Twins with TTTS, Birth at 29 Weeks, 56 Days in NICU, and Raising Preemies with James Bethe – Podcast 120

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Episode 120 of the Dad’s Guide to Twins Podcast Show Notes

In this episode we continue our Father of Twins Interview Series with twin dad James Bethe. Listen as we discuss his twin journey, including:

• Shocking news of expecting twins with TTTS (Twin to Twin Transfusion Syndrome)
• Dealing with hospital bed rest
• When their twins were born super early (at 29 weeks)
• C-section birth experience with preemie twins
• Daily routine when twins were in the NICU
• Dealing with a two month long NICU stay
• Transitioning from NICU to home
• Developmental issues they’ve seen in their preemie twins
• Finding a babysitter for twins

Mentioned on the Show

James’ website JRB Creative
James’ Instagram

Transcript

Joe: Hi there and welcome to the “Dad’s Guide to Twins” podcast, episode number 120. This is Joe Rawlinson. As always, you can find me on the web at twindadpodcast.com where you’ll find much more information about having and raising twins, along with the show notes and transcript for this and all previous podcast episodes.

Today’s show is brought to you by my first book for fathers of twins, “Dad’s Guide to Twins: How to Survive the Twin Pregnancy and Prepare for Your Twins“, which is perfect if you are currently expecting your twins. You can read more about that book at twindadbook.com. Once again, that’s twindadbook.com.

Today we are continuing our father of twins’ interview series with fellow father of twins, James Bethe. James Bethe is a father of identical of identical twin boys and he shares an amazing story of their journey from finding out they were having twins, to a surprise, very early delivery of their boys, a couple months in the NICU, and how they made that transition from the hospital to life with infants at home. I’m sure you’re going to find a lot of value out of his story and how they made it through some harrowing surprises with twin-to-twin transfusion syndrome and how they came out of this better as a couple and as a family. Let’s jump right in to the interview with James. Today I’d like to welcome to the show James Bethe.

James: Hello, how are you doing?

Joe: Good. Welcome. I’m glad to share your story with fellow fathers of twins today.

James: Glad to be here and talk a fellow twin dad.

Joe: That’s right. We are in an elite fraternity.

James: Yeah. We head nod when we see each other.

Joe: That’s right. That’s right. Well why don’t you give listeners a quick snapshot of your family right now and then we’ll rewind the clock to back when you found out you were having twins.

James: Sure. Basically, my wife and I, we’ve been together for fifteen years. Her name is Michelle. About ten years in, we got married. We were high school sweethearts. She was 17 and I was 18, and we got married about ten years ago and– I’m sorry, about five years ago. From there, we decided to have kids about ten months ago. From there we went on the journey of finding out that we had twins. When my wife found out that she was pregnant, we were ecstatic because it’s been so many years together. Eight weeks in when there’s the first ultrasound, we found out that we were having twins and it was just an utter shock. It was just a great feeling. I describe it as hitting the lottery because there’s nothing that money can buy when it comes to finding out that you got lucky to be part of that group of being a twin dad or a twin mom and being able to experience what it’s like to have twins. From there, once we found out, it was basically change of plans. It’s going to be chaos, but a positive chaos. It was really, really smooth sailing in the beginning and everything was on course, everything was healthy, and then about the 28-week mark, we found out that we were having some troubles. My wife, when she went for her 28-week ultrasound, they found out that she was having contractions, which was way too early for somebody to be having contractions. We then realized, ten hours later after going from the ultrasound visit to going to the hospital to look further into it, that we found out that there was what is called a twin-to-twin transfusion syndrome. For those that don’t know what a twin-to-twin transfusion syndrome is, it’s when one twin takes on too many nutrients and takes nutrients from the other twin. Basically, one twin gets super big and heart speeds up really fast and it puts a lot of stress on the heart, and the other twin can get small and the heartbeat will not be as fast. Both are kind of going in the wrong direction which is super scary.

Joe: That was the first you heard of that, that far in the pregnancy?

James: Yeah. Yeah. It was really smooth sailing. The visits were just like a dream where everything’s good, they’re healthy. You’re on your way. They look beautiful. And then I’m like, “Wow, this is great. Everything’s running smooth. I’m going to have a beautiful family.” Through the process we found out we were having identical twin boys so I was just super excited. And then it hit us like a brick, basically, and came out of nowhere. I never even heard of it. It was really to the point where I didn’t really realize how common it is for twins to be born early. I thought maybe three weeks early, something like that. I wasn’t really worried about that. But when it was at the 20-week mark, it was super scary. It was very risky. They really couldn’t give us any answers, and that made it even worse. It was just a real lonely kind of feeling of, “Alright, we got to basically tough this one out.” Basically the whole game plan from there was for my wife to stay in the hospital for as long as possible and try to tough this out and get it to a point where they can keep developing and getting to a certain weight and a certain development.

Joe: She went straight from the ultrasound to hospital bed rest, just like that?

James: Yeah. Just like that and in a matter of an hour. I remember getting the text from her. Basically the text said, “I’m having contractions.” I didn’t even know how to react to that. We were a week away from her baby shower and that was on my mind. That was my stress at the time was preparing for that and all of the sudden I hear that she’s having contractions. I didn’t even know how to react to it. It was just like, wow, is this possible? Everything was going so great and smooth and all the sudden there’s contractions. I start to search things online and then I see this whole community of twin parents that are going through the whole early birth thing. Then it really hit me, “Wow, this is way more common than I thought.”

Joe: Yeah, the average on twins is about 36 weeks, but when you have averages, that’s right in the middle, right? So you have twins born very early like you’re describing and after that as well. How long was she on the bed rest at the hospital before something else happened?

James: The game plan was to keep her in the hospital for around 2 months if possible. That’s best-case scenario. She was able to stay there for 8 days until we had to have a C-section. It was basically 8 days full of 2 ultrasounds a day, constantly monitoring the heart, and just making sure that there’s a pulse and trying to find the pulse and basically just seeing where they’re at. Then she started to fill up with fluid from the sac, and it was putting a lot of stress on the hearts of the babies. In those 8 days, she had to get 2 amnio reductions. They basically took about 2 to 3 liters of fluid out of where the babies are to reduce that stress, which was super stressful. Because when they’re doing it, it’s basically a needle and you could see one of the twins grasping for the needle. It’s just super scary. It was just a crazy experience. Then it got the point where, when they did– The first amnio reduction they did, it was great. It really looked good in the ultrasound afterwards and it was really a sign of encouragement. Okay, we could tough these next two months out, whatever it takes. Who cares if we got to be in the hospital. We’re going to have twins. But then around the 8-day mark, we had to do another one because she was filling up so fast with fluid. It was getting a little concerning. The reaction to the second amnio reduction wasn’t as positive as it was the first. They started to notice some issues with the heart rate for the twin that was taking most of the nutrients, and it was starting to become a little dicey. From there they made a decision, “Today, we’re going to do the C-section, and we’re going to go the NICU route.” That’s when they were born at 29 weeks. She was able to tough it out for 8 days. Eight days is very important. They say usually each day is about 3 days in the NICU, so she saved almost a month of being in the NICU and she got them to a point where– It was a very critical week for development and they were able to be born. They were born via C-section and my littler one, Austin, was born at 2.3 ounces and the bigger one, Zachary, he was born at 2.11 ounces.

Joe: So bigger, but not too much bigger.

James: Yeah, not too much bigger.

Joe: Tell us a little bit about that transition from you were having this amnio reduction procedure and then you need to go in for a C-section. How much time was between there and were they given–sometimes they give steroid shots to help the babies get ready–or was it just straight into the OR for the emergency C-section?

James: There was about 8 hours in between time. There were steroid shots and there was also some type of procedure that they do where there’s basically the air that goes to the brain– It’s called magnesium, so they give a shot of magnesium. That takes about 3 to 4 hours to do its work and it just helps for any future setbacks or possible disabilities. It’s kind of like a pre– a trial of making sure that certain things don’t happen. Then it was game time and it was time to do the C-section. We didn’t know what we were about to see. We didn’t really know how much they weighed or how big they were going to be. I didn’t know what to expect, what my kids were going to look like. I just knew that, just brace yourself because anything could happen. It turns out, they weren’t that small as I thought. I was expecting to see a kid the size of my hand. I just didn’t know. You think of the NICU and you just think of it as a scary place. It’s not as scary as you think. It’s actually a really great place and they do some wonderful things there. They work some miracles and they definitely did for us. But it was definitely an experience. It was something I’ll never forget. It really makes you, I feel like a better parent when you go through that type of experience. You really appreciate what you got. After we got these twins and they survived through this, it just really makes you a stronger person.

Joe: Absolutely. What was your first interaction with your boys? Was it in the delivery room or was it later?

James: It was a quick peek-a-boo, is what I like to call it. We weren’t allowed to hold them right away because there was a lot of things that they wanted to get to right away. They wanted to get the procedures going and making sure that they’re breathing and check all the types of potential problems that they might be having. They just walked by us and, “This is Austin. This is Zachary.” That was kind of it really for about an hour or two, then I was able to go up to the NICU once they were more ready. I was able to take a look at them and touch their hand. I was scared to death at the time because first of all, it was just being a dad. I didn’t know I was going to be a dad that month, more or less that day. It was super scary because when they’re around 2 to 3 pounds, I didn’t know how fragile, really what you could do and stuff like that. Eventually I got used to it. They were there for 56 days. I got to see them go through a lot of stuff. They went through collapsed lungs, blood transfusions, they had PICC lines, they had feeding tubes, oxygen. I got to see them go through all that type of stuff and really see them fight. After about a week or two, I was able to do the skin-to-skin, is what they call it, where you can put them on your chest and supposedly it’s really good for having them grow and progress. It was just building confidence over those 56 days. About two weeks in, you got the hang of it and you kind of felt like a pro, and you were able to enjoy it more and get more comfortable with them and hold them. Eventually that led to teaching them how to bottle feed and teaching them certain things. Really, one thing that the NICU did that I didn’t even expect is it really trained you to be a dad so when you came home, it was kind of like, “Oh, I’ll just take on their schedule and go from there.” We didn’t even realize, but we were getting free training through the process, so we were building our confidence. We almost became nurses by the time the 56 days in the NICU was over. We become little pros. Still scared to death, but it really helped us transition once they got home.

Joe: What was your typical day like when they were in the NICU? How long were you there? How were you able to interact with them on an average day?

James: My wife wasn’t working at the time. She was in super mom mode and stayed there all day. I would work until about 5 o’clock and–there’s a certain timeline that you can’t go in there–I would go in around 7 at night until around 9:30 at night and do the skin-to-skin or do the bottle feeding. That just became our routine. It was, after work, get in Daddy mode and drive down to the hospital and go see my boys. There was always a certain time when I would go there and they would be weighed. When you see them, one of them was 2.3 pounds, every little ounce mattered it felt like. Any time you saw them gain weight, that was a big deal because it was just another step of them going home. And if there was a day they lost weight, it was so defeating, because it just felt like, “Oh, they’re never going to get out of there. These kids are never going to get out of this hospital.” It starts to eat at you, to watch your kids gain weight slowly. It was just like watching grass grow at a certain point, but eventually they were rocking and rolling and they were gaining weight really fast and grasping the bottle. They were starting to really progress. The last half became a little bit easier. It was, let’s start prepping to bring these boys home. It was a whole other strategy at that point.

Joe: The weight gain is an important factor as well as being able to feed. What are some of the big milestones that they had to accomplish before they could leave the NICU?

James: It was being able to breathe on their own. That was a big deal. They were on the oxygen masks–I think they call them the bipap and the cpap. That was a big accomplishment once they were eventually able to go on to room air. There was two types of NICU rooms. One of them was the more intensive care where there was maybe four babies to one nurse– I’m sorry, no. There was 2 babies to one nurse. Then the other room was four babies to one nurse, when they were easier to take care of. The call it a graduation. After they were able to start to grasp the weight gain and the bottle feeding and start to be able to take on room air without any assistance, then they would graduate to the other room, which was basically, you know they’re only there maybe more than 2 weeks, sometimes way shorter, maybe 7 days. That was kind of, alright, get your stuff together mom and dad. They’re coming home soon. That was a big sign that it’s almost time to come home.

Joe: Nice. Tell us a little bit about that transition from the NICU to when you brought your boys home. What was that like and how were the logistics there?

James: It was definitely a grind. All we knew as parents were these two babies that were in the hospital. It’s sad to say but it was like bringing a hospital patient home in a way where we didn’t know them. We only knew them as kids that had oxygen masks and needed assistance. It was really scary because we knew in the back of our minds as quickly as they could come home is as quickly as they can end up back in the NICU. That was always in our mind and really scared us. It was hard to really relax and enjoy in the beginning, because we were just so petrified because all we knew was them in incubators and with tubes hooked up to them and stuff like that. It was so scarring and it brought it into our house. But eventually, they gained some more weight. We got more comfortable as parents taking on the NICU routine, the feeding schedule. That helped so much. We started to get our routine down on who wakes up to do the feedings. We were just on-the-job training. Eventually they got to a point where it wasn’t as scary and it was, alright, these boys are staying home. We built up and ramped up our confidence and got to the point where it was almost the past and we were able to move on. It was more or less the usual battling the sleep and all that as a parent eventually. The whole NICU vibe eventually went away.

Joe: How long did it take for that mental shift?

James: I’d say about 2 to 3 weeks, maybe a little bit longer for my wife. Still to this day, they’re ten months now and we still are scarred from that. We’ll still think back. There are little setbacks and little things that happen because they were born 2 months early. Just little things that we’re still affected by it, but we know that these boys are healthy and they’re fine. It’s just you got to deal with the little preemie issues that you may have, but I’ll take that any day compared to where they were at. I’d say 2 to 3 weeks.

Joe: Okay. What are some of those preemie issues that you’re talking about?

James: The motor skills. Picking up toys could be more of a challenge at ten months. Holding the bottle, maybe crawling, even some babbling or talking. Those are the signs of delays that we’ve been experiencing. I wouldn’t say that they’re a super issue for us but they’re definitely there. To compare them at ten months to a ten-month-old baby that was born through the full pregnancy, it just really can’t be done. I look at them as 8 months. They call that 8 months corrected. Certain things I feel like they’re picking up on right on pace and certain things I’m like, “Alright. I see the delay.” It’s rightfully so. Just the little things like that but in time they’ll progress through it and they’ll be on their way.

Joe: Did you have any family or friends come and stay with you to help with the newborns?

James: We had my parents and my wife’s parents. They helped us out with babysitting every once in a while. But through the process, my wife was able to take 8 months off so we prepared for that so she was in super mom mode was able to really take that on. When she went back to work, I took 12 weeks off, which I’m going right back to work now and transitioning to a babysitter. Me and my wife did the whole teamwork approach and paced our time off to a way that’s in an advantage for us so one of us was always out to get them along to a certain point where it’s a little bit easier to hand them off to a babysitter.

Joe: Sure. For the babysitter, is it going to be someone in home or a child care facility? How’s that going to work for you?

James: We have a babysitter, a family friend, that’s helping us out. Child care is just too crazy for twins and I would say even for one. It’s higher than our mortgage. We would love to use a child care, but sometimes it just doesn’t make financial sense for us. I’d almost rather try to work from home or transition to that. We’re still figuring it out. Sometimes we’re in reaction mode where we’re just taking it month by month and we’ve been making these tweaks. But now that our time that we’re allotted at being off has run out, changes need to be made. I’ve tried to start my own business so I could be more self-sufficient with being there for them and being able to work while they’re sleeping or napping. I’ll work on my company and make money that way. That’s something in the works, but we’re figuring it out as we go. As soon as we think we’ve figured it out, we’ve got to figure it out again. We just keep adjusting. It’s a positive chaos, as I like to say.

Joe: Nice. Positive chaos. As parents of twins, you think you’ve got it figured out and then they change or they have some developmental milestone and the routine gets shaken up again. I think the attitude you have of being flexible and adapting will serve you very well.

James: Yeah, definitely.

Joe: With all the challenges you had with early delivery and time in the NICU, how have you been able to maintain your relationship with your spouse and keep that strong throughout all these months?

James: Me and my wife, we had a strong relationship before this and I feel like we’ve gotten even stronger. The one thing that having kids and twins or multiples, you have to step your relationship up. It’s a whole other challenge in your relationship. You got to take that on and you’ve got to be a team. As a twin dad, you got to step up and you got to help out your wife. You can’t let her take it on alone. It’s too much of a challenge. My whole thing is to be as hands-on as possible, be as helpful as possible, be there for her mentally when she needs someone to talk to. Also figure out when we could have date night. That’s something we’re working on is just really to have the time to be able to do that type of stuff. We’re figuring that out as we go. I feel like we’ve gotten stronger because we’ve had twins. We’re so proud of it and it’s like being in a club. We’re still so starstruck by it, just that high from it, it just enhances our relationship.

Joe: That’s true. When you go through a challenge like this together and you rely on each other–like you mentioned being a team, working through this together–it really does draw you closer together and strengthen you because you’re like, “If we can overcome this challenge, we can do anything together as a team.” It’s a very empowering feeling. James, as we wrap up today, what’s one parting piece of guidance you want to give your fellow fathers of twins and what’s the best way to get a hold of you or connect with you?

James: Sure. I would say to twin dads out there, definitely support your wife and don’t ignore any types of discomfort that she may be talking about with her pregnancy. If something doesn’t feel right, be there for her and help her trust her gut. Don’t ignore the signs because having twins in general is a little bit more risky of a pregnancy. Make sure you’re there to support her. Support her with, “Don’t wait until your ultrasound or your doctor’s appointment. Let’s go to the doctor tomorrow. Let’s just make sure.” Because you never know. I’m not saying that you’re going to get the twin-to-twin transfusion, but just be careful. Trust your gut and be a supportive husband and be there for your wife. I would definitely say that.

Joe: That’s great, sound advice. Very good. So James, how can folks get a hold of you if they want to connect?

James: They could visit my website and support a fellow twin dad. I do social media marketing services at jrbcreative.com. You could follow me on Instagram at jrb_creative. I’d be glad to hear any comments. If anyone has any questions about twin-to-twin transfusion syndrome, I’d be glad to talk to anybody and help them out in a time of need or just with any type of advice.

Joe: Well thank you James. I’ll link up to those in the show notes over at twindadpodcast.com. Thanks again for joining us and sharing your story James.

James: Thanks. Have a great day.

Joe: I hope you enjoyed that interview with James Bethe. What an amazing story that he shared, overcoming the big surprise of twin-to-twin transfusion syndrome to welcoming those boys very early, shepherding them through the NICU, and then bringing them home to be with their family. I will link up to the website and social contacts that James mentioned at twindadpodcast.com where you’ll find the complete show notes for this episode, as well as a transcript.

Once again, this episode was brought to you by Dad’s Guide to Twins: How to Survive the Twin Pregnancy and Prepare for Your Twins. That is my first book for fathers of twins. You can read more about that book at twindadbook.com. Thank you so much for joining me today and I’ll see you next time.

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