. It's just all the stuff you gotta pack. But she herself is like, loves a good time and she liked being out and about. And so she was great. She was precious. We did her bedtime routine, put her down, and she woke up for some passies, which were like, not really normal, like for her, because she normally will just play with her loveies, not actually cry, just play and then go back to bed. But she cried out. So Wilson passied her and then cried out again. And he was like, tap, tap, your turn. So I like, go in there. And it was just. I didn't even in the moment, you know, you're mid sleep, right? So I wasn't even thinking. I just picked her up and brought her to bed with me, which I've never done. Well, I wouldn't say never. When we first came home from the hospital, I was like, there's no rules. Like, you do whatever you want.

It's out of your normal routine at that point, right?

Where I was like, hm, let me just like, see, I don't know. And looking back now, I'm like, that was such a maternal, like, instinct slash, really the holy spirit being like, yeah, this is a sweet time to have with her. And so snuggled her, got up that morning to feed her. And then she was just like, not herself, just fussy, fussy, fussy. And like, not with it. Like, not really locking eyes, not really acknowledging we were there. And I was like, something feels off. He's like, I think she's just overtired. And I was like, could this be her ammonia? Like, we've seen her fussy and tired plenty of times. She's a baby. Yeah, but it just felt different. And so we already had an appointment at Vanderbilt that day to have her G tube changed, like, switched out. And so we called him. We're like, hey, we're coming today anyway. Can we come early and get labs? And they're like, absolutely, if you guys are asking for labs. Because we don't ask for labs often. If anything, I might ask to skip them. And they were like, yes. And so we get in the car, like, we're pretty much like, okay, we're gonna feed her and then we're gonna go. And that feed was not going well. And I felt like I was seeing some seizure activity already. And I was like, oh, babe, this isn't good. And he was like, really? And I was like, this isn't good. And so I was like, let's just. I do want to go to Vanderbilt. Like, being on hospice, like, you could just call the hospice nurse. But I wanted to know for a fact it was her ammonia. And you have to check an ammonia with free flowing blood, ideally from a central line, but a vein will work just to get like a loose number. And so I was like, let's just go and be sure it's Harmonia and then we can decide from there. Because if it's an ear infection, we can treat. If it's a cold, if it's something else, like, we can treat, we can do something. And so we get to the hospital and we tell them. Exactly. And I was trying to avoid the ER because of all the trauma the first time around. And just like, that's just not a peaceful place really. But we called the doctors while we're in the car, and we're like, hey, I think it's already, like, we're coming for labs, but I'm already seeing bad signs. And they were like, go into the ER so you get your results faster. I was like, really? And they're like, yes, it'll be faster. So like, okay. So I walk in. But I knew what my goals were and I said what I wanted. I was like, we're here for pneumonia. She has citrullinemia. You can. Yes. They were like, can we swab her nose? Yes. Can we do this? Yes. Can you look in her ears? Yes. We didn't need any type of, like, certain. There were certain screens. I was like, I don't need that. I just need to know, like, 1. Is her ammonia high? But, yes, you can do some other little, like, things while we're waiting. But at this point, she's already, like, asleep, not really feeling much, not really fussing when they stuck her. And so I'm like, this feels like this is Harmonia. And it was. And so her ammonia came back pretty high, and we kind of decided, like, what do we want to do from here? The doctors are so respectful of our goals of quality of life and, like, loving her and kissing on her and letting her be a baby. But I had told her that if you want to meet Jesus, that Mommy won't get in the way of that. And that was, like, one of the hardest things to actually mean. But I did mean it. I was like, if that's what you want and if that's what the Lord wants, like, I'm not gonna get in the way of that. Obviously, he can give you life and life abundantly here on earth, if that were his will and his choice. And so we were in the hospital and we were like, yeah, we can try some, you know, D10 and we can try some things, and we can try to bring down Harmonia. And one of the doctors was sweet and just was like, like, lillian will tell us what she wants. I was like, good point. She will. So, like, we tried it, and Lillian, it wasn't even, like, crying. It was screaming. And there was no wake up and acknowledging us. The entire time this was happening. She was in a coma, sedated, or, like, neuromad screaming. There was no in between. And they did say, this can be normal when your ammonia is going down because there's brain trauma. She's waking up to this, like, gnarly headache. But, like, it wasn't like she was in. Like, she wouldn't look at us and be like, there was no. We just. I started wondering, like, is her little spirit already in heaven? Like, I didn't know and. And come to find out, it wasn't. But we tried some things. And at the end of the day, I was like. At one point, we were both sobbing. Lillian was screaming, I was sobbing, and I'm just like, what? It felt cruel, what we were doing to her. And I said, I'm getting in the way of you meeting Jesus. This. And I was like, this is what she wants, and this is what he wants. And I'm going to love on her and kiss her and cuddle her with as many days as the Lord gives us. And so we chose to go home. Like, the doctors, I. I do feel Like, I get questions about that, and I just want to make it clear that this was, like, our choice, and it's not. It was an awful choice that no parent should have to make. Sickness is awful, but there is the hope of heaven. And so we grieve, but with hope. We know with. Like, we know she is in heaven and her little spirit does feel so near. Like, she does, like, the peace that we have and the. Like, the veil being so thin between here and heaven. Like, she feels like she still gets to somewhat be with us, but, like, she's not in pain. She'll never want for anything. Like she is in the glory of the Lord. Like, she has the most joy. Like, she's who wins. And so, yeah, that's our story. It's a very long, heavy story, but it's also, like, filled with so much hope and, like, so much beauty. Like, God is so good and he's been so faithful. And I stood up at her service and said it was like, it was really important for me to get up there and still say God is still good. Yeah. Like, even though our circumstances are not, God is still good and he is still faithful. And he has been so kind to carry us and put the right friends, the right communities, the right small groups in our circle to love on us and to feed us and to nourish us. And anyway, we're just so humbled and grateful for everything that the Lord is doing in and around us.

Yeah.

I.

So many things.

1.

One of the things that you said that I've. That stuck with me because we. You said this before Lillian passed, but you had said to me, we're. I feel like we have connected on a. On a deeper level in this season, because at the time when we had this conversation, Lillian was here, but you were walking through heavy things with her. And we've been in a heavy season with my dad. And both of them had these essentially. I don't know if. Would you call the drill anemia terminal since there's no cure? I mean, there's like, treatments if you want to pursue those different things, but it's not like they can fix what's right.

Well. And you trade one disease for another. So they say a liver transplant's a cure for the citrullinemia. But then now you're a transplant patient, so you have those side effects for life and those doc hospitals or, you know, situate. There's no great, wonderful, perfect solution. There's no. So they call it a cure. You'll hear everybody saying the Cure for it is a transplant. But the reality of a transplant is that it's a transplant.

You have someone else's organ to get on.

Yes. So you have to be on a list and then. And nowadays you can do living donors, but then you put someone. There's just like a lot to that.

Totally.

Anyway. But yes, it's definitely a lifelong battle, no matter how you slice it or dice it.

Yeah, but you said on the porch of my parents house, when you dropped off that planner to me, you were just talking about how heaven is better. And I've gone back to that phrase so many times. And it just gives you so much hope. When you truly believe that heaven is real and believe that it's better, then like, my mindset has shifted so much through my dad's diagnosis, just in shifting to an eternal mindset. I live my day to day so differently because my mind is focused on eternity. And I think when you're talking about the veil being so thin, I think when you get a diagnosis like that or you lose a loved one that's so close, it just completely changes your. Your mindset and how you view your life, how you make your decisions.

Oh, completely.

The way you talk to people, you know, Completely.

I feel that, like, in my bones I'm just like, that's why I feel like I even had the courage to come do a podcast. Like, and now I'm like, I wanted to, but, like, also terrified of public speaking. And like, I feel called, but I also feel like the Lord is who's gonna bless us and use this for his glory. And like, I want the more people to hear about heaven, the better. Yeah. And the more people to like, truly see the peace that surpasses all, understanding the strength that only God can give. Like, we know that's how we're still standing. And y' all are navigating such hard stuff. Like, it is so hard. And to see a loved one suffer is what is also awful. Like, that is where I'm like, okay, heaven is so much better. And praise God that we're perfect and we're healed in eternity and we're in his glory and just the hope, like, the hope that heaven brings to live life differently. I literally. We went to Italy to grieve and just to run away and get away and just breathe fresh air and eat good food. And I was struggling to eat after she passed. Like, it just felt like there's a lump in my throat and I felt physical pain. I, of course I felt sad, but like, I wasn't like, in my bed, crying all day, I felt physical, like, issues. Yeah. And joint pain, and I wasn't able to swallow well. And anyway, so I was like, okay, well, if we go to Italy, maybe at least I can eat. Yeah, it'll. I don't know. I was like, maybe that'll make it better. Yes. Just be removed, not run into people. We know. We love our community and the way that everybody's gathered around us, but it's also, like, we do feel like Nashville got real small real fast. Like, everyone knows our story and about Lillian, which we're grateful for. We're so grateful for these prayers. I also fully believe, like, those nine months we got with her and the healing that the Lord provided in that time, that eight months at home was because of all the people crying out to the Lord in prayer. And he was saying yes. He was saying yes. And he was. I mean, he gave us a lot of not yet. Not yets, but. And then there were some no's involved, too. But anyway, it's just been put. My. When we went to Italy, it was so sweet and special just to, like, be away and, like, breathe fresh air and. And one of the things that I felt, like, a huge shift for me is, like, I don't feel fear at all anymore. Like, when I was in that airplane, I'm like, lord, your will be done if it's to protect this plane. Because I always pray when a plane takes off, like, for the Lord's protection and all that stuff. But this time, my prayer is a little different. I was like, lord, if it's in your will to protect this plane, please do. If it's in your will for it to go down, I literally said, let it be quick. I was like, I don't know if that. But, like, I mean it. Like, I would get to be with Lillian in heaven. Yeah. Like. And so there's just, like, the eternal. And I'm not living. Like, I'm not actually jumping out of planes. I'm not actually gonna be living on the edge. I want to honor God and Lillian with my life. Yeah. But this, like, the anxiety, like, I don't. Sometimes I still feel it in my body. Because we're human, right? And, like, our bodies do weird things. But, like, in my heart and in my head, like, I just know, like, heaven's what I'm living for. I'm not living for people on the Internet's opinions. I'm not living for even, like, choose joy, success. I love that we're getting to love on moms. And bless moms, and the Lord is blessing our business. But that's not what I'm living for. Like, that eternal hope that you're talking about, it really does change every decision you make and the way you live your life.

When I feel like when you don't have someone that close to you in heaven, then it's easy to just be like, I'm excited for heaven, but I'm in no rush to get there or to kind of resist it.

It's like, oh, not yet, God. Yeah. I'm like, come, Jesus, come. Like, I was like, where's Cece wine? And when you need her, like, come, Jesus, come. Like, that was my. Such a good song. That was just my. The cry of my heart that whole week with her. And then even since I'm like, jesus, any day is a good day.

Yeah.

Like, any day you want to come back, and we get to be in your glory, and we get to be perfect and healed, because this is a very fallen world, a broken world, and we're imperfect humans, and we're all carrying something. And that was something else we realized through this, like, being parents of a child at Vanderbilt Hospital. And I was like, when we'd leave briefly just to, like, go see Elsa or to go grab a bite to eat, I was like, you'd walk down the streets, like, people don't know what we're going through. Yeah. They have no idea. I'm like, what are other people going through? And, like, being in Italy, like, we're drinking wine and eating pasta and look all cute and, like, it's young, cute married couple. Like, they have no idea what we're going through. Yeah. And so it's helped us be softer and kinder and more patient and more gentle, and we're just like, everyone's carrying something. Yeah. That's.

That's so good. Do you feel like when. I know you had said that Yalls hearts were kind of softened to the option of a liver transplant when she passed, before you got to really go down that path, did you feel like this is God confirming that that wasn't for her? Like, you felt at peace, that.

That. Very much so. And I'm grateful for that because I think I would have felt a lot of guilt otherwise. And I still have my moments when I'm, like, on my knees crying and praying, and I'm like, like, God, why couldn't it have been a little, like, why couldn't we have said yes? And. And we took her to the hospital. The doctors would have probably recommended just staying until the liver arrives. Like, that's what they wanted from birth for her, was her to not leave without a liver. And we felt like it was really important to get to take her home and kiss her and cuddle her and let her be a baby, because we felt just, like, quality over quantity. Like, I'd rather her have quality kisses and cuddles than. Because who knows? Like. And it is. I have to not let myself go there because that wasn't the Lord's will for her. But I'm like, with a liver transplant, she. Could she have had 20 years? And, like, would we have gotten to make up for her rough start of, like, oh, we'll take you and do everything and treat you and spoil you and kiss you and love you and teach you about heaven. But, like, that wasn't God's will. Like, that. That's just not our story. And so I have to just, like, not let myself go there. But I know that she had, I want to say nine glorious months, but really eight, because the first one was in the hospital. But, like, eight precious months being kissed and cuddled and loved and prayed over. And she's prayed over the whole time in the hospital, too, but they just weren't glorious. Like. Like, when we brought her home, the peace we felt. And when we. So when we chose, like, turn everything off, this is not. Like, she is not happy. Like, letting her ammonia go down was making her. Like, that's what she want, her ammonia being high. You're, like, asleep in your coma. You're like, why would you wake me up from this? Like, and so she's probably, like, trying to see heaven, and we're trying to, like, wake her up, and she's like, guys? Yeah. Like, no, I don't know. So anyway, with her, when we were deciding to essentially turn everything off, we were. I at first was like, why not stay at the hospital? They have medicines, they have IVs. Like, we can do more. And Wilson was like, where would she want to be? Like, home. And so we ultimately chose to bring her home again. And then she was in her coma state, either screaming or asleep. There was. And, like, asleep. Like, limp noodle asleep. Like, no waking her up. No, like, pull. You know, no seeing eyeballs at all. And then some small group girls were bringing flowers over and just praying over her. And we're just crying and praying and praying, crying, praying. And then she's sitting or. So I had had her on my chest that whole time. And then they leave, and Wilson, I was. Comes upstairs, and he was like, I'm so glad you got the time with them. I was like, thank you. Like, I know you need a holder and miss her. And he was like, it was good for me to, like, love on Elsa Bean, which is our dog. So he had, like, been laying with her and crying. And we go upstairs and we lay down for a minute, and he has Lillian on his chest. And he's like, I'd do anything for her to blow her bubbles again. She always goes like, her little raspberries or whatever. And I was like, I do anything for her to touch my face again. And we're crying, and we. I was like, okay, well, we need to get up, and we need to get her ready for bed and, like, honor her. And that was kind of like, I always was going to keep her routine. We're home. Like, this is someone. I would, like, wash her little body, even with just a warm wash rag. Get her in fresh pajamas, like, get her ready for bed. And we go to put her in fresh PJs. And she does a little eye rub. And then she, like, does her little, like, signature lovey. She always reaches for lovey. She's like, is there a lovey back here? And I was like, like. Like, wilson, are you saying this? And he's like. And she blows with her dry little lips from all the medicine goes or tries. And then reaches up and touches Wilson's face. And he, like, walks off crying, like, was, like, just. Just undone. And then I'm like, touch Mommy's face. Touch Mommy's face. And so it felt. It did. It felt like confirmation that this is where we were supposed to be. She said, thank you, and I love you. It just. It felt like she was telling us thank you. Yeah. And that she loved us. And she did that for the grandparents. She touched their little faces and got to blow them little bubbles. But, like, then she'd be kind of in a coma when they weren't there. It was like she would kind of. It was wild that last week, and holy and beautiful. And of course, we had our moments of, like, do we take her back hospital? What do we do? And we called the doctors constantly, and we're like, is this. Is this the normal process of it? Yeah, it was. It was a roller coaster. But at the end of the day, we kept just being like, okay, God, you. We are going where the pieces. And, like, this is what she wanted, and this was his will. And I feel like that's one of.

The enemy's biggest strategies, is when you feel or hear something from God or you have an encounter with God and you experience something, and then you look back on it, and you're like, did I hear right? Did I do the right thing? Did I navigate that in the way that he wanted me to? That's his way of coming in and trying to crush you. But it's like, you have to have confidence that you hear from God. You are discerning, you know, like, you knew in that moment what was right. And you have the Holy Spirit and you have the discernment of a mom. Like, you were her mom.

Yeah.

At the end of the day, everything y' all did was only what you felt like was best for her.

For her. Right. And that's what I have to still remind myself. Like, it was. I mean, that this is not. This isn't good. Like, losing, like. Yeah, there's nothing. Right? Right. There's nothing. So, like, this for the rest of our lives. And we're kind of young. Like, we have. I mean, who knows what the Lord has in store for us, but, like, we will always have this piece of us missing and this, like. Like, longing. And. And luckily for us, like, that longing is for heaven. Yeah. And to be reunited with Lillian and get to be in God's glory and get to be with Jesus. Like, how freaking cool. Yeah. And so I'm so grateful. The veil between here and heaven feels so thin, but, Yeah, I just feel like there's really no. With any illness, with any family with terminal illnesses or, you know, there's just no good on this side of heaven. There's no good solution option. I mean, it's all hard. It's all heavy. And no matter how gracefully you're walking through it, or no matter how pretty it looks on the outside or. I feel like we. You know, we try so hard to look put together, like, to walk with grace and dignity, but it's still freaking hard. Yeah.

Also, I was just thinking. I remember a group of us came to the hospital to pray for the first time y' all were in there.

Yeah.

And I remember shortly after that, them saying that y' all had made the decision to go home. And just, you know, we're not all of. Like, there was a big group of women there. We're not all going to be texting me and, like, so what's happening? So it's kind of like you're updating this group text then. Like, it was a trickle effect, but everybody was kind of trying to figure out what it was going to look like. And the fact that y' all went home Thinking that you might have days with her, and then you had nine months or eight months after that.

I.

We've just talked so much about miracles, and obviously this is a pot. Like, her whole story is just so miraculous. Not just. Like I've said since I started this, I want this to be a podcast of miracle stories. And the nine months that you got were miraculous.

Absolutely. The fact that she. The fact that we took her to the hospital that night, it would have been sids. Yeah. Sudden Infant Death Syndrome, for those who don't know. It's happens all the time, unfortunately. And babies pass away in the night and people don't know why, and a lot of people don't have the funds to do an autopsy and find out. And her.

They would have classified.

Yes, she would. It would have just been that night, she was sleepy and cold. We could have just swaddled her up and said, oh, she'll warm up. Or skin to skin. Oh, she'll warm up. And I had a moment of thinking that I'm a nurse. I should be able to fix this. Like, let's just skin to skin. And I even thought, our bodies are made to do this. Our bodies are made to, like, adjust our baby's temperature. And I'm so grateful that my husband also had that discernment to say it's time to go and to get in the car and that we've continued to just. Just be prayerful in how we've made our decisions. Because it. The miracles. I mean, it's been miracles on miracles on miracles. The fact that she even. Yeah. Any of it. Any of it. It's all a miracle. The nine months were a complete miracle. And now I feel like I'm living in the miracle of his grace, the miracle of his nearness, the miracle of, like, Jesus lived and died, like, lived a perfect life and died for us to get to be in heaven. Like, that's why, Lillian, if. If Jesus hadn't come and died, then Lillian sort of be very different because I'd be freaking out right now. Yeah. And I wouldn't have, like, allowed her to. Like, I'm not that I allowed it. It's. Lord. Yeah. Anyway. You know what I mean, though? Like, this would look very different. And so I'm like, the miracle. I feel like I'm still walking in. And I'm so grateful that Jesus died for us to get to be reunited with him, the Father, Son, and Holy Spirit in heaven. Yeah. Like, that is the greatest miracle of all.

Yeah. And anyone would look at you that would look at you and look at your story. I think believers look at you, and they're like, it's miraculous that you have all these fruits of the Spirit in you. And when the world would be telling you, like, oh, that's so hopeless for them. Like, there's no. There's no hope if you don't have the hope of heaven. And so just to be where you are is such a testament to your relationship with God, but also to your point, the miracle of his grace in him. And you, like, the fact that you're standing and using her testimony to bring people to Jesus and to bring hope to people.

Like, yeah, there is. There's so much hope. Like, that's from, like, even hearing you say that. You're like, so many people would think this is hopeless. I'm like, oh, my gosh. It's not like, oh, my gosh, Praise God. That it's not like, praise God for Heaven. And like all, we are so grateful for those nine months of miracles. So I write down gratitudes every single day in the planner that I gave you. And I've now, like, I was praising God for, like, just Lillian's life and birth and miracle and time, like, with her and savoring her and just, like, all her little details and features and everything. And then now I still. Every day, right? Like, nine months with Lillian. Nine months with Lillian, and, like, we will get eternity. This is, like, such a blip in time. And, like, we are but dust. Like, we're going to get to be an eternity forever with him and, like, with our loved ones. And I'm so excited for that day. Yeah, me, too.

Well, y' all have a beautiful story, and I'm really proud of the way that you're using her testimony. And it is going to continue to impact, I mean, millions of people. Like, it already has impacted thousands and thousands and thousands and thousands. The amount of people. I was at Millerine's bachelorette party. I haven't told you this. And we were. It was right before her last ammonia spike.

Yeah.

And, like, literally, I think the weekend before, and she. I was talking to one of the girls at one of Millerine's friends at this bonfire we had, and she was like, how is Lauren and Lillian?

I.

She's a nursing student. She's like, I don't know them, but I've just, like, love following their story. I've been so inspired by their faith. And she's from Lewisburg, Tennessee. She goes to Auburn University.

Yeah.

But I'm like, when I was talking to her it was just another reminder of the people that y' all have touched. And I just think that God blesses obedience and you're being obedient and just wanting to say yes and step into things that he's calling you to. To continue to tell her story and share her legacy. And I'm just so proud.

Thank you. It's wild. Like, so wild. I'm humbled and honored, and I'm grateful that I get. I got to be Lillian's mom, and I get the privilege of telling her story. And my prayer is just that God gets all the glory and we just make heaven crowded. Yeah.

And he will, because you're stewarding it so well.

Oh, thank you. Thank you. Thank you, friend.

Thank you for being here. This is amazing.

Oh, thank you for having me. I'm like, this is my first real, like, podcast opportunity.

Well, you crushed it.

And thank you. Thanks for letting us share her. Share story.

Yeah, of course.

I love you. I love you.