Transcript episode #76: What You'll Want To Know About Having A Baby In The NICU With Dr. Terri Major-Kincade
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This is the episode I wish I would have had when I had a preemie baby. Welcome to the All About Pregnancy & Birth podcast. I'm Dr. Nicole Calloway Rankins, a practicing board certified OB GYN who's had the privilege of helping hundreds of moms bring their babies into this world. I'm here to help you be knowledgeable, prepared, confident, and empowered to have a beautiful pregnancy and birth. Quick note, this podcast is for educational purposes only and is not a substitute for medical advice. Check out the full disclaimer at www.ncrcoaching.com/disclaimer. Now let's get to it.
Hello. Hello. Welcome to another episode of the podcast. This is episode number 76. Thank you, thank you, thank you for spending a bit of your time with me today. In today's episode, we have Dr. Terri Major-Kincade. She is a double board certified neonatologist and pediatrician. She's been practicing in the North Dallas area for the past 17 years. And for the past three years has actually been practicing nationally in three different states. Dr. Terri specializes in health disparities, physician/parent communication, high risk infant followup and neonatal palliative care and perinatal hospice. Friends and family affectionately call her Dr. Boo and her biggest passion is giving families the gift of hope. For those of you who may not know, my first daughter was a preemie. She was born eight weeks premature at 32 weeks. She had a rare intestinal malformation called duodenal atresia. She had to have surgery three days after she was born and she spent a month in the NICU. She is of course, a healthy, happy 12 year old. Now, however, that month in the NICU was one of the hardest months of my life. And I mean it, when I say that the information in this episode is exactly what I wish I would have known to help me get through that challenging time.
So in this episode, you are going to learn the most common reasons babies are admitted to the NICU, what parents can expect when their baby is admitted to the NICU, how families can advocate for themselves and their baby when the baby's in the NICU, what happens after baby leaves the NICU. And then we end with some advice on how to manage having a new baby in the age of COVID. Now nobody of course plans to have their baby go to the NICU, but you want to be prepared for the possibility just in case. And this episode alone is exactly what you need to help you be prepared for that small possibility of that NICU stay. Now, speaking of being prepared for possibilities, part of my beautiful birth prep process within my online childbirth education class, The Birth Preparation Course, part of my process is getting ready for the possibilities that may happen during your labor and birth. There's a whole module on labor induction augmentation, cesarean birth, vacuum, forceps, episiotomy, some common complications that may happen during birth. And it's not overwhelming. It's just enough information so that you are prepared just in case. You can check out the entire Birth Preparation Course at www.ncrcoaching.com/enroll. It is currently quite heavily discounted because of COVID. I want to be sure that the course is accessible for most. So you can check that out at www.ncrcoaching.com/enroll. All right, let's get into today's episode with Dr. Terri Major-Kincade.
Nicole: Thank you so much Dr. Terri for agreeing to be on the podcast. I am so, so excited to have you here.
Terri: I'm super excited to be here.
Nicole: Yes, I have a soft spot, of course, for a neonatologist. My first daughter was a 32 week preemie and there's just something special about NICU folks.
Terri: I don't think I knew that. Well, I always say OBs are my besties.
Nicole: So why don't we start off by having you tell us a little bit about yourself and your work and your family?
Terri: Sure. Hey everybody, I'm Dr. Terri Major-Kincade. I'm based in Dallas, Texas. I've been practicing neonatology for 20 years. I'm actually entering my 21st year. I love it. My sister was a premature baby born in 1968. She survived. She was a 26 weeker born weighing one pound in 1968. And my parents were told she wouldn't even make it through the night. And so she, they didn't even name her for the first month because they were sure she wasn't going to make it. So my sister is 51 now and I'm 52. And so she, she made it. And so she is the reason why I wanted to be a neonatologist. I always wanted to be the kind of doctor that held the babies that could fit in the palm of your hand. And so I always credit her with my career. So I'm based here in Dallas as a neonatologist, as most of you guys know, I take care of premature babies.
Terri: That's what people usually think of. But I also take care of big term babies that may be sick and have to come to the ICU nursery as well. I additionally practiced neonatology in Nevada, as well as South Carolina and Georgia. My other passion in neonatology is high risk infant follow up. I ran a follow up clinic for many years. I love seeing the preemies when they leave the nursery. And I also do palliative care and perinatal hospice because I often have to meet families whose babies may not survive. I've been married 26 years. We just celebrated our 26th wedding anniversary.
Nicole: Happy anniversary.
Terri: Thank you. My husband has hung in there with me since medical school and we have two children. They are 19 and 22, in college and in vet school. So my life's pretty full. I'm still doing what I always wanted to do. Take care of parents and preemies. I always say, neonatology is not the care of preemies, it's the care of families for that is what really keeps me going. And that's what motivates me to do my job, really taking care of families so that I can take care of their babies.
Nicole: Well you do it all, it sounds like. I mean, my goodness, you're in three states, you have done follow up clinics, you're in the NICU. So you are the perfect person to help women understand what it's like to have a NICU baby. Yeah, absolutely.
Terri: And also, I'm glad you shared, Dr. Nicole, about your experience having a preemie, because I always say to families in the NICU, both of my children were the product of normal pregnancies. So I feel like the NICU parents are really my best teachers. They are my best teachers and my sister, my friends who've gone through it. So I learned so much from parents. I do, my son does have special needs. So I know a little bit about what it's like to take care of a child with challenges. But I absolutely don't know what it's like to have my birth experience interrupted.
Nicole: Gotcha. Gotcha. Well, as you said, you know plenty about what happens. So with babies in the NICU, you've been doing this for a long time. And when you look at her, when you guys see her picture, she does not look like she's been doing this for this long. So why don't we start off with giving folks a little bit of understanding, or what are the most common reasons a baby may be admitted to the NICU?
Terri: Good questions. So the most common reason that babies come to the ICU nursery is because they are premature. And certainly in this day and age, everybody's seen a story on TV, about a miracle baby, a one pound baby. There was just a story about the smallest baby ever. The baby was like 13 ounces, to survive. So that's what people usually think of. But I think your audience probably would be surprised to find out that half of the babies in the ICU nursery at any given time, actually aren't that premature. They may only be one month early, a few weeks, early, two months early. They may even be five, six, seven, eight, nine, 10 pounds. So second and third, most common reasons for coming to the NICU outside prematurity or one, if you're a term baby, you may come to the NICU just because you had a little trouble breathing.
Terri: You had a little fluid in your lungs. A lot of babies will have a transitional period, have some issues with breathing, this is actually quite normal, but it may take awhile to get through that. Instead the baby may have to come to the ICU nursery for monitoring. So breathing for a term baby, transitional problems with breathing. And then another really common reason that a lot of term babies come to the ICU nursery is for jaundice, a lot of babies have yellow jaundice. A lot of people call it yellow jaundice. That's when the bilirubin or the breakdown products of old red blood cells are in our blood. All babies have that. All humans have that. Every human went through this at birth. And it usually resolves itself over the first three to five days. But for some babies, because they're not getting enough fluid, they're not eating enough, they may have extra red blood cells. Their jaundice numbers may be too high.
Terri: And so they may come to the ICU nursery for treatment for that. And then the last thing is infection. So if mom has a fever and you deal with this, Dr. Nicole, if mom has a fever and the obstetrician thinks that mom may have an infection, that's called chorioamnionitis. So those babies may come to the ICU nursery. Just because we're monitoring to make sure the baby doesn't have a fever. So just to recap, so premature, premature is two weeks early. So sometimes people will say wait 36 weeks, but that's still early. And so prematurity breathing problems like fluid in the lungs or issues with that, or infection, mom had an infection, or sometimes if a baby has an infection and then the other, a bigger group of term babies may come to us because they have some type of birth defect. They need surgery, they may have a heart problem, stomach problem, intestinal problem, you know that where they may require surgery for something.
Nicole: My preemie also had duodenal atresia actually.
Terri: Did you know prior to delivery?
Nicole: I did. And we were expecting that she was going to be full term, but she busted out early.
Terri: Oh, wow. So she, sometimes we will get surprises and babies will need surgeries too. And they're preemies.
Nicole: Yup. I had both, I had both, she's a very healthy, happy 12 year old now, so yeah. And you know what we forgot to say basics, like what does NICU stand for?
Terri: Oh, I'm so glad you said that. So, because depending on whether you're in the United States or outside of the US, like if you're in the UK, they pronounce it Niku. I just learned this. NICU stands for neonatal intensive care unit. And so the short term for that would just be neonatal ICU, or sometimes I just say ICU nursery, you have to be careful when you're calling the hospitals, sometimes if you just say NICU, they may transfer you to the neurosurgery ICU, which is people getting their brain's addressed. So neonatal ICU. So parents will usually just say NICU, or if you're in the UK, you say NIKU. And sometimes like recently I just say ICU nursery because, for a lot of people that just brings it home for them. So I am for babies who are sick, who have to be in an ICU. So neonatal ICU.
Nicole: Perfect. Now, most folks are not expecting that their baby is going to go to the NICU. So what should families, moms, parents do when they first learn that their baby is going to go to the NICU? What can they expect?
Terri: Oh my gosh. So Dr. Nicole, I always say, when I go and meet a family, like my job is meeting people every day who do not want to meet me. They did not want to meet me. They were not going to see me. They didn't sign up for this. They may think I'm really nice, but they don't want to see me again because I am going into the room to say, Hey, I'm a neonatologist. I take care of premature babies. I take care of sick babies. Like your baby needs to come to the NICU. So the first thing parents should expect, if they have a baby that may be coming to the ICU nursery is this is going to be a disruption of your birth experience. It's going to be a change in everything you planned for. This is going to be different than what we had anticipated, because you have to kind of grieve all the things that you have planned for before somebody came and told you they were taking your baby to the ICU nursery.
Terri: And I think that we, as caregivers need to realize it's a big deal. Parents understand, hey, my baby's sick. My baby needs to be over there. But that doesn't mean that they don't get to grieve the loss of what they have planned for. That's a really important point. It's a big deal. Yeah, of course they understand. But that doesn't mean that they don't get to grieve what they have planned and hoped for because the baby's two or three months early, you're still thinking about your baby shower. You're still thinking about what you wanted to do with the nursery. You're still thinking about the photos, thinking about all of that stuff. And now you're having to deal with the fact that your child may be sick. So that's the first thing I would say.
Terri: The second thing I would say is recognize that most people have no idea what you're going through. Most people don't, unless they too have been in an ICU nursery. So you will have friends and family who will share their experiences of things that they did. But unless they've been in an ICU nursery, your experience is going to be different. And that's okay. Number three, the lay of the land. I think the number one thing most parents should recognize when they enter into an ICU nursery is that we have rules and protocols there that are designed for the best care of your baby. And they may not be designed for the best support of the family. But between the family and the baby, we're going to defer to the baby. And, I think the biggest example of that is the NICU is the only place in terms of mother/baby bonding, where we get to tell you, when you're going to hold your baby, we tell you, when you're going to hold your baby, how can you hold your baby, how often you're going to see your baby.
Terri: Now that's crazy! It's your baby. It's your baby. And so that's the first big hurdle moms and dads out there, is that we have rules in place that are designed for the best care of your baby. Now we want the same thing you want. We want your baby to get better and to get home as soon as possible. And sometimes these rules don't make sense. So one, your birth experience is going to be disrupted. If you have friends and family who haven't been in the NICU, they have no idea. And three, the actual bonding is somewhat controlled by rules and protocols. So in the beginning the baby's really sick, especially if the baby has an IV in the umbilical cord, you're not going to be able to hold the baby.
Terri: You'll be able to touch the baby, talk to the baby, but you won't necessarily be able to hold the baby. If the baby is very sick, needing a lot of oxygen, you may have to wait to hold your baby. And I actually have families now that I have been in touch with 20 years and even 20 years, they can tell you, oh, my baby was two weeks before I got to hold them. My baby was three weeks and two hours when I got to hold them. Every NICU mom remembers when they got to first hold their baby. So I think that those are the big things to understand, but then once you move those big things out, in your day to day visit, just recognize that even though your baby's there, and even though you're in an environment where there are rules in place, you still are the parent and I don't consider you a visitor. Parents are a part of our medical team and you can be an advocate for your baby. And so once you move past the, okay, my baby's here, we're going to have to deal with this. Hopefully we won't be here that long. Hopefully my baby will get through this just fine. But while I'm here every day, I can still be an advocate for my baby. And there's several ways that we can help you to be advocates for your baby. Cause you are a part of the medical team.
Nicole: I love this and we're going to get into how parents can advocate for themselves. But just thinking back my God, I wish somebody would have told me in that moment, give me that space to grieve the loss of what I was expecting was going to happen.
Terri: Yes. I mean, it's a big deal. Especially moms. They'll be going along, chugging along. Okay. My baby's here. Okay. I'm pumping, I'm providing breast milk. Okay. Got to hold my baby. I got to change the diaper. And then boom, it'll be the day that was supposed to be your baby shower or boom, it'll be your actual due date. And you're still in the NICU. And so those are anniversaries that moms have that we're not always aware of, but we need to be in sync with moms and dads as they're navigating this new journey.
Nicole: Absolutely. And the fact that you said like the whole lay of the land piece and why that makes a difference again, a really crucial point. And I just love how you're helping families understand those things up front.
Terri: Yes. I usually have, when I meet parents the first day in the NICU, Dr. Nicole, even if the baby was admitted the night before, I always say welcome to the NICU. Congratulations, you became a mom and dad today because after many people have said, this is so sad. This is so horrible. You're in the NICU. That's what they hear, but they're still a parent. Nothing has changed in terms of being a parent who has a child and other people get to celebrate the birth of their children. But NICU parents often have to hold their breaths for many, many days before they can actually exhale and sigh and count fingers and toes and be excited. So I always say that, and then in terms of the lay of the land, I would go through the equipment. It's a lot of bells and whistles, a lot of little people in plastic boxes. The noises don't even bother us where the NICU all the time. But if you've never been in a NICU, it can be quite noisy.
Nicole: Absolutely, absolutely. I can tell already you are just a blessing, a gift to the families you care for. Cause you truly do look out for everyone and everyone's well being.
Terri: I try to, I say I'm a pediatrician trapped in a neonatologist body.
Nicole: Oh goodness. So let's talk about things that families can do to advocate for themselves and their baby in the NICU.
Terri: Yeah. So one nice thing, about the way NICU's have evolved is that many, many, neonatal ICU's now have very family friendly environments. I'm not quite sure about how your experience was Dr. Nicole, but many NICU's now have family friendly environments, meaning private rooms, like all the rooms are private rooms. And one big thing that's happened in terms of family centered care is many NICU's have bedside rounds now. So number one way you can advocate for your child in the NICU is find out once your child is there when the medical team is actually rounding, when the medical team is rounding. So when it's the doctor, the nurse practitioner, the physician assistant, charge nurse, everybody, when are they going to be rounding? Because if you can be there when they round, that's the best way to get an update about your child.
Terri: You can take notes and ask detailed questions later, but that's one good way. Now, obviously, if you have a baby that's going to in the ICU nursery awhile, once you go back to work, if rounds are in the morning from 10 to 12, you're not going to be able to do that, but while you're home on maternity leave or when the baby is born, you should be able to do that. Second thing is find out if your NICU has webcam. So a lot of NICU's now have webcams. I work in 20 different NICU's and 10 of them, 11 now, 11 of them have webcams and many of them have websites where you can log in and you can actually see your baby. You can see the care, you can see what's going on. You can see the nurses providing the care, even if you can't be there at the bedside.
Terri: And grandparents can see them too, if you give them permission to do so. Three, for moms who are planning to breastfeed, breastfeeding is really, in my opinion, providing breast milk is the single most important thing you can do, particularly for an extremely premature baby. Because the benefits of breast milk or things that I can not give your child, we consider breastmilk medicine. And so, even though you won't be able to directly breastfeed initially, because the baby may be too sick, if you're planning to you can still pump, you can still pump and provide the milk and it'll give them antibodies and it'll help them regain their birth weight faster. They get more protein. There are a lot of benefits. Now, not every mom can provide breast milk and that's fine. If you have a very premature baby, we actually can provide donor breastmilk with your permission.
Terri: For kangaroo care, kangaroo care is my favorite thing, especially when the dads do it. So when you hear kangaroo, you know, kangaroos carry their babies in their pouches. They're little Joeys. They carry them in their pouches. So kangaroo care is skin to skin care. The baby does with the mom or dad, it is chest to chest, skin to skin, your heart rate regulates the baby's heart rate. Your temperature regulates the baby's temperature. Babies that kangaroo care actually gained their birth weight faster. They have less complications. They have less episodes where they have apnea and they go home sooner. And so it's actually very good for parental bonding. So even when your baby is really little and not able to take a bottle yet or not able to breastfeed yet, you can do skin to skin as soon as they're medically stable. And that's one of my favorite things. So in terms of advocating, just to summarize, try to figure out when the bedside rounds are, that's the best way to get the overall updates for your baby.
Terri: If you can't be there for the rounds, figure out the best time to check in with your medical care provider each day. I mean, really you should be hearing from them each day. Sometimes not a lot of change, but you should be hearing from them each day. You'll feel empowered if you know the plan. And usually when I share the plan, I try to share what I'm anticipating and what I would be worried about. Second thing is find out when you can do the kangaroo care. And then if you can, if your desire to breastfeed, if you can continue to provide the breast milk, and then most NICU's have the webcams, webcams and websites, and most of the NICU's have support groups now, but even if they don't have a direct support group in your NICU, there are many, many online support groups.
Terri: One of my favorite parts is hand to hold, where they can partner you with a virtual preemie mom who, or not necessarily preemie, a mom who has had a child who's gone through the same thing that you're going through. And I find that moms who have been through this provide the best support for families. Let me just say this last thing, please, please. So all of the things I talked about in terms of advocating for your baby, I'm talking about in the actual NICU, but you also have to advocate for your baby by advocating for yourself. So that means it's okay not to be in the NICU. It's okay not to be there 24 hours. It's okay if you go home to sleep, it's okay to go out and eat and go to the movies or see your girlfriends or drink some water.
Terri: We can't now because of COVID, but you have to take care of yourself. And so every mommy knows that we give so much to our kids. Every dad knows that, but we have to take time for ourselves so that we can be the best for our babies and NICU moms in particular have a lot of guilt about not being in the NICU. They have a lot of guilt leaving the hospital. Your body physically knows that you have had your baby and you're leaving the hospital without your baby. Your mind knows why your baby's there, but your body, NICU moms tend to carry a little guilt there. So make sure you take care of yourself too.
Nicole: You have said a whole word, right there. I mean, I still remember it. We went to visit our daughter every day, twice a day while she was there. And one day we missed and I still feel bad for that one day that we didn't go twice, you know?
Terri: It's so bad. My very first hospital that I worked at, when I moved into private practice, the NICU has something called date night for the parents once a month. It was when the NICU was closed from the, at that particular hospital, the NICU would be closed from 6:00 PM to 8:00 PM for the change of shift and from 6:00 PM to 8:00 PM, the parents could come to the doctor's dining. It was the doctor's dining lounge, but they converted it to look like a restaurant for parents. And the NICU nurses would serve them. They had aprons and little chef hats and they got to have a little gourmet meal with candle and rolls, like while the NICU was closed, I loved it. But yeah, parents have a lot of guilt. They just really feel bad if they're not there all the time for their babies. And I mean, we feel that even, even those of us who don't have babies in the NICU, like we have guilt about our children that are grown. My kids are 19 and 21. I'm still trying to figure out what I could have done differently when they were in junior high.
Nicole: Yes. I love how NICU's are very open to having family. I mean, you can really go in almost like 22 out of 24 hours of the day.
Terri: You can. And most of my NICU's now they're not closed at all. It's 24 hour visitation, not even for change of shift. A few may close an hour, but a lot of mine are 24 hours to allow the parents to come on whenever it's convenient for them.
Nicole: And I tell them, I'm like, y'all, they mean it. If you roll up at two o'clock in the morning and they'll just be like, hey, come on in.
Terri: I love it. Because once you get comfortable with it, I mean, I love it when the parents come in and they know when the... Oh, we didn't mention this, touch times. In terms of getting the lay of the land, when you're coming to visit your baby in the NICU, you can visit your baby whenever you want. But once your baby is stable, the hands on time, we try to cluster that every three hours, because every three hours, the baby's going to eat, need a diaper change, have the temperature taken. And what I love is when the parents come in and they're comfortable now, so the parents actually will come in and say, hey, yeah, changed the diaper. I took the temperature, you know, they do it themselves. And they just let the nurses know. So that is what I love. So sometimes the touch times that is hard for parents to get used to cause if your baby eats at nine and 12, but then you come at 10 and your baby's already eaten, you know, that can be a little stressful, but as the routine goes on, you'll be able to adjust to the routine and figure out what's the best times to come so that you can have the most hands on time with your baby.
Nicole: Absolutely, absolutely. So let's get into what are a few questions that parents should be asking the care team, the neonatologist, while their baby's in the NICU.
Terri: So I love that question because I find that often the questions parents have are not the questions that we would have, we the medical team. Parents often ask relatively easy questions. They don't always ask the hard questions. And, sometimes we're happy that you didn't ask the hard questions. Cause then we didn't have to have a hard conversation. But usually I tell my parents, you know, there are five questions that you should ask your medical team at least once a week. You know, you may not need to have to ask some every day if you get enough answers, because that's the way you're going to get the full lay of what your team is focused on and what might be coming next. The first question I usually say that parents should ask the medical team is what are you most concerned about today for my baby?
Terri: What are you concerned about? Because the parent may come in and say, hey, did they gain weight? You know, is there oxygen? And I'll say, yeah, they gained weight, the oxygen is fine. But if you say, well, what are you most concerned about Dr. Kinkaid? I might say, well, what I'm most concerned is, you know, that the oxygen this week is a little higher than it was last week. But I think that that's related to reflux or something else. But if you don't ask me that, then I'm not going to say that. So what are you most concerned about today for my baby? The next question is what medications are being given to my baby and why? So one of the things that's always surprising to me at night, if I'm called to talk to a family and I'm trying to explain to a family what's going on with their baby or some additional test that was run, or if the baby's having some complications that may be related to a medication, I'll say, oh, well, your baby's receiving this medication.
Terri: And sometimes when you receive this medication, we can see this. The parents will say, nobody told me my baby was getting this medication. I'll say, but your baby's been on this medication for two weeks. You know, because a lot of times there are routine things in neonatology that we may not necessarily discuss every single thing. I would add, hey, what medications is my baby on and why? Why this medication? So for example, caffeine, caffeine is a very common medication in the ICU nursery. We use it for sleep apnea. And sometimes parents, even if we mentioned it in the beginning, they may forget. And so then later, if the baby has a higher heart rate, we may say, oh, that's because of the caffeine. They may not remember that the baby was receiving caffeine. The next question is, when can I hold my baby? So we already talked about that.
Terri: So sometimes parents are afraid to ask. Sometimes we forget, we forget that you can hold your baby. And so, you know, we haven't brought it up. So the nurses haven't brought it up, we haven't brought it up and you haven't brought it up. So sometimes the baby will be three, four weeks old, have no IV in their umbilical cord, very stable. And the mom will say, well, when can I hold my baby? Because the first week you guys mentioned, you know, that I couldn't like, Oh my God, I've been able to hold my baby? Because we may have forgotten that. We may have thought that you held the baby at another time. Cause we're not there all the time. A hard question parents I think should ask the medical team is if this does not work, if this does not work, what are our other options?
Terri: If this does not work, it's my favorite question. So I'm always surprised if a parent asks me that on their own, I'm always encouraged to go there because I think one of the things that helps parent anxiety is to see what's next. To know what's coming next. You can plan for that. But if we just tell y'all out of the blue, it's kinda hard to plan for that. And the last question is, do you anticipate any longterm complications from this illness or from this procedure? If so, what? Because that's something that often at discharge we're telling you all at once. Oh, remember in week two when this happens, well, this is why we're seeing this, now remember week three, when this happened, this is why we're seeing this now. So I really like to hold the hands of parents on the journey and at each little milestone or each little signposts, I'd like to try to give them an idea of what may be coming and how we would address it. And I also like to give them an idea of what's next.
Nicole: I love that. I love that this is, I mean, this is fantastic advice. I didn't quite get this level. So y'all, I am telling you, she is telling you outstanding information to help you. If you do, you know, unexpectedly, find yourself with the NICU baby.
Terri: Yes. They're my favorite peeps. And the NICU babies, those are my favorite people.
Nicole: A hundred percent. And I remember the neonatologists, we got transferred to a separate hospital in town cause they needed space. Anyway, the neonatologist was like, y'all need to go out to the movies this weekend. Cause your baby's coming home on Monday. And we were like, huh?
Terri: I tell people that every weekend. Like, this your last free weekend, go enjoy it, for 18 years.
Nicole: Goodness, love it. Love it, love it. So speaking of babies leaving from the NICU, the NICU is actually, especially if your baby is preemie, the first part of the journey. What happens to babies when they leave?
Terri: Well, leaving the NICU. That's actually my second favorite part of the job. My favorite part of the job is going to deliveries. My favorite favorite, that just never gets old. Being in the delivery room when a new life comes into the world. Then my second favorite part was sending babies home. So sometimes the baby may have been there like five, six, seven, eight, nine months, 11 months. The longest I've had had a baby in the NICU is one year and two days.
Nicole: Oh my God.
Terri: And I'm telling you, sending them home is my favorite part. It's just, I mean, because it is what we live for. You've invested so much and now you get to take your baby home. So when you do get to take your baby home, if your baby was a bigger preemie, when I say bigger preemie, I mean 34 to 36 weeks, they may not have as many issues adjusting going home.
Terri: Their development may be a little delayed and we'll talk a little bit about that, but they may not have as many medical issues, so I'm gonna split them into categories. But if you had a smaller preemie, particularly if you had a micro preemie, when you go home they may go home with oxygen, they may go home with a monitor. If they have sleep apnea, they may go home with the equipment. They may have a feeding tube. They may have a breathing tube. It depends on what your baby actually goes home with. So if your baby goes home with any equipment, then normally you're going to go home with some nursing as well, and then close follow up. If your baby was just a preemie, and not going home with any equipment, but just the preemie, then they still are going to need follow up.
Terri: And we normally recommend you seeing your pediatrician early, within the first week after leaving the ICU nursery. A regular term baby, we would say they could wait two weeks, but a preemie, we like you to be seen within the first week because we want your pediatrician to see you at your well state, how we sent you home. We want the pediatrician to see the baby in their best condition. Once you actually go home, depending on how small the baby was or how well the baby's eating, the pediatrician may see you every one to two weeks for weight checks, until you can get through your first set of shots in terms of keeping your baby healthy. We're in COVID now. So everybody's very focused on everything in terms of germs and hand washing and social distancing. But in the NICU, we were already doing that.
Terri: And then we already had to put your cell phone in a Ziploc bag, cause cell phones are germ magnets in the NICU, we always wash our hands constantly in the NICU. We told you when you went home to keep your baby away from crowds. So when you first go home, I normally tell families, try to stay away from crowds until you get to the next set of shots. So maybe the two months shots, the four months shots, depending on how long they were in the NICU. And even then you want to try to minimize crowds. So the first crowds, most preemies are around, usually people will take their baby to church, they may have a blessing. They may have a delayed shower. I'll tell them just to put a picture of the baby on the diaper bag and just say, if you come to my house, the pictures on the door, hey, yes, baby's here, we'll see you guys in four to six months. We do not, you do not, you do not want to come back to the NICU. And for us, we don't want you to be readmitted either. So I usually say avoid crowds. So if you go home in January, I say don't go out until after Easter. If you go home in the fall, not to go out until after the RSV season. So that means November and Christmas, you need to keep your baby home with you
Nicole: She went home in December, and I'm not kidding, I did not let anybody touch my baby, like, I'm not playing.
Terri: Cause people, I mean, people will be oh, the baby's so cute and then somebody touches their face, and now you in jail because somebody touched your baby. Like it is not covered. Even in church people, the miniature hand sanitizers, keep them on your diaper bag, keep them on your infant carrier. People will come to your house and say, oh I had two or three kids, girl, give me this baby. Let me hold the baby. No, because you do not want that. Premature babies, their immune system is fragile, a cold in a premature baby can easily turn into pneumonia and they can easily end up having to be back on the oxygen and it's just not worth it. So your main goal when you bring them home is for them to grow, get stronger. Have their immune system get stronger. And the best way to do that is just to keep them minimize their contacts.
Terri: And then the people who are around them, obviously strict handwashing, but you want to avoid crowds. And so the two or the three most common reasons a premature baby is readmitted into the hospital is one infection. Especially if you go home in the winter, RSV is a type of pneumonia that premature babies can get an adult with RSV. It'll just look like the flu, but in a premature baby, they will get bronchiolitis. So pneumonia RSV is one of the most common reasons premature babies are admitted. The second most common reason is a choking spell with a feed. Cause even though they eat well, they still eat like a preemie. They go up a lot. They have to be paced with their swallowing, the moms and dads know how to feed them very well. Grandma may know how to feed them too if she came to the NICU to learn, but other people generally don't know how to feed your preemie.
Terri: So they will feed them like they will feed a term baby. And sometimes the babies will choke and turn blue because milk may get into the lungs. So infection like RSV or pneumonia or choking spell during a feeding. And then the third reason they may get readmitted is poor weight gain. So they were eating well in the ICU nursery. But for whatever reason, when they got home, they just weren't eating as well. Even when they, we changed your calories and change your formula. So they may have to come back and have an evaluation so that their weight gain is okay.
Nicole: So I can imagine in the area of COVID all of these things are taken up to the next degree.
Terri: Yes. Yes. It's just like, it's like being, I may have several NICU moms whose kids are older now. I'm like, Oh, we were doing that, you know, four years ago when we took our baby home. Because I mean, taking home a preemie, you really do have to do that. In terms of going home, I wanted to say, to remind the parents that preemies, in terms of development, premature babies will develop based on their true due date. They will develop based on their true due date. So if you have a baby who was 28 weeks, that's three months early. So just remember when your baby is a year old, your baby may be 12 months chronologically. Okay. On paper, based on their due date, but based on their birth date, their adjusted age, their corrected gestational age, they're only nine months.
Terri: So when your kid is 12 months and you're wondering why isn't my baby walking, their baby's walking. Maybe she'll walk by 12 months. Remember the corrected age is nine months. Some babies do walk at nine months, but most walk somewhere between 10 and 15 months. So just know that the walking, the talking, the rolling over, the sitting up, those things are going to develop based on their true due date. And so for preemies, once you go home, we will allow for your prematurity, generally until they get to be past age two. So until they get to be past age two, so 18 to 24 months, we're going to correct until 18 to 24 months corrected age. So they may be two and a half on paper, but they may really be two for the corrected age. We do not consider them delayed unless they have not caught up by then. Well, as a side note. I was a term baby who didn't walk until 15 months. I don't know why my mom wasn't concerned, but she, she had had another baby that was a preemie that was walking before me and they were still carrying me.
Terri: So just remember that because that's something a lot of NICU parents worry about when they go home is their development. And they're often comparing them to a term baby who was not premature or a baby who was not sick.
Nicole: Gotcha. Gotcha. Well, Dr. Terri, this was just a whole, I mean, everybody needs to bookmark this episode, hold onto it just in case, because it is everything you need to know in order to feel better about what is a very difficult situation of having a baby in the NICU.
Terri: Yes, yes, yes, yes.
Nicole: A hundred percent. So just to wrap up, just a couple of quick questions, what do you feel like is the most rewarding part of your work? Maybe you said it already.
Terri: So, the most rewarding part of my job, I would say is meeting a family in the NICU who initially feels hopeless because of a loss of control or because they're overwhelmed by worry or anxiety and helping that family navigate their NICU journey, become empowered and an advocate for their babies. So I used to say, I give families the gift of hope. And so for me, that is the most rewarding part, looking into those eyes and that very first time when I meet them and then seeing them a couple of weeks later, and they're laughing, they're talking, they're telling me about their baby. Just seeing them become empowered, you know, in a situation where they felt hopeless, they gained some hope in a situation where they felt like they had no control, they gained some control. And so that for me is the most rewarding. And then holding, I mean, when you hold a human in your hand, when you hold a human being that can fit in the palm of your hand, you're just like, oh my God. So that, that just never gets old. Even now, 21 years in, I get choked up when a human can fit in my hand.
Nicole: I can't overstate how much I love that you realize the importance of the emotional piece of having a baby and becoming a parent in general. And being able to recognize that as you help moms through a difficult time, it's just so critical. And I'm going to be honest, not all neonatologists are like that.
Terri: Yeah, it's such a big deal. And you know what always say, I had been a pediatrician five years before I had my first child and I had her during training and she just kind of had to get in where she could fit in. Cause we really did not know what we were doing. I had read it, all the stuff in the books, but just becoming a mom, made me realize how much of motherhood is related to intuition. But my second child had colic. He had some special needs and I took my child to the ER. To the moms out there, I was, I had been a pediatrician almost 10 years when I had my son. I took my son to the ER almost every weekend because he would cry from midnight to five, like, okay, something is wrong, something is wrong. I think it needs surgery.
Terri: Can you do an X Ray? Can you look in his ears? He has colic. I'm like, oh my God, all the moms who I have said, look, babies cry. So when I am connecting with the mom in the NICU, I'm very clear on what it's like to feel helpless. I'm very clear what it's like to, to want answers and not be receiving them. And I'm clear about how scary it is to not know what's next. So when my son didn't speak till he was age three, they actually thought he may be autistic. I was told my son would never learn. And that he was unteachable. Now he's nineteen. Now a high school graduate, just finished his first year of college. But in that moment, hearing those words from a healthcare professional, I will never forget what that felt like. So when I meet parents in the NICU, I'll always connect on that level before we even get to the other stuff, because I want them to know, I see them and we're going to navigate this process. Even the families I have to provide hospice for probably in my 20 years, I've received more cards from families whose babies didn't survive or babies who survived because I validated the child for the time they were here, called their child by their name. And that's important.
Nicole: Absolutely. So on the flip side, what is the most frustrating part of your work?
Terri: I think two things. So one of the things that's frustrating for me is, you and I just talked about the emotional connection with families is that for families whose NICU experience was more frustrating or caused them, it's already a lot of emotional duress to have a baby in the NICU, but they have the interaction with the medical team or have the care that is provided, be provided in a way that doesn't make sense to the parent. So it adds to their frustration. That's hard because if you have a baby, that's going to be a three, four or five months and we mess up the first day because you have a girl and we called him a boy, because that happened, the bonding is this weapon. And when you have to have hard conversations, you can't really have them because when it was stuff that was easy, we didn't do a good job.
Terri: So I try to focus really hard on the communication with families, with the medical team, so that we can improve that. So that part is a little frustrating because I feel like parents have to go through so much. So it is our job to try not to add injury to the stress, if we can, 100%. I mean, if we can, I mean, sometimes you just can't, it's the ICU nursery, things are happening. It's an emergency. But I mean, a lot of times we most certainly can, like, I'm going to touch times. If the feed is supposed to be a 10 and mom gets there at 10:05, then we should still let her hold her baby. We shouldn't say, well, you can't do it until one now. I mean, that's not exactly, but the other thing is, you know, I do a lot of perinatal hospice and palliative care and you know, a lot of things happen in the NICU unexpected.
Terri: So that's a very hard part of the job, you know, when things are going really well and a baby's been very stable and they suddenly take a turn for the worst. That's always hard, part of our job, but it's hard, because nobody goes into medicine because they want to see patients die. We didn't write that on our medical school personal statement. I didn't write, I want to see babies die. So, that's a hard part of the job. So, physician/parent communication, trying to help them navigate the lay of the land, our rules and regulations with honoring their role as parents, and then helping families whose babies may not survive.
Nicole: Yeah. Yeah. So what then is your favorite piece of advice to give to expectant or I guess parents who you meet in the NICU, what's your favorite piece of advice to give them?
Terri: My favorite piece of advice to give to parents is the NICU journey is a marathon. It's not a sprint. We are going shift to shift. Don't ask me about next week. No next shift. So if they could just get through this shift, we will worry about the next shift when we can get through this shift. So I usually tell parents to think of the NICU in terms of shift to shift. And the journal, and they find something positive that they can write down every day, even if their baby's having a bad day. Like the best thing that may have happened that day is that the baby pooped and got to change a diaper. We're going to write that down. We celebrate poop in the NICU. So start journaling so that you can be able to reflect on your baby about the milestone.
Terri: So when you got out of the incubator, when you got to do the first bath, when you got to home for the first time, when you got to change the diaper, when you got the IV out, when you took the bottle for the first time. So, but shift to shift because it's very scary to think about, Oh my God, we're going to be here three months, four months, three days. Even if you have a big baby, that's 10 pounds because the mom had diabetes and the baby is only going to be there two weeks. There's still two weeks that the baby didn't come home with you. Two weeks that's different than what you planned for. So shift to shift, day to day, try to remember those five questions. What are you worried about today, doc? Okay, great. If that's all you're worried about today, then I'm not gonna worry about the other stuff either.
Terri: And then find those moments of joy that you can celebrate. They know your voice. I tell the parents and the dads, especially if you talk to your baby while they were in the womb, they recognize your voice in the NICU, that babies will cry in the delivery room and when the dad says, hey baby, or the mom says, hey baby, they stopped crying. Like, Oh, okay. I know that voice. But I know that voice and, you know, touch their fingers and toes, you know, challenge them that their little fingers grab your hand. You can do it. You can do it. It's not what you're playing for, but you can do it.
Nicole: I love it. Love it. Love it. Thank you so much, Dr. Terri, this was such an incredibly informative interview. Where can people find you?
Terri: You can find me at my website www.drterrimd.com. It's the same thing on Facebook, Dr. Terri MD as well as Twitter. On Instagram, it's a little different because there was already a Dr. Terri MD, and she's not a physician, but anyway, so on Instagram, the doctor is spelled out. So @doctorterrimd.
Nicole: Perfect. Thank you so much for coming onto the podcast. Like I said, I mean, this is all the information that I wish I would have known when I had a preterm baby. Just great, perfect information to help the moms, if they ever find themselves in the situation of having a NICU baby.
Terri: Yeah. Oh, so for the moms who...Can I share about my book?
Nicole: Absolutely. Please do.
Terri: Yay. Okay. So for moms who may find themselves in the NICU, I've written a very sharp book that I call introduction to the NICU, it's called Early Arrival: Nine Things Parents Need to Know About Life in the ICU Nursery. A step by step guide. It's only 90 pages. You can read it in one setting. There's a tons of books out there about life in the NICU, but most of them are two, three, 400 pages. And most of them are not easily digestible, but this book is really designed for the moms who I meet on bed rest. The OB has told me that they're going to have a preemie at some point soon, and this is a book that can easily be read in the first week. So it talks about introduction to the NICU, talks about the five questions to ask your neonatologist and it talks about the five main medical issues can happen in those first two weeks.
Nicole: Perfect. Perfect. I did not know that you have that book and that's who it's geared towards. I will be sure to recommend that for moms who are on that bed rest and craving information about what may happen with their baby in the NICU.
Terri: Right? It's the ones craving information that the OB has requested a neonatal consult. So it's very easy read. You can read it in a couple of hours when you get ready.
Nicole: Perfect. Perfect. Well, again, thank you so much for agreeing to come on the podcast. I so appreciate your time and we'll have to have you back. I know there are other things we can talk about as well. I feel like we kind of just scratched the surface. Yeah.
Terri: Thank you for having me. I love your podcast. You're talking to my tribe!
Nicole: Thank you. Thank you. Thank you.
Wasn't that a great episode? You can tell that her passion and commitment to families is deep. I hope all families have a neonatologist like Dr. Terri, if they find their baby in the NICU. Now, after every episode where I have a guest on, I do something called Nicole's notes where I do my top three or four takeaways from the episode. And here are my Nicole's notes from the episode with Dr. Terri Major-Kincade.
Number one, having a baby in the NICU, whether it's for a few hours, a few days or months is hard, plain and simple. It is hard. It is not what anyone expects. You expect to take your baby home with you. You don't expect that you're going to leave the hospital and not have your baby with you, even if your baby's full term and just goes for a short time. You're just not expecting that it's going to happen. When my daughter was in the NICU, I cried just about every day. I finally limited myself to crying three times a day in order to try to help get through it. So just understand that having a baby in the NICU is hard.
Now, point number two, which is kind of a companion to that, is that it is okay, and I would say in fact, necessary to grieve the loss of the experience that you had hoped for, for your birth. So many times people will say, just be happy that you have a healthy baby. So that may happen like after your baby's in the NICU. And you know, things are looking well. People may say things like that, even after you have a full term baby, but the experience didn't go exactly like you wanted, for example, say you ended up getting an epidural and you didn't want to get an epidural initially or say you ended up having a cesarean birth.
It is okay to grieve the loss of the experience that you had hoped for. As Dr. Terri mentioned, you know, one of the first things she says is, I know you don't want to be meeting me. And I know that this is hard and difficult and painful to meet me. And it is okay to give some space and again, necessary to give some space to grieve the loss of the experience that you had hoped for. It doesn't mean that you're not appreciative that things ultimately ended up going well. It just means we're human and you're allowed to feel upset about things. The key is you just don't want that to take away from enjoying the positive moments. So if you find that you are dwelling in that negative space, then you may need to ask for some help to get out of it. But definitely it's okay.
Take some time. If you had a C-section and you weren't anticipating it, if you need to be induced and you weren't anticipating it, if your baby goes to the NICU and you weren't anticipating any of the things that may happen, that you weren't expecting, it's okay to take some time and grieve that loss. And at the same time, be grateful that you're healthy and your baby's healthy.
And then the third point I want to make is that this process of advocating for yourself and your baby and asking questions, the process that Dr. Terri described. This is just the beginning of what it's going to be like as a parent, and really learning to first start advocating for yourself during your pregnancy and your birth that will help you to advocate for your child. So really just get comfortable, start educating yourself, know the information that you need in order to advocate for yourself in your birth. And again, that will help you advocate for your child, not just as a baby, but that's going to be the case throughout your child's entire life.
And I have a great resource to help you get educated so that you're able to advocate for yourself during your birth. That's The Birth Preparation Course. It's my online childbirth education class to ensure you are knowledgeable, prepared, confident, and empowered to have a beautiful birth. You can check that out at www.ncrcoaching.com/enroll.
So that's it for this episode of the podcast, be sure to subscribe to the podcast in Apple podcast, Spotify, wherever you're listening to me right now. And I would love it if you leave a review in Apple podcast, I give shout outs from those reviews on episodes and it helps the show to grow helps other women find the show. I so appreciate them. When you take time to leave that review in Apple podcast in particular also. I know I talked about The Birth Preparation Course, but I also have a free online class on how to make a birth plan. This is great information to help you make your birth wishes. Women love this class. You'll learn two of the most influential factors in your birth and how to ask questions so you understand those two factors. You'll get what to in your birth wishes, how to get your doctors and nurses to pay attention. It's a free on demand class offered every day. You can sign up for that class at www.ncrcoaching.com/register.
Alright, next week on the podcast, it will be a birth story episode. So do come on back next week. And until then, I wish you a beautiful pregnancy and birth. Thanks so much for listening to this episode of the All About Pregnancy & Birth podcast. Head to my website at www.ncrcoaching.com to get even more great info, including free downloadable resources on how to manage pain and labor and warning signs to look out for after birth. You'll also find information on my free online class, on how to make a birth plan, as well as everything you need to know about the birth preparation course. Again, that's www.ncrcoaching.com and I will see you next time.