Maggie McKay (Host): Welcome to the Parent-ish Podcast, where experts at Children's Mercy Kansas City talk about the little everyday things parents experience with their babies, teens, and in-betweens. I'm your host, Maggie McKay. Joining us today is Dr. Amy Knapitsch, Director of Neonatal Follow-Up Clinic; and Dr. Mariana Theodoro, Medical Director of the Small Baby Unit. Thank you both so much for being here today.

Dr. Amy Knapitsch: Thanks for having us.

Dr. Mariana Theodoro: Yes. Thank you.

Host: Dr. Theodoro, when a baby is born early, what should parents expect during the NICU stay?

Dr. Mariana Theodoro: When a baby arrives early, it's completely normal for parents to feel anxious, overwhelmed, or even may perhaps a little lost. Most of us picture a very different ending to pregnancy. And so when things change suddenly, there's often a sense of grief for the loss of the experience that you expected to have in the first place. All of those feelings are human and very normal.

Now, the NICU journey can look very different from baby to baby. And how early a baby is born as well as what complications they face in the NICU is going to really shape their course. One of the things that many parents tell me, and I've seen this over and over, is that the NICU feels like a roller coaster ride. There are good days and there are harder days, and it can be emotionally exhausting. What really matters most is the overall trend for each baby, and our goal is always to support steady progress over time. I often tell families you can't fix prematurity. What we can do is try to support your baby while time, growth, and maturity do the real work. Preterm babies simply need more time outside of the womb to finish what would have happened inside.

One of the questions that I hear all the time from families is, "When will my baby go home?" And instead of a specific date, we really are looking for a set of milestones that show us a baby is ready. These include keeping their temperature while dressed and swaddled just like any other baby without any extra heat sources. And this usually is achieved first for most babies. We're also looking that they're breathing well on their own with very minimal respiratory support, if any at all, as well as feeding well and growing steadily. This is often done with fortified breast milk or formula, as well as being free of significant spells, which are those dips in their heart rate and oxygen saturations that all NICU parents come to know all too well. And these last two milestones actually can take, a significant amount of time to fully develop and so are often the most frustrating period in the NICU for parents because it seems like they're doing so well otherwise. But it's unusual for it to feel like babies aren't making much progress at that point. And most preterm babies won't need any special equipment at home, but there are a few of them who may need to go home on oxygen or a feeding tube. And once the baby meets all of those milestones, then we know that they're ready to go home.

Host: What's often hardest or most surprising about the transition from hospital to home?

Dr. Amy Knapitsch: Obviously, going home is incredibly exciting and families have been waiting for that a long time, but there are definitely some tricky parts of that transition. For a lot of babies, feeding is one of the most overwhelming parts, because premature infants often need to be fed every three hours, similar to a newborn, around the clock, and that will often last for a month or longer after discharge.

They often can be challenging to feed as well. And so, those feedings can be slower than families might expect. It's great if the family's been able to be at the hospital and to do a lot of feeding practice before discharge, but that's not always possible, and even if it has been, it's still an adjustment.

Also, it's scary to bring any baby home, but NICU parents have had a whole team of people around them, and the adjustment to being by themselves can be a lot to process.

Dr. Mariana Theodoro: That's absolutely right. Parents are usually thrilled to finally be able to, be ready to take their baby home, but it's also very normal for a new wave of nervousness to kind of show up at that time. In the NICU, you're surrounded by monitors, alarms, and a whole team watching over your baby, and going home means suddenly relying on your own eyes and instincts, and that can feel really scary at first for parents.

One thing that I remind parents is that you know your baby. You've learned their cues, their rhythms, and their personality, and that intuition is really powerful. The quiet at home can feel strange after weeks of beeping monitors in the NICU, but most families adjust fairly quickly to this. And being involved in your baby's care during the NICU stay, like Dr. Knapitsch said, by feeding, holding, diapering, participating in rounds usually really helps parents feel more confident at home as well.

Now, having said that, we also know that it's not possible for every family to be at the bedside as much as they'd like, and that's okay. You will still learn what you need to know, and your team will make sure you feel prepared before discharge.

Host: Yeah. I remember, it's been many decades, when we brought my son home the first time, and he wasn't even in NICU. Oh my goodness. It is so overwhelming because like you said, you had a team around you, everyone's telling you, you know, what to do and helping you, and then you're on your own. It is so scary. So, I can't even imagine what an added layer would be a baby from NICU. So, how should parents think about milestones and adjusted age in the first year?

Dr. Amy Knapitsch: We expect premature infants to meet their milestones based on their adjusted age, and their adjusted age is how old they would be if they were born on their due date. We give babies credit for that adjusted age for two years, though some babies will be caught up to their actual age peers sooner.

Sometimes parents feel like they're cheating or feel bad about using that adjusted age, but it really is important for having reasonable expectations. It gives us a much better sense of how mature the baby's brain is than their actual age. For example, if a baby is born at about 28 weeks in December but wasn't due until March, then they will probably learn to roll over in July when they're about four months adjusted rather than in March or April.

Host: And what follow-up care or support is typical after a NICU discharge?

Dr. Amy Knapitsch: This varies based on how premature the baby was and their medical needs. In the neonatal follow-up clinic, we follow babies who were born before thirty-two weeks gestation, and we follow them for the first two to three years of life, depending on their specific medical course. That allows us to keep a close eye on growth and development and complications of prematurity and is in addition to the baby's usual pediatrician .Follow-ups.

Babies that were born preterm, but not quite that early may just follow with their pediatrician if there weren't other complications. We also encourage families to enroll with early intervention services, infant-toddler services in Kansas and First Steps in Missouri; for in-home developmental therapies to help, follow along and help them catch up to their actual age peers.

Babies who stayed in the NICU will also need a follow-up hearing test around nine months of age and may need follow-ups with the eye doctor as well. Around age two, premature infants will often have a developmental assessment to help us see how they're progressing.

Host: What signs in the first year are reassuring, and when should parents reach out for help?

Dr. Amy Knapitsch: So as preemies settle in at home and you get kind of your routines and rhythms, we should see them continue to grow and mature. And in general, things should get a little bit easier. Their feeding amounts should increase as they grow, and it should become easier to feed them. Their muscles should start to get stronger and more coordinated. Their breathing should get easier, and their milestones should track along with their adjusted age like we talked about before. If any of those things are getting more difficult, they should definitely reach out to their provider.

Host: And what's the most important thing you want parents of preemies to remember during that first year?

Dr. Amy Knapitsch: I think the most important thing to remember is that the NICU is a really hard place to start your parenting journey. Even after they're discharged home, it's normal for parents of preemies to have more challenges with anxiety and depression as well as the adjustment to any medical needs that their baby might have. Things like medical appointments, birthdays, et cetera, can trigger some challenging memories.

In the best of circumstances, we hope that families have their own family to lean on and friends to talk through some of those feelings, but they should also know that their medical team wants to know about those challenges too.

For families that are followed in our neonatal follow-up clinic, we do have psychologists as part of our team that can meet with our families to provide some of that support. For families that aren't following with us, they can reach out to their own doctor or to their child's doctor for recommendations.

Dr. Mariana Theodoro: I absolutely agree with that. I think the NICU is a very intense place to begin your parenting journey, and those experiences definitely don't disappear the day that you go home. And beyond the support that Dr. Knapitsch, mentioned in our neonatal follow-up clinic, we're very fortunate to have psychologists available to support families while in the NICU as well.

And we also have the POPS program, which stands for Parents Offering Parents Support, where former NICU parents meet with current families. Talking with someone who has walked this path can be incredibly grounding for parents.

The biggest message that I want parents to hear is this: give yourself grace. You've been through something major, and your baby has been through something major. And finding an outlet, whether that's talking with someone, journaling, connecting with other NICU families can really make a huge difference, and you don't have to carry this emotional weight alone

Host: Well, this has been so informative and interesting. Thank you both so much for your time and sharing your expertise today.

Dr. Amy Knapitsch: Thanks for having me.

Dr. Mariana Theodoro: Thank you.

Host: Absolutely. Again, that's Dr. Nathach and Dr. Theodoro. That concludes this episode of the Parent-ish Podcast. For more parenting tips and tricks, visit us at Parent-ish.org, where we help you celebrate the craziness and challenges of parenthood.