October 28, 2022
Preterm birth affects approximately 1 of every 10 infants born in the United States, and almost all of those infants will end up spending time in a neonatal intensive care unit or NICU. For many, this involves several days of infants receiving care in a hospital, with parents unable to take their babies home, disrupting their family and work life. Often the first question families ask their NICU care teams is, “When can I go home?” Recently, Children’s Minnesota launched the Children’s Home Application-based Monitoring Program, which is a one-of-it’s-kind program in Minnesota that allows infants that qualify to receive expert care and monitoring by the baby’s neonatal care time at home, with overwhelmingly positive results. Here to discuss that program is Dr. Cristina Miller, one of our kid experts in neonatology and the medical director of the NICU follow up program.
Dr. Angela Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to The Kid Experts, where the complex is our every day. Each week, we bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas and practical tips will surprise, challenge and perhaps change how you care for kids.
Welcome to Talking Pediatrics. I’m your host, Dr. Angela Kade Goepferd. Pre-term birth affects approximately one out of every 10 infants born in the United States, and almost all of those infants will end up spending some time in a neonatal intensive care unit or NICU. For many babies and parents, this involves several days of infants receiving care in the hospital with parents unable to take their babies home, disrupted family life, and disrupted work life. Often the first question families ask their NICU care team is, when can I go home? Recently, Children’s Minnesota launched the Children’s Home Application based monitoring program, which is a one of its kind program in Minnesota that allows infants that qualify to receive expert care and monitoring by the baby’s neonatal care team in their home with overwhelmingly positive results. Here to discuss that program more today is Dr. Christina Miller, one of our kid experts in neonatology, and the medical director of the NICU follow-up program. Christina, thanks for joining me today.
Dr. Cristina Miller: Thanks for having me, Angela.
Dr. Angela Kade Goepferd: So before we jump into talking about the NICU and babies and how we can take care of them at home, I’d love for our clinical audience to learn a little bit more about you. So tell me why you’re so passionate about neonatology and how you ended up in this field.
Dr. Cristina Miller: I probably, like many pediatricians knew as I went to medical school, I wanted to do pediatrics. I saw myself taking care of kids, and that’s what I knew. And then as I explored residency, I just felt very comfortable in the NICU. It was just my happy place where I felt like I got this, I can do these procedures, I can manage these diagnoses, and then I can form these relationships with these families who are really experiencing some of the worst times in their life, and it’s often sudden, and I felt like I could navigate that and I could help in that arena.
Dr. Angela Kade Goepferd: You in particular have a specialization in really managing infants post-discharge, and you’re the medical director of the NICU follow-up program. So what about that part of the care do you love?
Dr. Cristina Miller: Yeah, so in fellowship we spend a lot of time training right in the ICU and how to take care of these critically ill babies. And I really got this curiosity of like, well, that’s great. I can run a code, I can put in a chest tube, but what happens in 10 years, what happens in five years? And I was fortunate in my program to have a really robust NICU follow-up program and research going on, so I got to join in some of that long-term research. So in fellowship, I did my research on 21 year olds and really just felt like, well, wow, this is my niche. This is what I want to focus on because the care that we provide doesn’t and shouldn’t end at discharge. That’s the beginning of the story and now it’s our job to help these kids now navigate, especially those first few years of childhood because that’s really when so much development happens and kind of helping those families navigate that piece has been rewarding for me.
Dr. Angela Kade Goepferd: So as you mentioned the beginning part of the story, for me, and I think a lot of pediatricians and other pediatric clinicians who are in practice, we only got to see the beginning of the story in our training. We were in the NICU with those tiny babies who were critically ill and hooked up to ventilators, and some of them didn’t do that great. And we didn’t really have the benefit of seeing them in follow up clinic or like you do. So what would you want to share with us about the spectrum of your work that we maybe didn’t get to see in our training?
Dr. Cristina Miller: Yeah, that’s a common question from trainees and also from our nursing staff because they are in the thick of it and seeing the worst of it and holding parents’ hands through deaths and through horrible diagnoses and they don’t then get to see what I get to see, right? Is when that kid is five and they are running into the office and high-fiving me and that family I told your child probably isn’t going to survive, and here they are and they’re telling me about what they’re going to do in kindergarten.
So that bridge piece really gives me a lot of career satisfaction and I know that that piece is missing for both our nursing staff and a lot of our trainees. So we try to do a lot of wraparound where we get those stories back to our nurses and back to our trainees. We do these all about me pages where we try to give updates. But the takeaway is that most of these kids do phenomenal and do better than we think that they would have. We try a ton to prepare families for this could be scary, these children could have delays, this could happen. So we try to prepare families for that. But for the most part, there’s so much hope and there’s so much outcomes that are phenomenal that even if a child isn’t 100% developmentally at their same age group, they are still having a high quality of life. They are going to school, they are being enjoyed by their family and bringing joy.
Dr. Angela Kade Goepferd: Let’s talk a little bit more about the home monitoring program. As I mentioned in my intro, most families when they get to the NICU want to know, when can I go home? One of my sons was in the NICU for eight days and every day that was our first question in the morning was when can we go home? So can you describe this home monitoring program for us, and what it entails?
Dr. Cristina Miller: Yeah, so like a lot of medicine, especially in adult medicine, there is this movement to value-based care and what kind of care can we deliver outside the hospital and what’s safe to do so? And there’s been some research that’s been going on with home nursing programs, especially out of the United States, that having a feeding tube at home is actually pretty safe, and it’s actually safer than even having a G-tube, less complications, less risks, and readmissions. So we wanted to focus just on that population. It’s a studied population already that we know that this is something that can safely happen at home. And then the question becomes like, well, then how do we deliver that care? A lot of these studies are done in other countries where there’s a different mechanism for medicine and there’s home nursing networks and things like that.
Dr. Angela Kade Goepferd: Sure.
Dr. Cristina Miller: So how can we lean on virtual care and application based care and all these technologies so that we can continue to be part of that family’s care team when they’re home.
Dr. Angela Kade Goepferd: So what babies would qualify for a program like this? You mentioned the feeding tube, but how would a baby might qualify for the home base monitoring?
Dr. Cristina Miller: So we tend to look at babies when they’re in their NICU stay if they are an uncomplicated premature baby who is just focusing on really getting that feeding aspect down. So we wait until babies are corrected to 35 weeks. So it doesn’t matter how early they were born, but at least being 35 weeks at discharge because they’re already having those emerging feeding cues. And our speech and rehab team can evaluate them and say, yep, they’ve got an immature feeding pattern, but no pathology. We choose children who are otherwise not a lot of other medical problems, so they’re not on oxygen, they’re not having apnea bradycardia, no other big issues going on with them. And then the families have to want to participate in the program and not everybody does.
Dr. Angela Kade Goepferd: Sure.
Dr. Cristina Miller: So we approach all families and give this as an option, but a lot of families say, ooh, that sounds scary, I don’t want to do that. And that is perfectly okay.
Dr. Angela Kade Goepferd: Yeah, I mean, one of the things you mentioned was in other countries they might have a more robust public health infrastructure that we just don’t have necessarily here. So I was curious about the parent aspect of it. And obviously parents need to be comfortable with it. Does it matter geographically where a family lives or what type of insurance they have if they can qualify for the program?
Dr. Cristina Miller: Yeah. So, right now, because we utilize our children’s home health nursing to replace those feeding tubes if they come out or to check on those feeding tubes as needed, the family does need to live within that home nursing radius. So it’s about 30 miles from either St. Paul or Minneapolis campus and within the state of Minnesota. And then insurance wise, all insurance companies essentially cover durable medical equipment or DME, but they would have to cover that so the family isn’t seeing any out-of-pocket costs.
Dr. Angela Kade Goepferd: This may seem intuitive, but let’s talk through a little bit why this would be such a benefit for families. Obviously, many families want to go home, some are uncomfortable with taking a medically complex child home, but what benefits do you see to families of being able to participate in a program like this?
Dr. Cristina Miller: There’s lots of high level benefits, and then there’s just the small things of the family doesn’t have to pay for parking every day. They don’t have to drive in and commute here to see their child, but the big things are their baby can meet their siblings and grandparents, especially as our visitation restrictions have waxed and waned. There’s been times where we couldn’t have other visitors. So getting to be at home is some of those just tangible things. And then bonding. It’s much easier for a mom to breastfeed in her bedroom in the comfort of her home than here in the NICU, in this environment where everyone’s there and there’re loud noises and there’s a lot of stress for a mom who’s in the NICU. So to be at home seems like that goes well as well.
Dr. Angela Kade Goepferd: So, in terms of measuring outcomes, what differences and outcomes did you see with babies who were able to participate in a home monitoring program like this or were not?
Dr. Cristina Miller: So when we did our research project, it was a pilot study. So we took 20 babies who participated in this pilot and we compared them to 56 control patients, historical controls. And really we were looking for feasibility. Is this feasible? Are there any readmissions? How can we deliver this care? What does this look like in our healthcare system? And it was very positive that it worked well. We found when we compared the groups, and now it’s not powered for this, but we found that the babies who went home with the home base monitoring program shaved about a week off their hospital stay. They shaved about a day off their time to full oral feeds, which means they got to their full feedings and got the NG-tube out faster than the babies who stayed at home. I think the reasoning why there is probably they just have that consistent feeder at home.
Dr. Angela Kade Goepferd: Sure.
Dr. Cristina Miller: Being their parents versus when you’re here in the hospital, we have lots of nursing changes and shift changes and all of that. So I think that’s why there’s that difference.
Dr. Angela Kade Goepferd: So for those of us who might be caring for these babies in the community and they’re coming home on a program like this, it sounds like what you have set up is kind of a home nursing infrastructure, some tools and technology that get sent home with a family to communicate with the care team. What role, if any, is there for us who are out in the community caring for kids who might be a part of this program?
Dr. Cristina Miller: So anybody who discharges on the program, their primary care system will be contacted the same as anybody who discharges from the hospital. We still ask those patients to make an appointment with their pediatrician a few days after discharge. So pediatricians might see families coming into the office and those NG-tubes are still in place. We communicate daily and trying to fax over our notes and our visits of when we’re progressing and getting that feeding tube out. And then we always ask the pediatrician to see the family back again two weeks after the feeding tube came out to do another check in just to make sure things are continuing to go well.
So if there’re any questions, we are happy to through the follow-up clinic, talk to pediatricians out in the community who are helping partner and care for these kiddos. I have a bunch of pediatricians who even these kids are, I think nine months old now, we still are connected and talk frequently about how their growth is going and how things are going. So if there’re any questions, the pediatrician is worried, maybe that feeding tube came out too early or maybe the kiddo wasn’t growing the way that they would like and we’re happy to continue to partner after they’re discharged from the program.
Dr. Angela Kade Goepferd: And in terms of those feeding tubes, what if they come out at home? Is that something that families are taught to replace? Would they need to come into their local primary care office to get those replaced? How would they do that?
Dr. Cristina Miller: So it’s pretty slick with children’s home nursing. So they come out and replace them, and they do that seven days a week. So even on the weekends, they won’t come out at 3:00 AM So that’s why our kids have to be able to take a little bit by mouth to make it through, but the families aren’t trained to replace them, and there’s no expectation that the pediatrician offices would replace them. And we really wanted to keep the kids out of coming into the ER, which is why we did this partnership with home nursing, and that’s been working out really well.
Dr. Angela Kade Goepferd: So, I’m thinking this program sounds really great. We’ve got the babies that are able to go home with their families sooner, their outcomes in terms of ability to feed sooner and breastfeed well seem to be better compared to their peers that stay in the hospital. This sounds like something that would benefit a lot of kids, whether it’s at our hospital here at Children’s, other hospitals in other states and other places. What would you say are key components to the success of a program like this? If someone’s listening in North Carolina and they want to start a program like this out of their NICU, what would be key components of success?
Dr. Cristina Miller: Yeah. There’s a lot of programs like this that are popping up around the country and those of us who are doing it are all working together. So I worked with a doc at UVA and she gave me advice and gave me components of her program to build this one. A doc in Oregon contacted me and we built up there. So there’s always that opportunity to network. And so I would say the first thing would be to reach out to a center who’s already doing it, because none of us are keeping this a secret. We want this to grow. We want other hospitals to start doing things like this. So partnering and connecting with another hospital who’s already doing it, having an infrastructure of that home nursing really seems like that makes things go more smoothly. And then of course, you’re in-patient getting just a core group of nurses and physicians who are going to be just your champions for it and who are going to really be excited about it and want to teach families about it and move it forward has been a big component too.
Dr. Angela Kade Goepferd: Well, before I let you go, it’s rare that I get to sit down with a kid expert neonatologist and ask questions. And one of the things that I want to make sure that those folks taking care of kids who are former NICU grads know is you mentioned those critical first few months and first few years of life. What are the things that we should make sure that we are doing in primary care offices to make sure that these kids are successful?
Dr. Cristina Miller: I think the biggest things that we look for in the NICU follow-up clinic, and we have checkpoints on our nutrition and growth is huge. So often we discharge babies on a high calorie formula when to switch that and making sure they stay on their curve and they’re not overshooting, they’re not undershooting, staying on that nutrition is super important. And then the other big thing is just their development, making sure they’re enrolled and help me grow. Almost all of our NICU graduates are eligible for help me grow. And we refer that at discharge, making sure the family followed up and took that step to enroll, making sure their hearing and their vision are checked at regular intervals. We also check on that in NICU develop clinic, but the pediatricians and family practice docs are the frontline and they’re the ones who are seeing those kiddos with frequency. So I think those are big things that we can all work together to try to move along and get those check-ins done.
Dr. Angela Kade Goepferd: One quick follow-up question about the feeding and the calories. So one thing that I’ve seen in my practice is that parents get so honed in on I have to feed my baby every X amount of hours and I have to give them this high calorie formula. And sometimes we do see babies starting to over correct on their weight. So can you run through just some quick guidelines for us on how and when we should be making those transitions and helping parents relax off of that regimented feeding schedule?
Dr. Cristina Miller: So typically we take babies off a higher calorie formula when they’ve achieved “catch up growth”. And what that means is they’ve hit the 10th percentile or better on their growth curve corrected. And when they’ve done that, okay, you’re on the curve, let’s see what you do without this extra fortifier. And sometimes they come off of it and need to go back on it or we need to add other higher calorie things as they start solids. For the most part, that’s a good barometer. And then of course, that for the families who are hesitant to let go of it and are overgrowing their children, I think most of that is just around reassurance. Your baby’s normal, your baby’s okay, you can let them sleep through the night. I have parents who come in sometimes at the six month check up and they’re still waking their baby up every two to three hours.
I’m like, oh gosh, they need sleep and you need sleep. Stop waking them up. They’re at the 90th percentile. So I think it’s just a lot of reassurance because there’s trauma there for those parents. There is post-traumatic stress and trauma that they haven’t even begun to deal with because they’re still sleep deprived. And I think a lot of that reassurance, which is hard because in a short well visit pediatricians and family practice acts really don’t have time to have a psychology session. But I think getting those referrals, getting parents referred for therapy is really, really important too. And we try to do that at our follow-up clinic.
Dr. Angela Kade Goepferd: So we’re about to close up. Just any last things that you’d like to share with us. We started by sharing some stories of kids who are really successful as they come out of the NICU. We’re obviously caring for these kids for the rest of their lives. Any hints or tips that you’d like to give us as we care for your former patients into their childhood and young adulthood?
Dr. Cristina Miller: The biggest thing to take away is that it doesn’t really matter to some degree what happened in the NICU. It doesn’t matter what that baby’s huddled for look like. It doesn’t matter how long they were on a ventilator. The thing that matters most in study after study is what happened next? And did you have parents who were engaged and read to you? Did you have parents that involved you in help me grow and kept on top of your development? Did you have parents who brought you to your well visits? All of those things matter so much. And so I think especially as we’re trying to bridge gaps in equity and different populations in Minnesota, I think really ramping up and empowering parents that it doesn’t matter what happens so far. Right?
Dr. Angela Kade Goepferd: Yeah.
Dr. Cristina Miller: You’ve got this. Let’s get you to the next spot.
Dr. Angela Kade Goepferd: We all start out different places at the starting line, but it doesn’t mean we can’t all get to the finish line with flying colors. So yeah. Thank you so much for that reminder. Well, thanks again for joining me today.
Dr. Cristina Miller: Thank you.
Dr. Angela Kade Goepferd: Thank you for joining us for Talking Pediatrics. Come back each week for a new episode with our caregivers and experts in pediatric health. Our executive producer and showrunner is Ilze Vogel. Episodes are engineered, produced, and edited by Jake Beaver. Amy Juba is our marketing representative. For more information and additional episodes, visit us at childrensmn.org/talkingpediatrics, and to rate and review our show, please go to childrensmn.org/survey.