The NICU Translated Podcast

Mary Farrelly (00:00)
If you've ever spent time in the NICU, you know the one question that's always in the back of every parent's mind. When can my baby go home? I've heard it a hundred times, sometimes whispered, sometimes asked with tears, and sometimes even asked with a little guilt, like parents think they're not supposed to want to leave yet. But it's a natural question, and today I'm going to break down the factors that influence NICU discharge so you have a clear picture of what needs to happen before that big day arrives.

Hi everybody, welcome back to the NICU Translated Podcast. Today we're gonna dive into all things discharge. The very first question that I often hear from families, maybe even hours, minutes after being admitted to the NICU is when can my baby come home? Because the last thing you wanna do is stay in the NICU for even like a second longer than you have to, but there are often so many unknowns in the NICU discharge process.

You hear in the NICU experience is that the NICU is a roller coaster. There's a lot of ups and a lot of downs and a lot of twists and a lot of turns. But at the end of the day, you get to get off the ride and that is discharge. But there are several things that a baby needs to do to be able to be ready to safely discharge home. So today we're going to go over what those things are and a few things you can do as a family to start preparing for discharge even from the very first day of admission.

So what are the major things that a baby needs to accomplish before being able to go home? Now, I wanted to say first that every NICU is going to have slightly different standards of what their specific discharge requirements are, but these are the general kind of concepts that are at play with most NICU discharges. So I did just want to say that. So if you're in a NICU, it might be slightly different, but these are the major themes. So the first one is that the baby needs to be able to maintain

their temperature without the help of equipment like an isolette, also known as an incubator, or a radiant warmer. So a lot of times babies that are born premature especially or low birth weight, so our tiny friends in the NICU, their bodies just aren't ready to be able to maintain their own temperature even with being dressed and bundled with blankets and hats. So these babies need to be in special equipment. Usually the little ones are in the isolette or incubator where the machine

is really reading the baby's temperature and keeping it in a temperature stable environment that either goes up and down based on the baby's temperature or stays one temperature,

but does not rely on the baby's own capacity for maintaining their temperature. But at discharge, you cannot bring one of those bulky isolates home, so the baby needs to be big enough, strong enough, and developmentally mature enough to be able to stay warm all by themselves. That being said, most NICU babies, especially preemies and the smaller babies, still need a lot of extra support at discharge staying warm, so they might need extra layers of clothes and bundling and just being really thoughtful about ⁓ how your environment at

or even when you're going outside and out and about is when you're going home after discharge. We don't want these babies to get too hot or too cold, just right, kind of like Goldilocks, but this is one of the milestones that a baby needs to accomplish before they're getting ready to go home.

The next is they need to be able to independently or have home safe equipment that they might be needing post discharge. But many babies at discharge will go home on what we call room air, which is just a fancy way of saying they breathe the same air that you and I breathe in a room.

In regular air, oxygen levels are 21%. So a baby that is ready to go home without any equipment needs to be able to not use any oxygen and not need that additional pressure that is often needed or delivered by CPAP or other breathing support. Some babies' lungs or development or medical needs will require them to go home with medical equipment. So this might look like a low flow nasal cannula, which is going to be those two prongs in the nose attached to an oxygen tank.

of like what you might see, you know, grandma at the grocery store with, or some babies need even additional support. And so they may go home with a tracheostomy. So having a surgically placed airway is attached to a home safe ventilator. And we'll touch on some of these different NICU pathways home and future episodes. But in order to go home, they need to be able to either breathe with no additional support or have those two different types of medical equipment that are able to be managed at home because

not all types of breathing support are safe to bring at home. Another thing that many babies need to accomplish before going home is they need to have no events or in some nickies you might hear this called a countdown or spells or apnea brady desats. These are one of the topics we're going to break down in an upcoming episode. What is an apnea and a brady and a desat? But some babies, especially preemies, just simply are not developed enough to remember to breathe all the time. ⁓

so they go through

these little breath holding spells while they'll drop their oxygen, sometimes their heart rate, and occasionally need additional support, especially from the NICU team to come back out of these spells and kind of be like, whoops, whoopsie, forgot to breathe. But we don't want the babies doing this at home. And usually this is maturity. So usually babies that are closer to term, their brainstem that tells their body to take a deep breath when they've held their breath too long is mature enough to continue to breathe. And so they are what we call like cleared from a countdown or a spell. So usually these babies

need to go a certain number of days without having an event to be able to be cleared from this perspective and safe enough for discharge. The next thing that these kiddos need to do is gain weight appropriately. So some babies are able to, you know, come out of their isolate and stay warm on their own, but all of sudden we notice that their weight is dropping. Babies bodies are really busy all the time, even though they might look like they're just sleeping and resting. The inner workings of a baby's body

is doing so much and sometimes they can't multitask, especially when they are premature or had a harder start that needed in a NICU stay So sometimes babies might be able to stay warm, but they're burning so many calories staying warm that then they're not gaining weight. And in order to grow and develop and turn into a bigger baby and a toddler and a preschooler and all the things, we need them to be able to have enough calories to be able to grow and develop. So sometimes even though they're able to stay warm, if they're not gaining weight, they might just not be ready yet and need to go back in an

isolate or have a different heat source for a few more days, sometimes a few more weeks before they're ready to go home again. Same thing with breathing. Sometimes babies are able to breathe without having additional support, but then again, we're noticing that they're not gaining weight or their feeding skills are dropping off. And so those are usually clues that we're just maybe pushing them a little bit too hard, too fast, and they just need a little bit more time to grow, develop, and mature And then usually the next time we try it, they're ready to go.

On

that note, the next thing that babies need to do is they need to be able to eat safely by breast or bottle or have a home safe feeding tube set up. So one of the biggest hurdles to discharge and one of those like hurry up and wait moments for NICU families is the feeding journey. So a lot of times in the beginning of the NICU stay, there's a lot of... ⁓

It's more of that ICU type experience where we're really honing in on safety. The baby maybe has intense medical needs. They're on respiratory support, medications, all the things. And then as the baby's getting closer to discharge, we enter into what is sometimes known in NICU speak as the feeder grower stage. So babies are learning how to eat and they're growing. they're feeder growers, or sometimes you might even hear garden variety preemie, which is also the idea that they're literally growing. They're hanging out in their little NICU.

garden and they're growing. But this can be a really frustrating time because they're oftentimes the only thing that is keeping or seems to be the only thing that's keeping a baby from being able to go home is their oral feeding skills and we're going to talk in future episodes about

the oral feeding journey, cue based feeding, and the practical aspect of feeding a NICU baby. But in order to go home, babies need to be able to have nutrition, whether they're breastfeeding directly, bottle feeding, doing some sort of combo feeding, adding an additional supplementation. So...

They also need to be able to do this and again gain weight at the same time. So feeding for babies is one of the biggest workouts that they do. It is literally like running a marathon. They're burning all their calories. They're using their brain cells. They're doing the thing to be able to eat. So they're burning through more calories and they're consuming in each feed. They again might not be ready to be able to go home yet. They might need a little bit more time to grow and develop in their NICU garden before they're safely ready to go home. Some babies for different reasons.

whether it's developmentally or anatomically, ⁓ are not able to transition to having enough calories by bottle feeding or breastfeeding. And some babies may go home from the NICU on a feeding tube. So some babies may need to have a surgically placed feeding tube, usually called a G-tube, or some babies have a G-J tube, G being gastric place tube, so it's a little kind of button in their stomach where the food can be directly attached to a feeding tube and feeding pump.

entered into the baby's body that way. Some babies and some NICUs, depending on the program, the needs and the resources, will send a baby home on an NG tube or nasal gastric tube, which we're going to have another episode explaining all things NG and G tube upcoming as well. So some babies may not need to take all food by breast or bottle, but most do. And I just want to acknowledge that this can be a really ⁓ mind game part of the NICU journey.

Because if there was some manual that we could give to a baby and say, here baby, please read this book about how to suck and swallow and breathe and coordinate it all and do it all effectively and safely and please read this quickly and so we can go home. If that existed, that would be incredible. But we really just have to with all things discharge, be really, really patient, thoughtful and curious and supportive of that baby's unique journey because they are unique. One thing that we say

families of preemies especially when we are asked in the early days of when can a baby go home you might hear people say they'll likely go home at or around their due date and so if a baby is born at 34 weeks that's six weeks before their due date so the idea is they likely will spend six weeks in the NICU. That being said babies don't follow the rules they truly don't they do what they want when they want and we're just along for the journey. So it can

can be a frame of reference for families and some babies do follow the rules and go home right on their due date, ⁓ but most do not. Some go home before, some go home days after, weeks after, months after. So I usually suggest to families, especially for those babies that are born very early and have a longer NICU road ahead of them, to plan for a very long NICU stay so then if your home earlier is exciting and a fun twist rather than hoping for this short,

sweet

NICU stay and then when it's longer and longer, it can feel really discouraging and frustrating. So I like to kind of flip the switch and say, plan in your head you're going to be here a long time and then if you go home early, then great. And if you stay for the long time, you've kind of mentally prepared yourself for that possibility because again, we here at the service of the babies. The babies are making the rules and deciding if and when and how they're ready to be discharged. Another piece of the puzzle is completing discharge teaching and testing.

Many NICUs will have a discharge checklist. So even if you're early on in your NICU stay, it can be helpful to know what is on that discharge checklist. You can have an idea of what milestones and kind of boxes that literally need to be checked before the baby can go home. Oftentimes in the NICU, this is going to look like a lot of teaching for families. One of the silver linings of a NICU stay is you have often a lot of extra time and support and education on how to care for.

newborns and especially a preemie or newborn NICU baby. So you have a lot more time to learn and process and ask questions and really get to know your baby's unique schedule, care plans, nutritional needs, and other kind of nuances and quirks of your baby before you take them home. So that is the like silver lining of a NICU site. But many NICUs have a pretty substantial checklist of things that need to be done and they do vary depending on where you

are in the world. Some of this testing that you might see is a car seat test.

Many NICUs, but not all, require a car seat test where a baby that is born usually less than 36 weeks and or less than six pounds, again, depending on where you are, some NICUs are not doing car seat tests at all anymore. The evidence is kind of mixed on this, but many still follow the car seat testing rule. So the baby will sit in a car seat for a specific period of time, usually between one and two hours when they're close to discharge to make sure that the position of the baby in the car seat doesn't make

it so that they're having a hard time breathing. So sometimes because babies, especially preemies, tend to be fairly small and a little bit on floppier side, they don't always able to kind of keep their airway open, keep themselves in that nice sniffing position and can kind of slump down in a way that makes it so that they can't exchange oxygen as well. So we'll watch them in the car seat on the monitor to make sure they're not dropping their oxygen levels or heart rate numbers at all. So that is another thing that many babies, but not all, will have as part of their NICU journey.

Oftentimes there's also a lot of videos and different skills that that parents need to demonstrate and then on the actual day of discharge, there's the practical Bring an outfit for the baby to go home in making sure you have some NICU's make you bring in your ID or have different types of paperwork that you need to sign so knowing what's to come can be really helpful so that on the day of discharge it's not always a scramble because something that can happen and that I've seen often as a NICU nurse is that

the discharge day oftentimes can come up and sneak up on people very quickly. It might seem like the baby, you know, is not doing super great on feeds, maybe they're stuck at kind of 50-50, able to take some but not, and then they're tired and then all of a sudden, this is not always but often, the baby developmentally is ready. They just are ready. We call it sometimes the light bulb going off. So sometimes babies go from just okay feeders to being totally fine and independent seemingly overnight. And so then you might get a call and

be

like your baby's ready to go home tomorrow and you need to be able to say okay let's do this and oftentimes this means making sure that you have all the equipment and gear ready to go home and especially that car seat with the base installed in your car and making sure that the car seat is an appropriate size one for the weight of your baby because depending on how big they are they may or may not fit in the car seat that you have or that you want so definitely double check and make sure that the manufacturer states that

is appropriate for that baby's for your unique baby's weight.

What are some other things that needs to happen for discharge? It really depends on the different needs of the baby going home. So if your baby is going home with some extra pieces of the NICU with them, so maybe they're going home on different medications with different medical equipment, you'll likely be coordinating closely with the NICU case management team and home health programs and outpatient pharmacy to make sure that you have the right gear, tools, resources, phone numbers, equipment to be able to make that transition

home smoothly. Some NICUs also require having parents have CPR. Others suggest that. Some have in-unit classes. Others have videos that you can watch so that you can feel more prepared in case of an emergency that you know what to do with your baby. But in the meantime, even if it feels like NICU discharge is days, weeks, months away, which it can be, some babies go for a longer or in the NICU for a much longer period of time, we like to say in the

that discharge planning starts on the day of admission. So what does that, you're like great, what does that mean? What this really means is getting to know and diving into the hands-on care of your baby as you're physically able, because we know in the early days families just gave birth and there's a lot of physical and emotional needs ⁓ of the family that we need to respect and think through too. But as you're able to learn and take part and kind of get your routine set up in the NICU life, you really need to start

thinking about what is this going to look like at home because what I see for lot of families is they get really really used to NICU life so they're used to having a nurse right behind them what is this what do think about this poop

What do you think about this speed? What should I do about XYZ? At home, you're likely not going to have that same type of immediate access to somebody who can help guide you, offer advice, and answer questions. Unless you have a NICU doula, but that's another topic for another day. So you really want to be able to read your baby's cues and be able to take care of your baby without that additional support, especially of the monitors too. Another thing that I see from families is, well, especially what we're learning

feeds, families are staring at the number, staring at the monitor and not able to really focus and hone in on their baby. So even if the baby is learning to feed, maybe has a little breath holding spell, kind of spit up moment during a feed, we really need to know what the baby looks like during that and not just the monitor. So you need to know if the baby's desatting and is satting, you know, 85.

we wanna know what does that look like on your baby because at home they might still have these little weird feeding moments and you need to be able to know what that looks like so that you can use those same skills and tools that you learned in the NICU from your care team at home. ⁓

You also want to know from your nurse kind of like what are the different milestones that we're working on this week. It can be helpful to kind of have an idea, especially for preemies on what developmental progress looks like in a baby because they literally are developing before our eyes. A 33 week baby in the NICU is going to have a different skills and next steps and goals for care than they do the next week when they're 34 weeks. If you take a picture of your baby every day in the NICU, even from a Monday to a Friday,

they're going to drastically grow and develop and all of a sudden you'll be like, oh, they have a chunky roll on their on their little leg that I didn't see before. So it can be helpful to kind of know where you're at so you can tentatively start thinking about where you're going. You want to be able to gently plan for the future while also acknowledging that, again, we are at the mercy of the baby's needs and guidelines. Sometimes NICU discharge days can move a lot. Sometimes you might have had that phone call and says, OK, you're ready. The baby's going to go home tomorrow.

And then you get a call six hours later that said, you know what? They actually had an event with their feed. I don't think they're ready yet. We're going to hang on and watch them for another week even. So having that again, flexibility and mindset that this is a journey and that the NICU is only the beginning. It is just day one and there's a whole nother chapter beyond that in life after NICU. So the best thing you can do is focus on today, stay engaged, keep learning, learning your baby's cues and

unique needs so that when you are ready to go home, you have everything you need and a deep understanding of your baby's care so that you can step into that role as an advocate and really truly thrive at home. So asking when can my baby go home isn't just about another day on the calendar. It's about truly wanting to start your life together outside of the hospital. And that day will come. The more you understand about the steps to get there, the more you can celebrate each little victory along the way because the NICU is only the beginning.

and together we can make this journey a lot less overwhelming and a lot more empowering. NICU love. Love, Mary.