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Stephanie interviews Emily Hughes, a mama who navigated a full year in the NICU with her first born child. Emily shares her story as well as tips for parents who find themselves in the NICU. We discuss what you can do to support friends and family members who have a little one in the NICU and how you can support your mental health through this process. As with Dr. Psota’s story, this one is a tear-jerker and we want to give the disclaimer that it may be triggering.
We’d like to say a special thank you to today’s Podcast Partner: TrueFare, nationwide Whole30 Approved meal delivery company. Get 5 free breakfasts with your order on their website with the code WHOLEMAMAS.
Emily Hughes 0:03
Your child just needs you to be there to advocate for them, to hear your voice, to be held by you more than anything else. And whatever you need to do to take care of yourself to be able to do that, that’s what matters, more than anything.
Stephanie Greunke 0:18
Welcome back to the Whole Mamas Podcast. We’re here to give you tools, resources and evidence-based information so you can make the best decisions for yourself and your family. Whether you’re trying to conceive, or navigating life with a toddler or a teenager, we’ve got you covered. I’m Stephanie Greunke, registered dietitian and Program Director for Whole30’s Whole Mamas Club. I’m also the co-creator of Whole30’s pregnancy program and upcoming postpartum program. And my co-host is Dr. Elana Roumell, pediatric naturopathic doctor and creator of Med School for Moms – an online resource which teaches moms how to safely be a doctor mom.
Before we jump into the episode, I want to introduce you to our new podcast partner, TrueFare. TrueFare delivers pre-made nutrition-dense meals to your doorstep, no matter where you live in the country. They use organic produce, grass-fed beef, heritage-breed pork, and organic or free-range poultry so they meet our picky mama standards. And as a bonus, every meal on their website is Whole30 approved, so they eliminate the guesswork if you’re doing a Whole30, or if you’re embracing your food freedom. We’re partnering with them for this episode because we truly stand by the people behind the company. We think the meals are delicious and we love the convenience, especially as we navigate busy seasons of motherhood. Because let’s face it, life with littles doesn’t always go as planned and we can use all the help we can get. These meals are perfect if you’re on the go and you want to grab something quick for lunch, if you’re having trouble getting dinner on the table after a long day at work, if you want to stack your freezer with healthy meals before baby arrives and when you need more variety in your life. TrueFare can even support moms who are navigating life and the NICU like today’s guest, Emily and her husband used TrueFare’s meals while they were in the NICU. They didn’t have to time to cook healthy meals, but knew they’d be able to keep their mental and physical strength up if they continued to eating well and taking care of themselves. They were able to complete a Whole30 while they’re in and out of the hospital using the TrueFare meals and snacks. In fact, many of our Whole Mama’s Pregnancy program members chipped in to purchase these meals for Emily’s family as encouragement to help them keep going. It’s a gift you can give yourself or you can purchase for loved ones to show them that you care, even if you’re not physically close enough to help them person. You can choose between Whole30, keto low-carb or AIP meal plans to get you through a few weeks or order individual meals. Simply add whatever sounds good to your cart and let them deliver it to your doorstep. These meals are created by incredible chefs and they come fully cooked and frozen, so all you need to do is unwrap reheat and enjoy. They can be kept frozen for up to a year so their great as freezer meals or just stock your freezer with them. So when you need a quick dinner, it’s ready. I love their jerk chicken and mango sauce with organic butternut squash for a quick lunch and chicken hash for breakfast. It’s made with organic chicken, sweet potatoes, apples and walnuts.
If you’re ready to try some of TrueFare’s delicious meals, we want to offer you a special discount code that will hook you up with three free breakfast with your order. It’s about time someone cooks for you, Mama! So now you can have dinner and breakfast ready and waiting for you with our special offer. Just head to truefare.com and use the code WHOLEMAMAS in all capitals at checkout. We’d love to see how you’re using their meals to make your life easier. So make sure to tag @wholemamasclub and @truefare in your pics and stories when you’re enjoying them.
Alright on to today’s episode. As mentioned on our last episode, Elana and I are passionate about sharing all different types of birth stories and experiences. So no matter where you are, you can identify with information, you can know you’re not alone, and you can have tons of resources to support you. Navigating the NICU isn’t something we really touched on. But it’s a life changing experience that really should get more attention than is offered both here and elsewhere. Last week, the lineup brought Dr. Erin on the show to share her story as a pediatric provider navigating life in the NICU and today I’m grateful to have Emily Hughes on our show to share her experience navigating life in the NICU with their sweet daughter Abigail. Emily is a member of our pregnancy program and has been someone near and dear to my heart. And in this episode, she opens up and bravely shares her journey from the time she was put on bed rest to her year long experience in the NICU to her life after the NICU with Abigail back at home, who’s thriving and doing well. Her story is so moving, and their strength and positivity throughout this experience shines brightly. I knew I had to bring her on the show to share her experience and offer tools and resources that she found helpful that parents can use if they find themselves in the NICU.
Now for the first 30 minutes, she’s going to share her story in great detail from being on bed rest, to the early days in the NICU and then starting at 30 minutes she’s going to share specific tips and how she kept herself mentally and physically strong. She offers tons of advice, insight tools and resources for parents navigating the NICU. And this information is also helpful if you have a loved one navigating the NICU so you can learn what things to say and to do to help them during this very difficult season. Again, this episode may be triggering. So it may not be appropriate if you’re still sensitive to this topic. Alright, let’s welcome Emily to the show.
And I know this is a hard conversation to have, so we both have our box of Kleenex here and we’re going to do our best. This is real life and this is a real story. And I just know how much value you’re going to be able to share today and how many families you’re going to help with your story. So I really appreciate that. Before we dive into your your journey, Abby’s journey, I love to start with our icebreaker question, which is really important, especially you know, for those who are currently in the NICU, or if we are in a really difficult season of our lives, we need to take that second, even if it’s just for a simple minute to take care of ourselves. So I’d love to hear what you have done today or what you’re planning on doing today to nourish yourself.
Emily, I am so grateful to have you here with us today on our show. Emily is a member of our Whole Mamas pregnancy program and we’re so lucky to have her with us because her story and her experience is something that we’ve talked about on previous episodes with life and the NICU but everybody’s story is so unique. Emily’s strength, courage and optimism and the ability to find the silver lining through all of this has just been beautiful. And I can’t think of a better person to really bring on the show today to talk about life in the NICU. So thank you so much for being here with us today, Emily.
Emily Hughes 6:04
You’re welcom. Thank you for having me.
I did enjoy today taking a walk with my dog. It’s one of my favorite things to do. Probably because I can talk out loud, and she just looks at me like I’m crazy, as I’m thinking through my day or what have you. And then I enjoyed the Rachel Hollis book, so just listening to a chapter of that and just kind of reflecting. It’s probably one of my favorite things that I did today. Just to take care of me.
Stephanie Greunke 7:23
Those are two of my favorite things. Emily, I love taking a walk, like just a really nice leisurely walk. And I love Rachel Hollis. So yes, you’re after my heart, for sure. Drinking another LaCroix too,` which is always very good. So the funny thing that I did to do to take care of myself today to nourish myself is I had dark chocolate at breakfast. We had it out last night for dinner. And we were running around after dinner and I didn’t put it away. So I saw it hanging out on my countertop this morning while I was waiting for my coffee to brew and I was like it was meant to be it. Yeah, and I mean a warm cup of coffee with a piece of dark chocolate is just like my thing. It was a great way to start my day.
Emily Hughes 8:08
Awesome, I love it!
Stephanie Greunke 8:10
Alright, so let’s get into it. Emily. I don’t know where you want to start. I mean, we could go from your experience in your third trimester with bed rest, or whatever you feel comfortable sharing and whatever detail. You can take it away.
Emily Hughes 8:25
Um, I actually never made it to my third trimester.
Stephanie Greunke 8:28
I’m sorry, second trimester.
Emily Hughes 8:29
Yeah, Abby was born at 26 weeks and three days. And as you’ve mentioned, everyone’s story of how they end up in the NICU is very different. We actually learned at our 18-week sonagram that something was going on, but they weren’t sure what was. Abby herself looked very healthy. And when I was literally on the sonogram table, I had started to get severe cramping to the point that I thought I just had to really badly use the bathroom. But what was actually happening was, I was starting to have clotting, and my placenta from behind the scenes, which they couldn’t see on the sonogram, was starting to detach from the uterine wall. So I went from my 18-week sonogram where you think you’re going to have your image of your child and enjoy, I don’t know, dinner with your husband or your partner, or what have you to being told that you’re being admitted to the hospital for observation. And that’s when our lives turned upside down, we were given a lot of very grim options that day. And it was pretty much let’s see what happens over the next 24 hours. Fortunately, we were able to see more amniotic fluid.
The next day, things looked up for the most part. And that’s when it was just to be careful. So at 18 weeks, like the working out was limited. And by limited, I mean, I could just go for walks, I wasn’t really allowed to do anything else any further. And I just kind of had to watch myself. From 18 weeks up until I started my 21st week, I would have cramping, which they would relate to being similar to basically labor pains. And being that Abigail is my first I didn’t know what that meant. But they were horrific and scary, obviously, because they’re not something that you’re expecting to feel that early on in your pregnancy. And then at 21 weeks is when the clot that they had seen 18 weeks, I started to pass, which was very sizable, like a lacrosse ball. And that’s when we were basically transferred from our hospital to the care where we ultimately had Abby, and from 21 to 24 weeks, I was in and out of the hospital pretty like two to three weeks at time. And then once I hit 24 weeks, I checked back in until I had Abby. So from 21 weeks on I was on bed rest, with about three fourths of it being hospitalized bed rest.
Stephanie Greunke 11:16
And what was that like for you being told that you would have to be in bed rest and then being on bed rest? I mean, what was that experience? Like what did you do to kind of pass the time?
Emily Hughes 11:26
I was fortunate in the fact that, well, I guess I should preface this. My husband and I actually got married when I was 20 weeks pregnant, we had been engaged and planned the wedding. And our wedding date was supposed to be the following November. And this was in February when it all started to happen. And we just changed our plans once we found out we were pregnant. So Abby has always been one to throw us curveballs, even from the very beginning, if you will. So like any new bride, I was fortunate to have my mother-in-law move in with us right away to be there with me, because they did have a very severe fear of if my placenta were to rupture, that I couldn’t be left alone. It would be my life that would be on the line, as you can potentially bleed out from that. So with that in mind, I was fortunate to have someone there or else, I think that my options would have been even more grim for me and my husband to consider with our daughter.
And then I mean, it’s a mental struggle. Ultimately, I think any woman who is having a child has an idea where you see like the beautiful Gazelle woman running, and her she’s pregnant and gorgeous. And here I am thinking I can’t even like shower except for like every two days, because they didn’t want me to be standing up for too long and to cause issues. So just that in mind what I ended up ultimately doing, when I learned that we had to make it to 24 weeks for Abby to have a real fighting chance, if you will. I’m a numbers person. So I told my husband, I need the countdown, I need to have numbers on like a yellow pad of paper we had, where I could go and tear sheet off each day and be like, okay, we made it. And there’s another day down. And with that, you know, I did take the time and use it as a chance for me to kind of hang out with Abby, since I knew that we wouldn’t be getting the full nine months. We were told that right away that we would be very fortunate to make it to 24 weeks. So I guess I just flipped the script in my head to enjoy what I could. Again, new bride, not what you would think you’d be having as a new bride and you’re having your first child. But I am a big believer in life is definitely what you make of it. And how you decide to react is how it will unfold. And I I don’t mean to make that sound cheesy or anything of that nature. It’s just something that I was raised with and hold on tightly to.
Stephanie Greunke 14:19
Yeah. And did it take you a while to get to that point? I mean, I’m sure initially, there’s just like a lot of like fear and concern and discipline.
Emily Hughes 14:27
Yeah, it wasn’t an overnight thing at all. It was completely the stages of grief, you know, you have shock, and then you are just trying to understand what’s happening. There is definitely a lot of anger that I had going on which to this day, I still am trying to forgive myself for just because it just isn’t something that you want to be feeling when you’re trying to hold on to miracle of life. And then eventually, I had to come to acceptance and say, you know, this is either going to be something that we step up to. And I was very vocal to my husband and my family on what I needed while I was on bed rest and decided that you know, if this is what’s going to be, then I just need to focus on trying to get to 24 weeks. And I think having that goal in mind definitely helps. Now with that in mind, once I did hit 24 weeks, and I was in the hospital, that was a little bit different situation, because you’re no longer in the comfort of your own home, I had to have a constant monitor on me for Abby’s heartbeat to be checked in the morning and at night. And because of the bleeding I had had, they wouldn’t even let me off the hospital floor. So my husband and I, the walking I was allowed to do would be on the hospital floor. And we were very fortunate we had an amazing, amazing Labor and Delivery staff. So I did tell them, you know, I was on a date with my husband, and please order food that’s not from the cafeteria. And, you know, I think that’s something important, the people that are taking care of you are human. And so they know what it’s like for you to need that human interaction, and you just have to be opening and welcoming to it.
Stephanie Greunke 16:26
That’s awesome. I’m glad that you are advocating for what you need. And it seems like you know, I’m just like getting from you, that you’re very clear on like, these are the things that I need and even talking about, when you are on bedrest, making sure that you told your husband and you told your family and even the nurses, what you need it. I mean, that’s fantastic that you were able to do that.
Emily Hughes 16:45
Yes. But I will say that with the caveat of that person was there until I gave birth.
Stephanie Greunke 16:52
So let’s talk about the birth. Let’s talk about the birth at, you know, 26 weeks, right? And three days.
Emily Hughes 17:00
So I remember it way too clearly, purely because we run “Abby-watches” we called it. And I don’t know why, but I just had a feeling in the pit of my stomach that I knew the one day that my in-laws were gone, my parents had left and they weren’t within an hour’s drive, and my husband was having meetings that were was about 45 minutes away with no traffic. And they live in the DC Baltimore area, so traffic is a constant part of your life. I just had a feeling in my stomach, that Abby was coming that day because I was alone, which was my biggest fear. And we were prepped for the fact that I would have to have a C section, which was not anything that I ever wanted to do to this day. And I’ve had one and obviously survived it. Not that there are more huge mortality rates, but to me, there’s just something scary about life being taken out of you while you’re lying there awake that I don’t think I could ever come to grips with even now. But we were doing the morning routine that we were used to and put Abby on the heart monitor. And that day even I was just feeling tired, like I just needed more rest. And I asked them to do it a little bit later. And they did and I knew within 10 minutes the door knocked or opened, and there was my nurse and I said, ‘It’s time isn’t it?’ and there was the attending right behind her who happened to be pregnant herself. And I just remember asking, ‘Can get my husband? I need you to call my sister-in-law.’ because she ironically worked at the hospital and she was there that day. And, ‘Can please promise me she’s gonna be okay?’ And she just looked at me and said, ‘We’re going to do everything we can. We have to get you in to a C section now, we have to get you prepped.’ And I don’t know how my husband got there in time, because they had me in the operating room within 30 minutes. By that time after bed rest, I didn’t have a lot of veins left for them to find areas to prep me in case anything were to happen. So I think that was my saving graces was that it took so long for the anesthesiologist to find what they could put an IV in and apparently you need two at the time. And that bought us an extra 10 to 15 minutes, it got my husband there. So, you know, it’s just a very emotional day, obviously.
Stephanie Greunke 19:35
And I remember the post that you put in our Facebook group about Abby being born at 26 weeks and three days. And just like this strength even that you had in the post that you realized that you had a long road ahead of you. But you were told by the NICU nurse that she could tell that Abby was healthy. And she could tell that you did everything you possibly could for her. Man, like when I read that I was like, ‘Oh, I just wanna hug that nurse for giving you that like reassurance that,’ you know? You really were so strong throughout this whole process and I know you did the Whole30 and like you really were doing everything possible.
Emily Hughes 20:19
Yes, which by the way, Whole30 on a hospital cafeteria food is not easy. And I would advise if anyone finds themselves in my position and you’re on bed rest in the hospital, again, I asked for my own fridge. And I said, ‘I don’t know how you can pull this off. But can I please have one because I would like to have my own food, I would like to still take care of myself. And if you want me to mentally make it through this, I need to know I’m doing that.’ And maybe it was a game of manipulation a little bit to the staff, because obviously I could probably have lived off their food, I just wouldn’t feel as good. And I did. I made that a huge priority as long as I knew how to and that nurse you mentioned, actually, we just saw her yesterday. Yeah, so she and I are still very, very good friends. And that was a moment where I just try to absorb everything. And I think that’s just who I am. So everyone’s position is different. But you know, you’re standing in the middle of a hurricane trying to hold on to anything. And that’s all I could do is focus on the hope that whatever was to come was a season, and seasons change, and they get better, and life evolves, and you become stronger. And you just have to trust the process.
Stephanie Greunke 21:40
You are just you are one incredible woman, you really are. Okay, so she was born at 26 weeks, and then you had quite an extended stay in the NICU so yeah, let’s talk about that. How long was it? And you know, what was that process like, maybe we can kind of chunk it into like different quarters of like, initially, and then like as she started getting better. And I know there was a point where like, you posted a picture of her and it was like the first time that she had seen sunlight and had a window and you just shared this journey with us and I love that we could you know be on that journey with you and support you throughout it. So yeah, let’s talk about the NICU and had you had any friends or family or did you know anybody that experienced life in the NICU, or was this a complete new experience?
Emily Hughes 22:29
So I had friends that had been in the NICU but no one that had a micro premie, which is a child that is born before 28 weeks of gestation. And because my water had broken when I had hit that 21 week mark, I had known that you could carry a child after your water breaks. But again, no one had had their water break that early. They call the first few days in the NICU, maybe even week, the “honeymoon phase” because as you’re coming out of the days that I just had a child, the child’s body is also becoming aware that it’s no longer in its environment, no matter how they tried to emulate the womb, obviously they can’t. So Abby’s honeymoon period lasted about 36 hours. And then at three in the morning, we had a knock on my door awakening my husband and letting us know that Abby needed immediate surgery because she had what they call a sudden intestinal perforation in her bowl. And that essentially meant that her bowels were leaking into her body, which would cause her to become septic. And they had prepared us for what we could be dealing with because of my water breaking so early that Abby missed the crucial time of lung and intestinal development. So with that happening, it meant that we couldn’t be trying to get Abby any breast milk, she had to be fed MPO, which is essentially that they’re putting vitamins and nutrients into her body through a central line. So a line that goes up into her heart that kind of pumps it through her body. And then we made it through that surgery and Abby was back and able to handle having a CPAP machine on, essentially to breathe. So she was breathing on her own and really doing very well. And then we kind of were back to coasting a bit, if you will, just kind of taking it day by day. But with a sip again, they delayed the feeding, at least that was the protocol at our institution.
And then around Father’s Day, I remember holding Abby and she just wasn’t reacting well to the kangaroo time. They had just removed the drains from her thinking that, you know, everything was good to go, and that evening, I got a phone call from the doctor saying that they have to intubate Abby, and she wasn’t doing well and they didn’t know why. With that, I will say everything with Abby, we always seem to be chasing an infection. She was on a long list of antibiotics to a point that I asked if she would have any immune system left or be able to even take anything as she became older. And with the intubation, the scary part of that was that we knew it meant that she was more susceptible to an infection. You’re pushing oxygen down their very fragile lungs, which they need to live and it’s a double edged sword – they need the oxygen to live, but at the same time, it’s forced pressure. So you’re potentially damaging very fragile lung tissue. And that was our June.
And then we got to July and around July 10, Abby was going to be extubated. At 830, I called the doctor I confirmed everything was okay, game-on that we’re going to be taking the breathing tube out. I said, Great. My husband, I love him, but he decided that he would go and serve jury duty and give me time with Abby, because that was was a stressor in our relationship, because I still wasn’t ready not to have just me and her time. But at 10:30 I got a call from the doctor saying that we needed to get to the hospital as quickly and as safely as we could, that Abby has taken a turn and they don’t know what’s wrong, but she’s on 100% oxygen support. And it’s not good. And I think that probably would be the one of the darkest starts of our NICU stay, and at that time, we had already been there for two and a half months. And that was probably when the shutting down happened. I didn’t know what to say I needed, I didn’t know how to really asked questions. You have specialists of every sort talking to you. I love anyone in the medical field for their dedication to helping, but some can explain to you things in layman’s terms. And at some point in anyone’s job, I think you become a little jaded. So you forget that you are talking to someone and sometimes completely shattering their insides as they’re trying to just pick up any piece to understand. So yeah, that was probably the hardest day, followed by Abby had made it through the night. And then I called in the morning, because I would call every shift change to see how Abby was doing. Instead I got a call that morning from the doctor saying that they had to spend three hours resusitating Abby, and that we needed to tell them what life saving measures we were willing to take for her. And if we understood the implications of what could happen, meaning there was the lack of oxygen and why they’ve done everything, they can’t promise that there isn’t brain damage, things of that nature, because they resuscitated her there could be broken bones, all these things to which my only response was, ‘Unless you tell me that there’s no hope for my daughter, she hasn’t told me to let go. So we’re not going to and broken bones will heal. And we’re just not there. So I I need you to do everything in your power to make sure that she is okay.’ That remember, that was definitely the longest week when I probably had my first panic attack. And I remember not eating, trying to drink, not sleeping, and really then needing to kind of be pulled out of a very dark hole, I didn’t know what else to do. I mean, you’re just trying to make it to like the next hour with your child. And you’re relying on people that have been doing this for so many years. But to you, it’s the first time obviously, and it’s just it’s very scary. And you look to them to give you all the answers, and they can’t promise you that your child’s going to be okay. And they never did, they did promise that they’re doing everything they can.
And I think for me, my saving grace was honestly the nurses, they knew I wasn’t okay. And during that week, I literally would call through the night every two hours to find out if Abby was doing okay. I tried to set a timer on my phone so they didn’t think I was extremely crazy and calling like every 45 minutes. My child is not the only child they’re taking care of. And one nurse finally said to me that, ‘Abby is now stabilizing and if you don’t take care of yourself, then you won’t be able to continue helping her and you’re your child’s biggest advocate. And if you aren’t here for her mentally, physically, what have you, then Abby’s not going to have the team she needs.’ And that was a big moment for me, if you will, a big aha. And I kind of thought of that saying, if you don’t put on your oxygen mask first and then help your child you won’t be able to help your child. And essentially, that was my oxygen mask for me to finally go see someone professionally, talk to someone to get my strength back, to get my words back, to help me find a routine in the crazy hurricane that we were living, and to be able to be a stronger person for my daughter, and my husband.
Stephanie Greunke 30:44
It’s such a beautiful thing for that nurse and the fact that they were kind when you called every two hours. I mean, I would totally be that mom to just like you thinking about it, you can’t sleep like it’s on your mind. So those two hours that you’re waiting probably felt like it entire day, not hearing anything from her. And for that nurse to understand that you needed to put the oxygen mask on and to be able to say it in a way that didn’t like upset you but really empowered you. So what kind of structure or routines did you start implementing to take care of yourself?
Emily Hughes 31:20
So by that time, I had I’d taken leave from work for decent amount of time. So I had decided to start working again and needing that structure back in my life. And for me, one of the reasons also for that was prior to this hurricane, all I knew was a very different life previously. And one of those things was working and I needed something one thing that I could control. So I started to work more from home. And I would set up and forced myself to get up in the morning, to have my cup of coffee, to go for a walk to kind of give myself some me time, then I would work from home until like 3:30, give or take, sometimes like 2:00. And then from two until maybe eight or nine o’clock, depending, I would be at the hospital with Abby, and I would ask my husband, if I could actually have like, from two to five maybe just time with me and her. Because I think that was one of my largest obstacles overcome was, I lost that whole third trimester. And it was something that I look forward to and just being able to talk to her to feel her kick, you know, just to have that time with my child. And I didn’t necessarily care to have the bump and be glowing, and whatnot. But I just look forward to just to that time period. And to just be that one that like, I know that she’s hiccuping, I know that she is kicking or she’s moving. Not having that just made me feel very insecure, in wondering if she knew that I was her mom, that she knew I was there, that I was still providing her everything that she needed to live. Because I just didn’t know anymore, because I was sitting in a room for so long watching machines basically do what my body was supposed to be doing. And I just felt very inadequate. And for me having that structure where I could focus on myself, I could go back to something that I knew about my life before this happened and then I could go and have a few hours to be with her, and to read with her hold her what have you. And then my husband would meet me at the hospital, and we would do a bath time routine, and sing to her and whatnot, then, you know, go home and start the day again, it just it brought a piece of normal to my life to our lives. And it just very much helped. And even with family that came to visit, certain ones had access to visit Abby when a parent wasn’t there. And I asked them to go on their own time when I wouldn’t be there. And that is when I got my voice back on what I needed to be able to make it to the next day, if you will, you know just saying I need my own time. And I don’t care if you think I’m being selfish, if you don’t like what I’m saying to you or what I’m requesting right now, my priorities are my welfare, my marriage and my child. And that is the only thing that I’m going to be laser focused on and everything else is just going to need to fall to the wayside. And I kind of just got over offending anyone or having to apologize because I didn’t send out an update to certain people or what have you. Yeah, I mean, that’s kind of how it went.
Stephanie Greunke 35:10
I have a hard time thinking anybody thought you’re being selfish during all of this.
Emily Hughes 35:14
I mean, some people just want to be there for you. But you know, everyone handles everything in their own way. You have families that are able to do updates online to a caring bird site, and that’s great for them. For us, we were a fresh family of three, and just trying to figure out what every day would be for us. And we just held a lot of things close to the sleeve, because it was becoming too much trying to update people while you’re still trying to salvage and understand the information that’s been given to you, before you even explain to others. But I think that some people do see that is selfish, and I can understand why. And it’s not in a way that negatively, they just want to be there for you and want to be included. But you just don’t know how to do that yet.
Stephanie Greunke 36:11
Yeah, absolutely. Well, I’m proud of you for for doing what you did to to keeping things as intimate as needed and taking care of yourself. And its survival, you’ve got to do whatever gets you through each day. So let’s talk about how long you were there – how many total days were you in the NICU with Abigail?
Emily Hughes 36:31
Abby was in the NICU for 275 days. And day 276 we got transferred to a pediatric floor. And that was one that had windows and Abby could actually see sunlight anytime she wanted to. And then we were basically there in a holding place until we could go to a rehabilitation hospital and where they would work with Abby on trying to get her to take a bottle and be able to lower her oxygen needs just to know that we could go home with her as she was. So in total Abby was in the hospital for 314 days.
Stephanie Greunke 37:20
You were on a really long journey with her. And as she she’s home today, how is she doing? And you know, how are you doing with the transition having her home?
Emily Hughes 37:30
She’s thriving, which is something that we just always wanted to be able to say. And again, being first-time parents, and I don’t know how parents that have other children survive a NICU roads like we had by any means. Those are true warrior moms, and dads. But for us, you know, everyone kept saying, ‘Oh, my God, are you so excited, she gets to come home!’ And of course we are, but as we got closer to her discharge date, I became very skeptical because we had been given so many dates of Abby coming home that never actually came to fruition. So I kind of became a ‘Yeah, believe it when I see it.’ And as it started to come, that’s when I finally could actually decorate the nursery. Abby home on March 11. And I probably couldn’t bring myself to decorate the nursery until February. And knew like okay, we are in the safest place you’ve been that our child can come home.
But on the other hand, there comes this fear because we’ve had a medical team with Abby 24 hours, seven days a week, when we couldn’t do it. And so it’s gut-checking, I think to finally bring home, your child who’s medically fragile is so used to having someone show up every 12 hours bright eyed, bushy tailed, ready to go. And you know, it’s just making sure how do you provide that same support? So on one hand, it’s this moment of I, I kind of think of that woman in the IKEA commercial, who is like, get the car, get the car, like I’m running. And then on the other hand, it’s this, ‘Oh my god, what if something happens on our watch?’ And if you hold on to that fear of ‘Oh my god, what happens if/then’ that can definitely take away from the celebration part. And I think if there’s anything that I have learned through this whole journey, is a very true statement that if you hold gratitude closer than you hold fear, is much easier for you to make it through your days.
Stephanie Greunke 39:41
Again, you’re just so strong. I just love to hear like wisdom. You’re wise beyond your years. So I know from a perspective of a friend or family member, you talked about them saying like, ‘Oh, aren’t you so happy? She’s home.’ But were there a couple of other things that were said to you maybe with good intent, but just kind of like stabbed? Can you kind of share some things that like people may not know, that are harmful that they say.
Emily Hughes 40:13
The biggest one for me was, ‘I don’t know how you leave her every night,’ as though I had a choice. And honestly, if you don’t leave, the nurses tell you to go home, because they want you to be taking care of yourself. And as they would say to us, we do little tiny humans here. And if you don’t take care of yourself, then you’re in a whole different part of the hospital. And we will have to send you there. Okay, got it. And I know people are saying that usually in a way of admiration, but to someone going through it, I would just have this scream inside me of, ‘I don’t have a choice!’ I mean, I would love to be like you with your child right now walking the park and able to point out a bird dog and watch them, you know, just take it all in. And my child doesn’t even have room with windows. So it’s one of those things where it’s just, I don’t even know if there’s a better way to say it or if it’s something that you just don’t say. Or if you just instead of saying, ‘How do you do it every night?’ to say, ‘I know that can’t can’t be easy to go home without your child. But isn’t it so lucky that you’re able to be there every day?’ You know, something that just doesn’t make it feel like there is a choice and the fact because I think any parent that has gone through the NICU would tell you that it would never be their choice to ever be in the NICU.
Stephanie Greunke 41:48
That’s great information. It’s something that we just really need to be mindful of how we’re communicating these things, and sometimes, you know, just like being there and being present, and just saying, ‘I’m so sorry,’ and offering ways that they can help. And so that’s my next question is like, what are some of the things that friends or family members or colleagues or the nurse staff did that really helped you that we can keep in mind for helping friends or family that end up in the NICU?
Emily Hughes 42:15
I mean, the nurses were basically were your therapist. I mean, they would talk us through things and I don’t know how they do it. They sit there, they hold your hand, they cry with you, and then they get up and they don’t go and like gather themselves for a moment, they go to the next room to take care of the next family. So they’re near literal walking angels. But I think the biggest thing that you can do for any friend, family member that’s in this time of need, depending on your relationship, I was fortunately lucky enough that our family just came into our house and did the laundry. And after you have, especially after you’ve been on bed rest, and you just finally get to come home to your own bed at have a moment just put on a clean pair of underwear and no one’s going to be inspecting your body for at least you know, a few weeks. It’s just so nice to just have it done for you, without having to think about it. Then also, we had a lot of people respect the fact that maybe we weren’t ready to talk to everyone. So they actually set up a cooler outside of our house, and people would just drop off meals. And I did tell them that I was doing Whole30 and was trying to breastfeed and what have you, or pump (I never had the opportunity to breastfeed). And they would take that to heart. And if they couldn’t provide a meal that would kind of fit like the requirements and we gave them a list of meals that we loved. Then they would give us gift cards to be able to go food shopping and what have you. I mean the community through Whole30 Healthy, Baby, Healthy Mama, was amazing. I think that one floored us more than anything, because you do have an idea of what you expect from the people, but you have no idea how gracious and kind strangers can be. And sometimes you need that more than you actually need those very close to you.
Stephanie Greunke 42:39
I’m so glad we could do that for you. You’re having me tear up here. So what we did was the members of our Healthy Mommy, Happy Baby community, we were with Emily through her whole journey. And we just saw how much of a light she was in how strong she was, and just really wanted to do what we could to support her. And we knew that she was trying her best to eat healthy. So we all just kind of put our money together. And we offered her 20 days of meals from TrueFare, which were Whole30 meals. And then we gave her a Thrive gift card so that she could kind of order the snacks. We just really wanted to start with food to nourish you, because we knew that that was really important to you.
It yet was one of the greatest gifts, honestly. Because it just let us again, have a piece of normal and you weren’t eating in the cafeteria, my husband and I have a meal together. Little things like that make a big difference when your life’s in a season like ours was.
Yeah, those are those are great tips that you shared for some of the ways that we can help. And I don’t know if you saw there was just a post in our group today, where one of our members said that their brother and sister in law just had their baby boy. And I don’t know if you looked at the comments that were underneath that, but I kind of pulled some of them because they were really good. So some of them we already talked about, like having someone come and clean your house and do the laundry, whether that’s like a professional service, or you do it for them. So this was this was when I wouldn’t have thought of but sometimes you know, the baby will come before you have your baby shower or before you kind of wash all the newborn clothes. So bringing those to the hospital or having those ready for when baby comes home, or even helping to set up the baby room, if that’s something that parents want you to do. Also, bringing healthy food and snacks to the hospital because, like you said, sometimes the cafeteria food isn’t much you feel good eating or if you just sick of eating it, if you’re there that long. They talked about Grab and Go goal meals. So you know if somebody like you is working and navigating life in the NICU, something to go, lactation cookies to help with like the the milk supply, those are nourishing and comforting, getting them a hands free pumping bra, if they don’t have that in the hospital.
Emily Hughes 46:32
And I would say, I will be very transparent here, I think because Abigail wasn’t able to be fed any type of breast milk or anything for so long, I was happy if I can make three ounces in a week. It just wasn’t happening. And I think it’s important for moms to understand. And then in the NICU, I friended women that I was amazed,I was like, ‘You’re literally made to breastfeed,’ and maybe again, you know, the thoughts of inadequacy came into my mind. But there is this point where you have to accept that fed is best. I would still say to try so that you know that you did, I definitely pushed myself as much as I could to do it. I would absolutely take the lactation cookies, because they’re just really, really good. Anything else, you’re at least still taking care of yourself. But you know, there can be this immense pressure to try and make up for whatever you couldn’t do, at least I did this myself for whatever you could have provided, because your baby came early, or what have you. And just know that that doesn’t mean you have to push yourself to be pumping and causing yourself to feel more anguish, it means that you just need to decide how best it’s going to be for you to be there. And that’s what your child needs most. Your child just needs you to be there, to advocate for them, to hear your voice, to be held by you more than anything else. And whatever you need to do to take care of yourself to be able to do that, that’s what matters more than anything.
Stephanie Greunke 48:07
It’s so true. It’s so true. They just need your love at that time, and they need food of some sort. The more that I come to work with moms that are navigating mental health conditions, or they’ve had really difficult experiences, the more like open I am to like just going with whatever works, right, like not even pushing all the different milk donors and trying to find somebody like, do whatever you need to and own it right, like own that. That’s your choice. And it’s a great choice. So yeah, I love that you mentioned that. And then just a couple of other things that I know I wouldn’t have thought of. And did you see the one about money for parking. So it’s like they’re in a big city, the parking money adds up.
Emily Hughes 48:59
So we were very fortunate, again, that my sister in law worked for the hospital. And she actually works for their foundation committees. So she had access to parking passes. And we were also fortunate that we live near a hospital. But not every family is, and even with having parking distance, we still spent over $2,000 in parking, and being able to buy vouchers for your family or to find a way to do that is amazing. Another great thing is if they live in a place where they offer the Uber rides, I know one woman was taking the bus from where she was staying because her house was three states away. And it would take her an extra hour to get home. But you people would send her Uber gift card so that she could get to the hospital very fast if need be, without having to spend more money and whatnot. I mean, there is a financial portion of this and it’s the last thing you want to be thinking of as you’re just trying to like make it through. And another one that I on that list, which I really wish that this woman was my friend too, was massage.
And a big part of NICU life that I noticed that is really hard is that it’s very hard on a relationship between the parents of the child. And if you don’t take care of that, I mean, you still have the storm brewing when you have the baby home. And I wish that my husband and I even took more time for the two of us, you know, outside of the hospital, because it’s just something that is very important for you to do. Because you need that foundation when you come home with your baby too. So like a massage gift card or even like a gift card or date night, or something of that nature. We probably didn’t go to the hospital maybe two nights, I think, that both of us didn’t go for the evening routine, because we would go during the day. And then we actually went out at night to dinner or we went to visit my family and just took an evening off. But we were fortunate enough to be able to ask someone and our family to go and read Abigail book and kind of do our routine, if you will. And I wish we had asked for that more, because it helped us to take a moment to brief. And we did we would least sometimes, especially during like the really hard hard times, we would each get one day a week where we would give each other, I hate to say the day off, but a break from being in the hospital. Because I can tell you the alarms you hear especially if you are in there for the duration that we are I mean, those sounds don’t go away. I mean, the other day, I left my refrigerator open as I was putting away groceries and all of a sudden I thought it was my daughter’s feeding tube that wasn’t working. And I’m about to call the medical rental company. And then I realized that I just left the refrigerator door open. So those are other things, and when we both kind of got into our routine is when taking one night off a week was something that would be good and would allow us to be refreshed. And I also gave each parent time to bond and you know, and have that enjoyment with our baby one on one, which you know, you don’t get when you’re in the NICU.
Stephanie Greunke 52:42
Oh, yeah, absolutely. And, you know, to the point that we were talking about with how the money adds up with parking, and even just the food, if you’re using the hospital cafeteria, or you’re like taking time off of work to take care of the baby. And you know, some families will set up a goal fund me page, or if you don’t feel comfortable doing that, you could do that for a family that you know is set that up for them if they’re okay with it, and that will help help offset some of the costs of their NICU stay.
Emily Hughes 53:10
Yes, absolutely. And I would also advocate that you get to know your social worker very well. We were able to find financial assistance through programs that have already been created for families like ours, and that was very helpful. And then another thing that I would also encourage any parent to do, it has helped me heal as we have been able to move forward with Abigail, we took a picture of her every day. And what it ended up helping us do is be able to notice how much progress she had made. I’ll take that back, for seven days, Abby was actually put into a medically induced coma. And there was really only seven days we did not take a photo. But because our journey was so long, it would help us at the beginning of Abby, making it another month to be able to go back and watch the slideshow of those photos and just remind ourselves of how strong she is, and how strong we are. And during those dark dark days, it helped me remember that, we still have a lot of fight left, like there just hasn’t been a reason yet to let go. And I think even if our story had gone differently, it would have it would help me know that my daughter was a fighter, no matter the timeline that she had here with us. At least I like to think that and even as she grows older, and I know that we will have challenges, I have started to see that she was very stubborn, as I am. I tell my husband all the time, ‘Good luck when I am going through menopause and she’s going through puberty, you may want to shed in the backyard.’ But you know, it’s important for us to just remember, just get so busy and you especially when you have a medically fragile child, that you forget how great you’ve done so far. And just taking that moment to breathe and remind yourself and, for us, pictures have done that. And it’s just it’s very helpful.
Stephanie Greunke 55:29
You guys are such warriors. Is there anything you want to leave our listeners with? Any like last minute pieces of advice or parts parts of your story that we didn’t cover?
Emily Hughes 55:44
I mean, I’m sure that there are pieces that I’ve left out. Obviously, 314 days is a very long and extensive time to be in the hospital. And I think there’s one thing that I will say is whatever the duration is that you’re there, I do believe that it doesn’t take much time to be in an NICU for you to be changed and that your time is significant. Because I know some people are like, ‘Oh, well, my child was you know, born at 32 weeks, and we were only there for seven days.’ Well, seven days is still a lot. It’s not probably what part of your plan was. And to that note, to a mom like me, when someone says, ‘My daughter was three weeks early,’ I’m like, ‘Yeah, mine was three months,’ you know, it’s not a comparison. Just, again, realize that whatever your journey was, it can evolve you and change you and I would let it that’s been the best thing to do for me is to just let it happen and accept what you can control what you can and every day, just heal from it a little bit more.
Stephanie Greunke 57:04
Such a great piece to end. So thank you so much for sharing all of your wisdom and just this story that I know people are going to have it resonate with them, and they’re gonna want to reach out to you and get in touch with you whether it’s a virtual hug, or it’s like, you know, ‘Oh my gosh, well, this happened to me,’ and just connect with you in whatever way how ca people get in touch with you?
Emily Hughes 57:28
I can provide my email address.
Stephanie Greunke 57:31
Oh, I mean, if you would like to otherwise, if you have an Instagram handle, whatever you like.
Emily Hughes 57:39
I do have an Instagram handle if that works best for people. And some people like that, because then they know, I’ve actually read their messages. My Instagram handle is @em986. And it does say in there that I’m a NICU mom, and it does share more about our story, along with images of Abby. And there is a link there that connects you to where we fully shared our story, as a thank you to the hospital that took care of our whole family.
Stephanie Greunke 58:10
Yeah, and I have a link to that too in the show notes. But that’s a beautiful video. So I wanted to share it in case people wanted to see it. So thank you so much for being with us today and sharing your story. I just I love talking to you. I love being in your presence and your energy is just thank you so great.
Emily Hughes 58:29
So I really hope you know that you’ve done a great job, you started something very beautiful. And I am eternally grateful that I found the site that you all are running, just to have a place to speak, and vent, and also ask for help. It’s just it is something that matters more than you may realize.
Stephanie Greunke 58:50
Thank you so much. That means a lot to me and we love having you on the program. And thank you so much for agreeing to be with us today. We’ll talk soon.
Thank you for listening to today’s episode. We also want to thank Emily and Dr. Erin for bravely sharing their stories. While you may not relate to everything they said, we hope you have a better understanding of what life is like in the NICU and why these families are true warriors. If you are NICU mama, we hope you feel less alone and more understood by hearing their stories. We also want to thank our podcast partner TrueFare for delivering high quality meals to Emily’s family so she could stay physically and mentally strong during Abigail’s NICU stay. And thank you to the amazing community of mamas and our Whole Mamas pregnancy program who supported Emily’s journey by offering words of encouragement and gifts to let her know we care.
Don’t forget that you can order TRUEFARE meals for your family or for a family in need. And get three free breakfast by heading to truefare.com and using codeWHOLEMAMAS. Consider adding them to your baby registry to receive the gift of comforting, nourishing food to support you after baby arrives. If you enjoyed the episode, please help us up by sharing the podcast with your mama friends and writing us a review on iTunes. Let us know what you enjoyed about the episode and help us grow our village. You can also visit our website wholemamasclub.com/podcasts for show notes, find past episodes, to see transcripts and leave comments and questions for future shows. And as always, please remember that the views and ideas presented on this podcast are for informational purposes only. All information content and materials presented on this podcast are not intended to serve as a substitute for the consultation, diagnosis and or medical treatment of a qualified physician or health care provider. Consult with your provider before starting any diet supplement regimen or to determine the appropriateness of the information shared on the podcast or if you have any questions regarding pediatrics, pregnancy or your prenatal treatment plan. Now go on. Have a great day, and nourish and nurture yourself and your family.
- A heartfelt story about navigating life for 1 year in the NICU
- Navigating work and NICU life
- How to stay mentally and physically strong
- Advice and tips for NICU parents
- How to support parents who may be navigating the NICU
- Resources for mamas and more
- Connect with Emily on IG
- Video: Abigail’s story
- Caring Bridge
- The HMHB Weekly Email Series
- Whole Mamas Pregnancy Program
- Dr. Elana’s Med School For Moms
- Dr. Elana’s Medical Center: Nourish Medical Center
- Follow Steph and Elana on Instagram
- Whole Mamas Podcast Archive
This episode's guest
Emily is a member of our Whole Mamas Pregnancy Program. She resides with her husband, Craig, daughter, Abigail, and dog in Annapolis, MD. Emily had her daughter when she was 35 years old. Abigail was born at 26.3 weeks. Emily and her family endured 314 days in the hospital, 275 of those days were spent in the NICU.
Emily and her husband completed a Whole30 while her daughter was in the NICU to help them feel their best during this difficult season. She feels compelled to tell her story so that it can help others know they’re not alone and offer support and advice to other NICU parents.