57: Brandi Stafford – Mom of Two Children with CHD, one of whom also has Asperger’s Syndrome.

Brandi shares the story of her two children. 

She talks about when her daughter was first diagnosed with congenital heart disease and her stay in the hospital with her for 6 months after she was born. 

She talks about their time in the hospital, along with the challenges she faced when her daughter came home. 

Brandi also talks about her daughter’s challenges with Asperger’s Syndrome. 

She shares how writing has become one of the most helpful and healing activities for her daughter. 

She also shares her son’s story with congenital heart disease, his two heart surgeries, and his journey. 

She talks about the importance of support from family and friends while her children were in the hospital.

Brandi offers advice to other parents going through similar challenges, suggesting they focus on the success stories of other parents and their children and not the sad, unfortunate stories. 

Finally, she shares how the relationship between her and her husband has grown stronger over the years, and how their children's medical conditions have brought them closer together.
 
Join us for this episode. 

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Podcast Transcript

Chuck: So, today on the podcast, we have Rita and Kelly and I, we're all here today. So, welcome Rita and Kelly. How are the two of you?

Kelly: Good, thank you.

Rita: Fine. Thank you.

Chuck: Well, today we have the privilege of welcoming Brandi Stafford to the podcast. Brandi's has two children with CHD and she's going to be talking to us about her journey and how her children are doing today. And so welcome, Brandi. How are you?

Brandi: I'm good. How are you?

Chuck: We are great. Thanks for taking the time to do this with us.

Brandi: No problem.

Chuck: Let's just jump in, and I'm thinking we're going to let Kelly start.

Kelly: Oh, thanks. So, Brandi, mine are a little jumped around. I was wondering, the first one is, what type of resources have you found, from beginning until now, that have really helped you with the support during the journey. Whether it's a certain group to go to, or references online, just any type of support that you felt would be helpful for other families?

Brandi: The biggest support is family. My family is very supportive through all of this. If I need a question, I felt like I needed someone, they were always there. Also, having friends who have also dealt with that journey has been a great resource. Basically, Facebook is a great resource because you find people that have the same scenario as your child and you go, "Okay, things are gonna be okay." So, having that resource between Facebook and family and friends is the best resource to have.

Kelly: And also, so when you're dealing with just really, really rough times, whether that's in patient or at home, what have you felt to be a huge help for you? I know some people it's taking pottery, it's reading, it's journaling, chocolate. What kind of things have been your go-to to help you get through the really tough times?

Brandi: If I need some time away, basically I go get a pedicure. I know that's weird. I go get a pedicure and I walk away. I swear, I need some time away. If I'm having a lot of problems, the biggest thing is walking away because sometimes you just need a few minutes to recalm yourself and just make sure that you're calm and collected. Because if you're not calm and collected, you're not going to be able to be calm and collected for your baby.

Kelly: And what have you felt have been the most challenging things about this journey and the most rewarding?

Brandi: Most challenging thing is just watching them, watching them fight for their lives and knowing that you can't do anything for them. That they have to do this fight on their own. You are there to support them, hold their hands. Sometimes you can't even hold your baby. But in the long run, you are there to support them but they're doing all the fight by themselves. The most rewarding would be them doing as well as they are right now. AJ is doing so well right now. And when I was first diagnosed, I would never think at two years old he'd be running around, climbing everything, going to Kings Dominion, being that wild child. And the reward is just watching them.

Kelly: Awesome. And so, do you have any suggestions for balancing everything at home? Because I know with a special needs child, you can't plan everything. Sometimes there are ER visits, or longer stays, or lots of monitoring. Especially if you're in a household where it has two full-time parents working two full-time jobs, how do you manage to balance home life, especially with a sibling?

Brandi: The siblings are older, luckily. But managing the home life, my mother-in-law is a great resource. So, every time I need some help or "Hey, ..can you watch the older kids?", she is a phone call away. A few times I thought AJ was doing really critical, she brought the kids down all the way to Charlottesville to make sure I want the kids there. Because you never know what's going to go on or, like you said, the long stays or anything else. So, she's always been willing to travel to help me get the older kids there. I'm always next to AJ when everything's going on. So, between my husband and my mother-in-law, they are a great resource and they are phenomenal, just trying to balance everything. They are my resource.

Kelly: And my last question is, I was wondering if you could sort of touch on when you found out about this diagnosis. I know some people find out when the baby is first born, some when they're pregnant. How you all kind of just dealt with that as a family, but also breaking the news to other family members and friends and how you kind of coped with that? Were you kind of, like, not talk about it and kind of let things go, or just trying to get as much information as possible?

Brandi: So, when AJ was first diagnosed, I was always a high risk pregnancy anyway. They gave me an ultrasound at 14 weeks and they knew something was not right, so they had me come back two weeks later, which was at 16 weeks. And that's when they told me about the heart problem. They talked about termination, and I would never even put that in my mind when it was just so scary. I didn't know what to do because I had already had a child in the hospital, with my older one, with heart surgery and being in the PICU for six months and everything else. I was scared to death. So, when I went to Charlottesville,             Dr. Vergales and Carol were there. I think I had almost every cardiologist there. And they felt like he had the best diagnosis with hypoplastic right heart, and transposition of the great arteries.

And Dr. Vergales actually made it feel like he was going be okay. When we went, we just took me, my mother-in-law, and my husband because I didn't even know what was going on with my baby. And when I came home, we were very open about it with all - the belief he gave me and all the information he gave me. Yes, I did reading, and of course there's a lot of bad things to read on the internet and there's a lot of good things to read on the internet. But sometimes you over read and it was really, really scary. But if anyone asked, I was always very open about what the heart condition was and was always very, "This is what is gonna happen," and I felt that if I let everyone know, I had more support. And everyone I talk to, even at work, I didn't tell everyone but I told my friends and I felt that they gave me the support I needed. And without that support, I don't think I would have done as well when he was born.

Chuck: Let's go back to the beginning of your journey and talk about your first pregnancy. Let's talk about that, the challenges you had with that pregnancy, and let's just start with that one.

Brandi: Okay. So, my first pregnancy, I was actually really young. I was 19. And I found out I was pregnant, like, right on my birthday. And the beginning of October, my water actually broke. I had a good pregnancy. The whole five months, I was doing good, and then my water just broke. I don't know why. To this day, the doctors never knew why my water broke. So, I ended up being admitted to the hospital and they said if I can keep her in until 24 weeks, that it would be a good chance that she would survive. So, they actually gave me steroids for her lungs and they did an ultrasound every single day to make sure she was still doing okay, that she was still breathing. She was very small. And Halloween night, it's funny, during the middle of an earthquake, she was actually born.

She was born at 2:02 in the morning, Halloween of 2001. She was one pound and five ounces. And I think that was the scariest thing ever. They told me that the first 24 hours were the most critical.  That if she doesn't pass away, it's going to be really critical for her to stay alive the first two days or first 24 hours. She fought through that and she was a fighter the whole time. They gave me a 3% chance of her living. They told me she would be blind, she would be deaf, she wouldn't walk, she wouldn't talk. They gave me the worst scenarios with her. And because of those worst scenarios, she fought through them all and she is a miracle. She is almost 16 years old and she is doing phenomenal now.

Chuck: Oh, that's great. How long was she in the hospital?

Brandi: She was in the hospital almost six months. They actually were almost going to send her home at five months but she was not gaining enough weight fast enough. So they actually gave her a G-tube before she came home. And she had to be doing well in the G-tube before they would actually send her home.

Chuck: How long did she have the G-tube in before they took it out?

Brandi: She had the G-tube in… it wasn't long. I would say she had the G-tube about three to four months. She didn't have it in long at all. I think she was gaining weight and all that the first month and they just wanted to keep it in. So I think I stopped using it after a month. And after that, she just had it in to make sure she was gaining weight. And after that, she made it through and she's a fighter.

Chuck: So, let's talk about the six months while she was in the hospital and some of the challenges she experienced and just her journey while she was there. First, how far away was the hospital from your house?

Brandi: Luckily...she was born in California, so she was actually only 30 minutes away. So she was very, very close. Probably not even that. It was probably 20 minutes. So I was there every day. The difference with her and AJ, I wasn't able to stay at the hospital. So, I think I went there every single day for a couple of hours each day. I think my mom was with me 95% of the time. So, I had good support there. So, when she was first born, her eyes were actually still fused shut. If people don't know what that means, fused shut means they were still shut from being in the womb. And she actually didn't open them until almost two weeks later, because, of course, she wasn't supposed to be born yet. She was very tiny. They had put her in heat to make sure she kept warm because, of course, she couldn't keep her heat up.

They gave her all kinds of IVs.  They gave her all kinds of medicines just to make sure to keep her alive. Being one pound is a very hard thing, especially almost 16 years ago. There was another baby that was born at the same time as she was, and they didn't make it. So, you look around at what's going on and it makes your heart sink. And so, when she finally opened her eyes, they actually had to give her laser eye surgery at like two months old just to help her see. At three months old, they realized (something else). When you're born, you have an extra valve in your heart, and that extra valve never shut. And a lot of times they said that happens with preemies.

So, they actually ended up having to send her to the hospital in Los Angeles, which was about an hour away, to do the surgery. So, I wasn't even with her when they did the surgery. They sent her to the hospital and she was gone for that day. They kept me updated as to what was going on. And when she came back, the valve was gone and she did really well. Instead of doing the surgery on the front, they did the surgery on the side, so she has a little scar in the side still. And it's a wound that she's proud of. So they also did the G-tube surgery when she was five months old. She was not gaining enough weight, because she did not learn how to suck a bottle until she was five months old.

Babies are not born with a sucking mechanism, they have to learn it. And she had a really hard time learning that sucking mechanism. And so they were trying to do it with pacifiers, and she wasn't gaining weight because she was burning so much energy trying to suck on the bottle. So, with the G-tube, it basically ran all night and she was able to drink as best she could. And if she didn't drink a lot, I just put the rest through the G-tube. She came home probably with like eight medications, between the heart and IVs that she had. There were a lot of medications she came home with. And she came home with oxygen. I mean, she was on the ventilator for almost three months.

Chuck: With her being on the ventilator that long, did she have any oral aversion or anything?

Brandi: Well, with her being on the ventilator that long, it actually messed with her vision. So, she actually has really, really thick glasses because of being on the ventilator so long. Because I found out if you are on oxygen for a long time, it actually messes with your vision.

Chuck: I did not know that. That's my fun fact for today. How long was she? At 1.1 pound baby, how long was she?

Brandi: She was 12 inches long.

Chuck: Twelve inches.

Brandi: It's the size of a ruler, yeah. Like a little kid's ruler. I was like, "Wow, it's so small." She looked like a barbie doll. She didn't fit in the barbie doll clothes, but she looked like a barbie doll. She was really red and she was really thin, and it was just hard to see her like that. But how she's come so far.  You would never think that that little girl is the same little girl.

Chuck: So, your stress going through this, talk about it. You touched on it some, but just seeing your child in the hospital for six months and the challenges that presented.

Brandi: There was a lot of stress there. I had to keep busy. So, I actually asked to go back for more maternity leave early because I needed to keep my mind off what was going on. There was a lot of stressors there. I was 19 years old, trying to keep my head around all of this, what's going on. I was there with her every single day. My mom was my support, my backbone through this whole thing. She told me, "If you need to walk away a few minutes, you can. And you need to be able to," because I was raised with a disabled brother.  So she's seen all of everything I had been going through. So, I went back to work to keep me busy when I wasn't with her. Like, that year, Thanksgiving, she's like, "You need to give her a few days and you need to go see your grandparents."

And I'm like, "I don't want to leave." She made me leave and I was gone for two days, but I was a phone call away. And being able to step away and be with family, you need to be able to be there. You need to be able to have that support no matter where that support is at. Like I said, my mom was my backbone. She made sure my sanity was there. And sometimes you don't know what to do. You just want to cry. And the stress that was there was hard and frustrating because you couldn't do anything for her. All you can do was watch her, and be there, and hold her hand. Because at that time, I didn't even get to hold her until when she was two months old. Back then, they didn't let you hold the micro preemies at that small of age.

So, she was almost three pounds before I even got to hold her, and that was my Christmas present that year. So, that was the best thing ever. That was a little stress reliever right there because I finally got to hold my baby. With the stress, you have to deal with it, you have to cope with it. Just knowing that you have a great support system is the biggest thing, knowing family is there. And I think that's going to be the biggest support system.

Chuck: So, when you got home with her, talk about that. How big was she when she came home?

Brandi: She was a little over five pounds. Because back then they would not let you go home with a baby until they would hit five pounds, because that's where the car seats started at. It was five pounds. So, she came home at five pounds. She had oxygen, she had a G-tube. So, I had a two-door T-bird, and trying to get her in this car was almost impossible. She came home with like eight medications. I had a chart of what time she had to get each medication, because they were all different times. We did a little bit of milk or formula in a bottle, and usually she drank it. Sometimes you had to put the syringe in her mouth and hopefully she would drink it. A week after she came home, I actually traded in my car to get a four-door car because it was impossible to put all these things in the car.

It was really, really hard, trying to do this with the oxygen and the G-tube. Back then you didn't have the little bags that they carry around now. I had a little tiny, like, pole. And then I also had the oxygen tank which was a pretty good size. So try to put this in the stroller and everything else! She went to the doctors probably every couple of days because they wanted to see how she was doing. She ended up off the oxygen probably I'd say two weeks after she came home. So, that was a big stress reliever because that's a lot, between carrying the oxygen with you everywhere. I think she went down to only at night for like a week. But other than that, she came off the oxygen really soon. And then the G-tube, it was about a month.

She actually pulled it out two weeks after she came home. So, me and my mom went back to the emergency room because she pulled it out so much. It's supposed to go right back in and it didn't go right back in. So they said if that ever happens, I had to go to the emergency room. So, she kept me on my toes, but I wouldn't want it any other way.

Chuck: So, as she progressed and grew, did any of this affect her childhood?

Brandi: Besides the vision problem, she actually has high functioning Asperger's. So, with Asperger’s basically she can't look at people in the eye. It was a very long time before she could mix textures with food. So she was three and four years old and, unlike people have Hamburger Helper and spaghetti, she could not mix those textures. It was too much for her. She cannot finger paint at all. She still to this day cannot finger paint because of the texture to it. She's affected by texture. And then with Asperger's they focalize on one thing. She's really into history, so she will focalize into history, do all the research. She'll watch shows all day long about it. But that's where her attention will stay, with that one thing.

With Asperger's, they usually have one strong focus, like, especially in school, and that is her focus. She's horrible at math, never has been good in math. We've actually worked with her. For the longest time, she cannot look at us in the eyes. And that is a feature of Asperger's, they cannot look at another person straight in the eyes. I know she bypasses our eyes but she does really good with that because she has to learn how to deal with society. When she was little, for her to vent because she got frustrated, she would throw her glasses. And I would say, "I'm not the one who can't see. You're the one who can't see." So, of course, after a while, she would stop doing that.

There is always with Asperger's an anger issue. They don't know how to express themselves. So when she was probably five or six years old, she would hit her head. And I'm like, "You cannot hit your head. That is not good." So, she stopped doing that. I know when she was little, her and my nephew always got into it. She felt like she had to pinch or hit something. And usually it was, unfortunately, my nephew. She doesn't do that anymore. She has actually turned to writing now. So, for her to vent and for her to get all her frustrations out, she writes. She is actually trying to become an author now, at almost 16 years old.

Rita: I think that's fabulous. What started her on the writing?

Brandi: I think what started her on the writing was she's a reader. She's a big, avid reader and that's all she does all day long. She reads Harry Potter. She found these books called "The Warriors." When she was really little, it was Junie B. Jones. And I think what started her on the writing was the reading. Because when she was in first and second grade, she had a great teacher, Mrs. Andersen, and she really helped her learn to read and learn how to make sure she understood the concept of reading. And to this day, she actually reads but she cannot read silently. She has to read out loud for her to understand the concept. And so when she's writing, it's just her venting, her reading into her stories. And everything she's learned to read she has created into stories,I think, from her own imagination because of how she's read so much. I think the reading and the writing just go hand in hand with her.

Rita: That's wonderful. Quite a testimony. It's wonderful.

Brandi: It is.

Chuck: So, let's chat about your son and when he came along. Talk about that journey and your pregnancy with him, and how that all started.

Brandi: My two older kids, and then we decided to go ahead and have a third. Once I got pregnant with him, I always knew I was high risk. Both the older two kids were born early. My son was born at 36 weeks, and of course Katie being born at 24 weeks. So, you need to go to a high risk doctor, do the ultrasound, and all that. My brother has spina bifida too. So between that and Katie, they always are really watching me. So, at that 14 weeks scan, like I had said earlier, they had found something but they didn't know what it was. So, at 16 weeks, they asked me to come back and that's when they found out he had a heart problem. Of course, the first thing they come up with is termination, and that was never an option because I am going to have this little boy survive no matter what.

The next day, we were in Charlottesville and that's when Dr. Vergales, who is the pediatric cardiologist, told me what he had - which was hypoplastic right heart, tricuspid atresia as part of it, and then transposition of the great arteries. So, what all that means is that hypoplastic right heart is his right heart does not function. His left side is doing all the function for him. And then transposition of the great arteries are basically the two arteries that go to the heart, they were reversed. Luckily, between Dr. Vergales and the nurse practitioner, Carol, if you needed anything, you needed phone calls, you needed anything at all, they were a phone call away. And for the pregnancy, besides that, I was at Charlottesville once a month and then I was at my doctor, the opposite. So, every two weeks I saw a doctor, to make sure that he was doing okay, that he was growing okay. Because I've always had preemies, they gave me injections once a week from 18 weeks to 36 weeks to make sure that I basically didn't have him early. The plan was to always deliver him in Charlottesville. Basically, they were going to induce me at the end of May. But I never made it to the end of May actually. I never make it. So, in the 36th week, when they stopped the injections, I actually saw the doctor that day. And they told me he was around seven pounds and that he was still on plan. "Come back next week. You're planned to be induced at the end of the month in Charlottesville." So, May 12th is actually when I went into labor with him.

I went to Spotsylvania Regional and they basically told me I was not in labor, even though I was having contractions and everything else. So, my husband had a doctor's appointment that morning. I told him to go ahead and go to the doctor's appointment. I called out of work. Then I just started feeling really sick and I'm like, "Something's not right. I need to go to the hospital." So, he actually drove me all the way from Spotsylvania to Charlottesville, which is about an hour and a half away, so I can see if I'm actually in labor.  Because with the local hospitals, I did not feel comfortable with having him there. So, we went to Charlottesville and they made me feel welcomed. They made me walk around and everything else.

I dilated and everything, and they're like, "Okay, well, you're having the baby today." I had him that night and he was not seven pounds, like they had told me five days before. I had him at two days before 37 weeks. I had him at eight pounds, 15 ounces. They said he was the biggest little boy in the NICU, and he couldn't hold on his oxygen at all. They ended up putting him on oxygen right away before surgery. He looked good, they let me hold him for a few minutes. Once I had him, I just knew at that point they had to take him away. It was hard because out of three kids, I've never been able to keep the baby in the room except for one. So, it's like it's hard when they whisk him away to the NICU because all you want to do is spend time with him. And unfortunately, I didn't get to do that.

Chuck: How long was it before they did his first heart surgery?

Brandi: They did his first heart surgery six days later. So, on May 18th was his Norwood. So, basically, that's when they put the shunt in, and he came up right away. The night before, they actually put him on the ventilator. They said they usually don't do that but his stats went all the way down to the teens. It was scary. I have never felt so scared in my life. I was holding my son and I could lose him, and I didn't know what to do. But luckily, they did the Norwood and his stats, his pulse ox. went up into the 70s and 80s and he kept them on his own. And he actually came home about two and a half weeks later. He was only in the hospital 22 days from the day he was born. So, it was a miracle. He's a fighter.

Chuck: That's a great thing. So, once he was home, talk about that and just your experience in how he did. You also have another child that you're parenting too, two other children actually, right? Talk about that and how that challenged you and how you handled all that.

Brandi: Okay. Oh, I handled it. So, I came home on June 3rd with him. And luckily, my husband and my mother-in-law came up a few times to bring my older kids so they can meet him and so they can hold him. And when I brought him home, he only had the NG tube, which is basically a tube that goes into your stomach so you can eat. He was gaining weight but he was still having trouble with drinking a lot of formula. So, I came home. Both my older kids took to him right away. They both loved him.  All they wanted to do was hold him. So when he came home, he had to see a doctor once a week until the second surgery, which was September 15th. So, one week he would see his pediatrician and the other week he would see the cardiologist.

Because between the first surgery and the second surgery, it's actually the most critical because he basically has no immune system. And if he gets sick that could be a lot. Apparently, 50% of the children end up back in the hospital. During all that, I still kind of kept him...or allowed him to be like a normal kid. So, I would take him out with me but I would not let anyone touch him. He was always by my side. The older two kids always made sure no one else touched him. Unless you washed your hands and if you're a friend, I had no problem with that. You're touching him, you're holding him. But if I didn't know you or you're one who like, you know, how some people like to poke babies? Yeah, no, you can't touch my kid.

So, I always had him next to me. We went to the beach, we still did stuff. I wasn't going to Hermit Crab him and stay inside the house. I felt that for him to have a good immune system, that he needs to get out in the public and he needs to get out, and I needed to be able to do things with the older kids. I was not going to let the older kids stay home all summer. They were home with me all summer for summer vacation. Besides being around town, we didn't go anywhere out of state or anything else. And they backed me up 100%. So every time I needed something, "Hey, can you go get me a diaper real fast?" they would get it for me. Anything I needed, they were there.

I think the first three weeks, I slept downstairs because he was still on the NG tube and they wanted him to be eating every three hours. So, me doing the NG tube, trying not to be noisy for everyone else, I stayed downstairs with him and we did the NG tube every three hours in the middle of the night. I finally talked to the cardiologist out of letting me do that. I'm like, "He is sleeping through the night. Let me be." So, at about seven weeks old, he was actually sleeping through the night. He slept between 11 and 6, and he slept all the way through. I never had any problems. He'd wake up, we do the NG tube, and he was good. He actually had the NG tube out probably four or five weeks after he came home.

He actually was doing the bottle really well, and he was so strong during all of this. The older two kids, like I said, they watched him for me while I went and took a shower or something. They were always right there. They did not mind helping me. Because I was on maternity leave, so I was home with him. My husband was working and my mother-in-law would help as needed. But I had a good support system through first surgery and the second surgery.

Chuck: For that second surgery, how long was he in the hospital?

Brandi: Four days.

Chuck: Wow, that's awesome.

Brandi: Yeah.

Chuck: I think that's a record from what I've ever heard.

Brandi: Actually, it was funny because he actually had his surgery. They actually came up without him on the ventilator and he was bleeding too much. So, when he was bleeding too much, I'm like, "We have to take him back down." Because I guess when they shut him up, he was still doing extra bleeding, so they needed to suck some of that blood out, which is what they did. So, he ended up coming back. And I don't know what he did, but he was like, "Okay, I got this." They stopped the bleeding. They took the ventilator out the next day. They ended up moving him two days later to what we call the resort, which is the north - basically the better wing because you get food and you get drinks and all of that over there. And then he came home two days later. It was funny because his little buddy, Finn, was next door to him the whole time. Actually, Finn went in the hospital the same day and he left the same day. They both left the same day.

Chuck: The third surgery? Has he had that yet?

Brandi: No, he has not. So, basically, what they're going to do is in the winter they are going to do an MRI. And that MRI is going to tell them if they're going to do the surgery, the Fontan, next summer. Or if they're going to do a little bit different surgery, which I'm still not understanding that whole thing, into the following summer. So, it just depends on what that MRI tells them. I don't understand the whole thing about this other surgery, but I'm hoping he will eventually explain it better.

Chuck: So, how is he now?

Brandi: He's doing phenomenal. He's downstairs running around. We're actually trying to potty train him right now. He's actually gone pee-pee in the potty four times yesterday.

Rita: Awesome.

Brandi: Yeah.

Chuck: How old is he now?

Brandi: He's a little over two now. He was born May 12th, so he's two years two months right now.

Chuck: Okay. That's super. It's nice to hear somebody that's had such great success and been through this journey twice and been successful.

Brandi: I think that's what helped, was me being through the journey twice. I think that's what really was better for me. It's funny because Carol, the nurse practitioner, she's like, "They've got this." Because I always knew the answer and I always knew what was going on. I'm like, "Okay, what's going on?" Like, I understood what they were talking about because I had already been through it once. I think that was a good help.

Chuck: So, for other parents going through this, what advice would you give them?

Brandi: Don't read everything on the internet. The biggest thing is don't look at the bad stories, look at the success stories. Just because someone had something go wrong look at the success stories because there are stories of success. There are stories of kids doing phenomenal. Give your baby that chance and fight for them no matter what.

Rita: That's great advice. I also think your ongoing story of the importance of family support and friend support is critical.

Brandi: Yeah, it is.

Rita: And so, you mentioned your husband. What impact has all of this had on the two of you?

Brandi: We're stronger than ever. We've been through everything together. We've been married almost 14 years now, and he is my rock. If I need anything… (like) the night that AJ got put on the ventilator, the night before his surgery. He was on the way home to switch cars and he took me back because he knew I wanted to go back and that I couldn't leave AJ. So, through all of this, he's my rock.

Rita: That's wonderful.

Chuck: So, just to follow up with what Rita said on that. I know this takes a toll on a lot of marriages, so what advice would you give to people who are experiencing this in regards to their marriage?

Brandi: Be there for each other, support each other. When she gets frustrated, because usually that's what it is, that she gets frustrated, let her vent, let her cry, be that shoulder to cry on. Because make sure she's stepping away. So, don't have her sleep in the hospital. Luckily, I had the Ronald McDonald House. So, every night he's like, "You need to get some sleep. Go get some sleep." Go, listen to your husband, listen to your wife, listen to each other, and be there for each other.

Chuck: That's great advice.

Rita: And how about the siblings and fostering the sibling relationship? Has that been a challenge?

Brandi: Now that he's crawling and getting into things, they get frustrated with him because he wants to spend time with the older brother, especially his brother. Like, he'll mess with his sister. He actually likes to mess with people. He's a jokester, and sometimes the brother, Matthew, gets so frustrated because he's like, "I just want five minutes," and all he wants to do is hang out with him. But they, all three love each other and they would do anything for each other.

Rita: Great.

Chuck: I think that's great. So, thank you for your time and being on the podcast. It is awesome hearing the success that you had with this and pretty much every aspect of it, too. I think it's a great story, so I appreciate your time in being on the podcast with us today, and keep up all your great work.

Brandi: Thank you so much.

 

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