Episode 6: NICU Awareness
September is Neonatal Intensive Care Unit (NICU) Awareness Month. Our guest is Deb Discenza, preemie mom, founder & CEO of PreemieWorld. Deb shares her personal experience with the NICU, as well as the amazing work she does at PreemieWorld helping parents navigate the NICU and their babies' continued development.
Today's Guest:
Combining fields in technology and publishing, Deb has created PreemieWorld as the go-to space for education, support and resources for the preemie community including the acclaimed book, The Preemie Parent’s Survival Guide to the NICU. Prior to PreemieWorld Deb founded and ran the award-winning Preemie Magazine.
When not sought after for speaking engagements, media and news-related spots for the medical and general public, Deb provides public service to her community in the form of being a founding member and steering committee member of the National Premature Infant Health Coalition and a founding member and former Leadership team member of the Preemie Parent Alliance. She is also a regular Column Editor for the Neonatal Network’s Neonatal Network Journal, and a columnist for both the quarterly newsletter for the Council of International Neonatal Nurses (COINN) and for Neonatal Intensive Care magazine.
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Amy
Welcome to Growing Up Brainy your portal into what's happening inside your baby's brain. We interview the experts, demystify the science and help you nurture your child towards a bright, open future.
Hi there, I'm your host Amy Husted, startup addict boy, mom of two, and chief commercial officer here at smallTalk. As you may or may not know, September is NICU Awareness Month. And on today's episode, I have the pleasure of talking with Deb Discenza. She is the founder of Preemie World, which is an amazing resource for parents as they may be navigating through the NICU and the development of their premature child. Before we jump into our topic and a little bit of Deb's story. Deb, I would love if you started sharing a bit about your personal story and how you came to found Preemie world.
Deb
Sure. Thank you for having me. My journey started in a grocery store bathroom about an hour outside of town, an hour plus. I discovered my water had broken and the family, everyone was in the car. We were having a day trip and I just burst into tears. I was so upset. I was so worried. I was like, I knew it was a girl. I said, Becky, I'm so sorry. I'm so sorry. I knew I was 30 weeks. And so what am I going to do? I got thrust into the NICU environment before I was ready, but it was quite a journey. And she came out kicking and screaming 30 hours later at two pounds, 15 and a half ounces at 30 weeks and like a day. It was amazing. So that's a little bit about me. And then I started Preemie world as part of the journey to educate parents and provide them with real information, including our book, "The Preemie Parents Survival Guide to the NICU."
Amy
Wow. Deb, I'm so sorry that you had that experience. And on that note of the word sorry, what I noticed is that you immediately upon this beginning to happen, apologized to your daughter. And I just, I mean, I think it's just so common that women internalize a premature birth as something that they did wrong. What were you experiencing in that moment?
Deb
Absolutely. A huge amount of guilt and great sadness and also a little anger because I was like, I had been advocating for my daughter in the doctor's office. I had been clear that I had been born a little early myself. And I was told immediately, oh, no, no, no, don't worry about it. It's your first baby. You'll be late. Here I was a month later, and then I was seeing her in the incubator and I got really mad.
Amy
What would you say to moms now as they might go through that and that guilt they may feel?
Deb
There's only so much you can do in a pregnancy. You have almost no control over it. Everyone thinks that if you eat, like, these certain foods or you avoid these certain foods, that you'll have a perfect pregnancy. And that's a complete fallacy. I mean, they really, there is no perfect pregnancy. People will tell you that. And it's really a lie. For those of us that end up in a high risk pregnancy, it's challenging, but, you know, you're strong and you can do this. So just take it day by day or hour by hour and just know you're doing the best you can.
Amy
I love that. So, Deb, for those listening who have not undergone this experience, who have not experienced a stay in the NICU, can you share with us a bit about what is that experience like? What are these parents and babies going through?
Deb
Well, first and foremost, it's usually the dads or grandparent or somebody that the parent has picked out to go with that baby to the NICU. Oftentimes, like I did the moms back in the delivery room, either being cleared up from a C-section or from the birth, like literally I delivered the placenta as they were zooming Becky out of the room. This is very, very common. And so really for the moms, the first real moment they get to see their baby, is it eye level. You don't look down into an incubator because you're usually in a wheelchair. So you get to look at your child. You get to try and stand up when you're feeling horrible and you're exhausted and you're stressed. And so we immediately look at this incubator and you're terrified because you've just been put through basically surgical cleaning in the washroom. They basically have you wash up to your elbows. You have to scrub up for two minutes and you get to wear a gown. Some parents, obviously, during the pandemic wore a mask. I think I wore a mask at first. And it's just it's terrifying because you feel like you're going into surgery more than you are going to see your child.
Amy
Yeah. Wow. That is it's such an incredible thing that honestly, I have not had babies in the NICU. So those are new things that I'm thinking about, the perspective that I wouldn't have considered experiencing. And then it kind of makes me think, what about beyond that first day? So that's a bit about that first meeting. What about if you're there for days, for weeks, for longer than that? What's that experience like for parents and for their babies?
Deb
It's exhausting because there is healing from the pregnancy itself. There is trying to produce breast milk, which moms feel greatly pressured to do that because they know it's. The best thing for their baby and beyond that, the overcoming, the trauma and then just the sounds of the NICU are exhausting in itself. There's a lot of beeping. There's a lot of noise. There are a lot of people rushing around. I remember in my daughter's NICU it was the old style. And we had there was a phone right by her bed because the nurses' station was right behind us. And literally we could hear ringing. It was awful. So it just it sort of builds on you that trauma, the noises of the alarms on the monitors, and it sends you into a place of trauma and it comes back again and again and again. And it can spill into your private life. You can spill into your life decades down the road like it did with me when my father was dying.
Amy
Wow. And what about, I think something that moms miss so much in that time and loved ones at all, dads included, is that opportunity to bond with your baby. And I know that's something you're really passionate about. So what are some methods? How can parents bond in ways maybe that they can't do typically?
Deb
Right. So here's a funny little story. I was in the NICU one day, my mother in law's there visiting. She's a former R.N. She said, I wonder when they'll let you do Kangaroo Care. And I kind of like went, oh, really? Kangaroo Care what? I didn't know what it was. And I was kind of like looking around like, where's the kangaroo in here? I didn't realize it was me. So I kept telling, like, I want to do kangaroo care. I want to do kangaroo care. It's really good for her. OK, I had no clue. OK, come in with your with a button down shirt the next day, make sure you showered and everything clean and we'll get you started. OK, so they think I come in. I'm already they put me in this like lounge chair kind of thing, like a pool patio side lounge chair like a by a pool. And they tip me way back to the point where I thought I was going to fall out of this lounge chair for a while. And then from there, I had my shirt open and they literally I saw Becky coming toward me in the hands of the nurse and just they plopped her down to my chest. And it was like, I'm such a loving mother. This is my moment bonding away, thinking, wow, it's like a clammy, wriggling insect on my chest, which is horrible.
But it was true. And then very quickly, my husband's next to me, says, yeah, you got to see this look on her face. And I'm like, What? What? I can't because she's right here and I can't see around. And he's like, what is to take a picture, take a picture? And that's one of our favorite pictures to this day with Becky's feeling of pure bliss on her face while she was just going into a deep sleep. And I was like, oh, OK. I think I sort of get this. And then I looked up at the monitor and said, oh, wow, her vitals are normalizing. Was like literally could see things improving my body temperature change to help her regulate her temperature. It was stunning. I was hooked. I was totally hooked when I understood how I was able to help her in that way. And for me, bonding in that way was so important because it really gave me back some of that power I had lost with the birth. And I think that that's so crucial and that parents, both parents, need to do that.
Other things that we did, we did the first bath and the first bath for me was like a rebirth in its own way. And then I got to see my daughter completely naked. No wires, no leads, nothing, not even a diaper. And that was really powerful. But one of the biggest things that I tell parents about, because oftentimes early on, you do not get to hold your child for like several days a week, months. Your child knows your smell and your child especially knows your voice. And that would be for both parents, but especially mom. And they're soothed by it. It's so important to be able to read your child or sing to your child and to just talk to your child. So there's different things. If you can keep your voice, you can do something. You can find a way to provide your voice for your child when you're not able to visit because it's hard to get into the unit. It really is. So you're able to do that. That's really powerful and it helps your baby in some ways. It helps you relax and help stimulate their brain. That's the beginnings of speech for them. Yeah, that's really powerful.
Amy
So that is such a beautiful moments that you're sharing in there, Deb. And I love your honesty within it. I think that that's what parents need to hear, because I think the guilt only compounds when you don't feel connected to your baby or you don't feel like it's a natural, comfortable experience. So I think that other mothers hearing that is going to be really powerful. So thank you for your honesty, even in the parts that didn't feel glamorous.
Deb
Not at all.
Amy
And then also for our listeners who may or may not know, smallTalk actually got its start in the NICU. Our co-founder Natalie Maitre developed a product smallTalk the original smallTalk that brings mother's voice into the NICU. So by that way, mothers can record their voice onto the smallTalk egg. It can be safely inserted into the NICU incubator. And they can hear that voice, that familiar voice that's so important to their development, as you mentioned, Deb. So that's just a fun fact for those listening, that that is something that we hear at smallTalk are passionate about and working towards creating change, as well as bringing Mother's voice into the NICU. Well, we are going to take a quick minute and we will be right back.
The Growing Up Brainy podcast is brought to you by smallTalk. smallTalk allows your baby to engage with foreign language through play. This interactive language exposure during infancy results in what we like to call brain magic. Wiring your little ones brain with the building blocks of a new language and getting them a different and better brain for a lifetime. Look for our first product, the smallTalk Egg, launching this fall of 2021.
So again, Deb, thanks so much for opening up about these topics in these things and these experiences. And we've spent a little bit of time already talking about what's happening in the NICU but let's transition a bit to what is happening after the NICU. So you get home with baby. What does that look like in those first days and further development in the years to come? What should parents expect?
Deb
Well, it's exhausting because a lot of parents bring their babies home on medical equipment like we did with Becky. Some come home with a lot more like a tracheostomy. Becky just came home on oxygen and a monitor. And for us, that was exhausting and overwhelming in and of itself. When parents are dealing with that, they also have a high risk for readmission to the hospital, though they can't go back into the NAKU, they end up going to the pediatric or we call the Pedes unit. And Becky did do that. She had serious feeding issues, weight gain issues. She had a lot of alarms on her monitors and stuff. And so that's very common. And I think if someone had told me that ahead of time, I would have been prepared for it. Once again, I felt graded. I felt like the monitors were grading me. I felt like the experience was grading me as a parent and her going back into the hospital, even though I knew it was the right thing to do. It was just one more thing.
And so you're reliving kind of that trauma or that guilt again and again. But very quickly, I was learning how to become that parent, to really, instead of just being the person that takes care of the baby and does all the medications and provides the feedings and all that stuff, I really was learning to be her advocate in the best way possible. And that came in the form of many different things that would be like in the hospital. When she went back in, I told them, I want to feed her now. No, I'm going to do the feeding. Even though I was terrified of feeding my child. It came in the form of being in the doctor's office saying, no, I want this done or I have questions about this, or I'm going to provide you an entire log of all of her feedings medications and so you can have a sense of what her activities have been like since we last saw you. And to the shock of her pulmonologist. And you add in things like follow-ups with other professionals for her eye exams, for her, the health department coming in to do a screening on her because she didn't qualify for early intervention. And early intervention is a program that's basically zero to three from birth until three years old, where they can assess the child for developmental challenges and help with therapies. And Becky didn't qualify for that, even though she was thirty weeks and we were having all these problems so that on the discharge paperwork in my list of things to do as an option was to connect with the health department and their infant monitoring program could follow her.
Well, I jumped on that because I was like my first thought upon meeting Becky was, oh, God, what have I done? And, oh, God, is she going to walk? Is she going to talk to me? What's going to happen here? And so she did really well in the infant monitoring program and they were really helpful to us. But ultimately, we ended up going back into early intervention and getting an evaluation at the behest of the health department. Thank God for them, because Becky was very delayed. We knew it, but we didn't know how bad it was. But she was just 18 months old when she went into early intervention. When it was that was another it was another moment. It was another moment to sort of go, OK, this is not normal. This is not normal. But let's keep going. We'll get it done. I learned an awful lot about myself as a person myself and learned how to be extremely direct with the team around her. And I don't think I'd ever been like that with people before. I could be that way at work and everything else, but in a medical setting, never. And so this was completely different.
Amy
Yeah, well, you're going to bat for your little girl. Yeah, that changes everything. I think all parents can relate to that feeling of you can be more confident and step out more when you're doing it on behalf of your kids. So many hard things that parents are going through. Tell us a little bit about what you're doing at Preemie World, like you've experienced a lot of hard things, but you're using those experiences to hopefully make parents experiencing this in the future have a little bit of an easier time and something that's never going to be easy, but it could be a little bit easier. So what are you doing at Preemie World to help change these narratives a bit?
Deb
Well, for me, one of the hardest things was there are books in the market, parenting a premature baby, and I think they're all great. However, I wanted something vastly different and I needed something vastly different. And I needed to celebrate my child, not just look at what was basically a medical textbook or an encyclopedia. And so my coauthor, Nicole Conn and I connected together and created Preemie world and wrote The Preemie Parents Survival Guide to the NICU. This book is the book we would have wanted. We wanted something colorful. We wanted something friendly. We wanted to incorporate our stories in there to keep people sane and be very honest. And we even have dark humor in there, which is a very big part of the Preemie experience. But you don't see that in the other books. So we put our glossary in the front of the book because we just flipped it because we felt for the parents going into the NICU that's what they really need to know right now. They need to know what these terms mean. They need to know information and links and Websites that they should be going to related to those items. So really, for us, this book was a chance to not only help the families educate themselves, but to empower them, if you will, to advocate for their child. The thing that I had to learn to do on my own and with that, we are also working on the preemie parents survival guide to after the NICU, because being a parent after the Nuku is its whole own journey. It's its own book. I think we may need to write several books, honestly, because it's an experience, it's a real experience. There's so much that needs to be done. My daughter is going to be turning 18 in a couple of months. And quite frankly, I feel like we're still on that journey. We definitely are.
So as far as Preemie World goes, we have our free newsletters. We have ones for parents and we have ones for professionals. They're free, they're digital. So we're environmentally friendly and it allows parents to get information and find out about resources out there. Same with the professionals. And we highlight a professional every month. And beyond that, we have this section called Freebies on our Website. These are just downloads, they're freebie downloads or PDF. We have a preemie birth certificate that they can fill out. We have an angel certificate to fill out as well, because so many babies that don't make it, they don't get that kind of certificate. They don't get a birth certificate sometimes. So I think that that's really important. And to recognize them, I think that's so key. And beyond all that, we've just got a Preemie directory, tons of resources in that section calendar of events.
We work very hard on our social media to point those things out. But we we're not doing that. We're cheering people on like this morning, we have Meme Monday. And we had this thing about the hand sanitizer and how you feel when you're using all that hand sanitizer all the time and how your hands feel. And it really look like a lizard, really dry hands. And it was just hilarious and getting a lot of attention right now. So, yeah.
Amy
That's fun. I love it. You're connecting people to resources, celebrating them along the way and a little bit of humor to lighten the mood. It's a perfect mix. Absolutely. So, Deb, as a mom who has been there before and is an expert on this topic, what advice or words of wisdom would you give to other parents of premature babies, whether they perhaps haven't experienced that yet, if it's something that they're going to experience or even if it's something that they have experienced and they're still processing through?
Deb
Right. I tell families all the time that they are the expert of their child, that they knew that baby first and therefore they know their baby best. And so even if they're in a high-risk pregnancy or they're in the NICU and they feel like the entire world is telling them things about their child and are the experts, they're experts, too, and they have to make sure that they make it clear they're part of the team no matter what, and that they need to be respected and heard and truly listened to. And that really it's when it comes to things like caring for your baby in the NICU, it can feel so easy to just hand everything over to the nurses because that's what they do all the. Along, they take care of these babies, the doctors, they dictate a lot of things for the nurses to carry out with the babies. Well, the parents should say, like I did, I want to do kangaroo care, even though I don't have a clue what it is. I want to do something with my child. I want to bond with my child and to make it clear, speak up, because nobody's going to do it for you. So this is your time to shine.
Amy
Yeah, I love that confidence boost of reminding them that they're experts of their baby and they're experts, too. I love that. And then what about for those who aren't experiencing the NICU themselves, but maybe have a friend or a relative who are? What's your advice when you're walking through life alongside someone who's experiencing something so difficult and so traumatic?
Deb
It's funny that you mention that because this happens like at least once every other month where somebody reaches out to me and says, Deb, I know that you had Becky early and that you Preemie World and you do all these different things. How can I help my friend? They just had a preemie. What can I tell them? And so usually I give them the booster of, like, look, just be the listening friend, provide them with any help that they can ask for. You know, just basically, can you do some chores or errands or anything? Just sit and listen. Don't try to tell them or fix the situation for them because you don't know this experience. And really, ultimately, they've got to make sure that they keep their mouths shut because really those comments can come out and they can ruin friendships, family relationships, everything. And so really, they're not the experts in this situation. Their friend or family member is. And so the best rule is silence, silence, silence, silence.
Amy
Yeah, you can be silent and still be with somebody and offer joyful encouragement and all of that, but not necessarily jump in with some advice. Exactly. So, Deb, before we go, are there any other resources that you would like to share that are available to parents who are going through this experience?
Deb
Yes, absolutely. So one of the things I did in creating Preemie World and other entities before that, I actually launched a little online community and is now hosted on Inspire.com. So if you go to Preemie.inspire.com, it's a free community, it's private, it's very welcoming. We have like sixty three thousand of your best friends from around the world on there. And sometimes people lurk and they research and other times people are rushing in with all sorts of different experiences. But we all hang there together and we're all being supportive of one another. So I highly recommend it. I think it's very helpful to people.
Amy
I love that we will surely in the show notes, anyone that's listening, you can go to the notes on this podcast and we will link that community. We will link Preemie World and everything that Deb is providing to parents who might be going through this experience. And I just want to thank you for your time. I'm so thankful for the honesty that you brought today. That's the purpose of NICU Awareness Month, is to normalize and help people see that, you know, you didn't do anything wrong that caused your baby to be born early and that there's really a community out there that wants to help and support and get parents through these times. That will never be easy, but we can hopefully make them a little bit easier.
Deb
Yeah. Thank you so much.
Amy
Well, that is all we have for you today. Thanks so much for joining us on Growing up Brainy. Till next time we hope you'll subscribe, leave us a review, or best of all, follow smallTalk.tech on Instagram to join in the conversation.