 This episode was prerecorded as part of a live continuing education webinar. On-demand CEUs are still available for this presentation through all CEUs. Register at allceus.com slash counselor toolbox. Hi, everybody, and welcome to today's video on working with parents with premature infants. Now, a lot of what we're going to talk about today can be applied to parents who have infants with disabilities, but we're really going to focus on the unique situation with preemie parents and life in the neonatal intensive care unit, also known as the NICU. We're going to start by reviewing some medical issues for premies. Now, while we're not doctors, it's important for us to understand a little bit about the diagnosis that some of our parent's children may have and what they're dealing with. So I'm going to hit some of the highlights here and I'm going to refer you to resources where you can find more diagnoses. That keeps parents from having to try to explain what's going on to you, and that also helps you to be able to provide some perspective sometimes on some of the things that are going on, because they may not have gotten all of the information they need. And I'm going to give you some tips and tidbits based on my experience having two children that were preemie and in the NICU that might help you kind of work through this. We'll discuss life in the NICU, explore the range of feelings for NICU families, and having a child in the neonatal intensive care unit really does impact the entire family. We'll identify strategies to help the family bond with babies, explore parenting under the microscope, because when you're in the NICU, you are kind of in a fishbowl, and identify methods for easing discharge anxieties. And for a lot of us who've had premies and when they're in the NICU, there are generally issues that happen. So feeling confident and able to handle those issues when you don't have a nurse literally an arms reach away can be really anxiety provoking. So we'll talk about some things to do there too. So this is a picture of my little wookie man. He was born at 29 weeks. You can see he was a little bit of a thing. He was just under three pounds. Now I know some really good friends who've had 24 week old babies. A lot of times parents who are women who have multiples may have their children a little earlier. One of my friends had twins that were very, very premature. They were born at 24 and a half weeks and they were each under two pounds, but they both survived and thrived without any really major medical issues, which was awesome. It was a miracle, but it was awesome. So let's talk about some health problems that may affect premies because basically the premature infant has come out before they're finished developing. And sometimes in the NICU we refer to it as cooking because they're put back in the incubator to cook a little bit longer. And one of the things that can happen is they can have some unique health issues. One is called an intraventricular hemorrhage. This is bleeding in the brain and it usually happens near the ventricles in the center of the brain. And the ventricles is a space in the brain that's filled with fluid. This is bad. You know, this is something, this is one of the kind of worst case scenario things because it puts pressure on the infant's brain. Now is it a death sentence? Not necessarily, but it can cause a lot of problems. So this is one of the things that they will look at really closely in premature infants. Patenductis arteriosus is a heart problem that happens in the connection between two major blood vessels, which can cause breathing problems or heart failure. You know, if the heart hasn't fully formed, finished forming yet, or if it didn't form well in utero, then this can happen. Necrotizing enterocolitis is a problem with the baby's intestines. Colitis means in the colons and inflammation of the colons. It can cause feeding problems, a swollen belly and diarrhea. And sometimes happens two to three weeks after a premature birth. You know, the body wasn't really ready to start taking in solids yet, let alone breathe air. So it can cause problems in the intestines. Is this always, you know, a huge problem? No, you know, these are just some things that can happen and that parents may need to deal with. Retinopathy of prematurity is an abnormal growth of blood vessels in the eye and can lead to vision loss. Something else just to be aware of if they start having, you know, bloodshot eyes, blood vessels that are growing in the eyes. That can be because of prematurity. Anemia can happen when the baby doesn't have enough healthy red blood cells to carry oxygen to the rest of the body. The system wasn't quite finished forming yet, so it's not uncommon. Now, does that mean they're always going to be anemic? No, you know, once the body is up and functioning and fully developed, you know, a lot of times it will start producing plenty of red blood cells and anemia won't be a problem. But during this initial prematurity phase, so up until the time where the baby was supposed to be born, there are at a greater risk for a lot of problems. Jaundice, and jaundice is when a baby's eyes and skin look yellow. A baby has jaundice when its liver isn't fully developed or isn't working well. It's important to recognize and realize, and this is one of the things the nurses told us, that most premies are going to become jaundiced at some point because the liver was just not ready to handle, you know, everything yet. And it's not a big deal. They put them under what are called billy lights, it's light therapy. And, you know, sometimes it's for a day, sometimes it's for a week. It doesn't hurt, you know, the treatment doesn't hurt them at all. You can see my little guy is basking like he's on the beach somewhere. They cover their little eyes so, you know, the lights don't hurt their eyes. But generally it resolves and resolves without incident and there are no further liver problems. So a lot of times when people think of jaundice, they think of the jaundice people get when they've got hepatitis or alcoholism, cirrhosis of the liver or something really bad that can be permanent. In premature infants, it's just kind of one of those things that most of the time is going to happen. And it'll work through treatment and the baby will be just fine after that. Apnea caused by prematurity can happen and it's abbreviated AOP, apnea of prematurity. The part of the brain that controls the drive to breathe doesn't remember to take a breath. These breathing abnormalities may begin for about two days after the child is born and last for up to two to three months after birth. But it generally does resolve. The first line of treatment for apnea is simply stimulating the baby to help him or her remember to breathe. This can mean rubbing the baby's back or tapping their feet. When Sean would try to eat, you know, he would drink from a bottle, he wasn't strong enough to nurse. But when he was feeding, he would forget to breathe and we would see him kind of slow down on his suckling and his little lips would start to turn blue and we'd have to rub his back and tap his feet and then he'd remember to breathe again. And yeah, that freaked me out at that point in time. But it's important for parents to understand that apnea caused by prematurity is very, very common. And, you know, generally it's just stimulating the baby being aware of what's going on and reminding them to breathe. Sometimes if it's really bad or if the baby is really, really premature, you may have to limit interaction time with the baby to prevent overstimulation because when they get overstimulated, whether it's through feeding or through being held or whatever, they may forget to breathe. And this can be really hard on parents to have the child in the incubator or in the big boy bed, wherever they're at, where they're not allowed to touch the child or they're not allowed to take the child out and hold him or her. And it can be really frustrating because the parents are just kind of sitting there. A lot of times you can reach into the incubator and you can hold their little hand or something. But, you know, like I said, sometimes it's so bad that you just can't even touch the baby. And this is usually when a child is at a level 3 NICU, they're really struggling to make it through. By the time they get down to a level 2 NICU, which is a lower level of intensity, most of the time you can at least reach your hand into the incubator and, you know, hold on to baby's hand a little bit or something. Apnea prematurity usually ends on its own with time. And this is something we need to keep reminding parents. Healthy infants who have had apnea prematurity usually do not go on to have more health or developmental problems than other babies. It's just that part of their brain hadn't fully developed yet. We had to let it finish solidifying. Apnea prematurity does not cause brain damage. And a healthy baby who's apnea free for a week will probably never have apnea of prematurity again. This is something I wish they would have told me because when they sent my son home from the hospital, the whole goal for discharge was that he was apnea free for a week. And once they accomplished that, they said, OK, he can go home. And I'm freaking out thinking that he's going to have another episode once he gets home because they didn't tell me that, you know, once they get through a week without having an episode, they're probably never going to have one again. That would have made me feel more comfortable. So, you know, some of this stuff, any of these rules that come out or any of these things, you want to have the parent ask the doctor about because it may be different for a particular child. But if the child was having apnea episodes, have them ask the doctor, you know, if my child is apnea free for a week, does that mean that he or she is probably in the clear? And the doctor can answer it based on that particular child, you know. Each individual is going to be unique and premies are so fragile in some ways and so resilient in other ways that we can't make sweeping generalizations about anything. But we can give you kind of the odds, you know, most of the time this happens. But it's always important to encourage the parent to have an open dialogue with the neonatal staff. Respiratory distress syndrome is a breathing problem caused because the baby doesn't have a surfactant or something that keeps it slippery, that keeps the small air sacs in the lungs from collapsing. My daughter had this when she was first born. She wasn't ready to be out yet and she wasn't ready to breathe. And it took them a while to get her to breathe like more than five minutes because she didn't have that surfactant in her lungs so she couldn't, you know, move the air in and out. Thankfully, she quickly got over that in a few days. She was doing a lot better. But respiratory distress syndrome can be really scary. So it's something that parents need to be aware of. Bronchial pulmonary dysplasia is a lung condition that can develop in premature infants as well as babies who've had treatment with a breathing machine. Babies with BPD sometimes develop fluid in the lungs, scarring and lung damage. This is a big risk if the preemie is on a breathing machine. And we were very blessed that even though my son was 29 weeks, he didn't have to be on a breathing machine so we didn't risk lung scarring. Does it always happen? No. But there is a risk of lung problems if a child has to be on a breathing machine and the longer they're on it, the greater the risk. Infections. Premature babies often have trouble fighting off germs because their immune systems are not fully formed. Infections that may affect a premature baby include pneumonia, sepsis, meningitis, as well as other things. And it's not, my experience is, it's not just while they're in the NICU that they are more susceptible. Our pediatrician recommended that our children didn't start daycare until they were at least 18 months old to give their immune systems a chance to catch up. There's another virus called RSV and I believe it's respiratory synaptic virus. But RSV, if preemies get it, can cause long-term problems in their breathing and it's more, it's basically like bronchitis but it can cause long-term problems. So being aware of these things is important. And it's important for parents of preemies to be aware of the additional risks because of the lowered immune system and stuff, especially if they've got other children at home. Other children will need to make sure that even after a baby comes home that they're doing a really good job washing their hands before they touch baby and they're not coughing on it. Other diagnoses that are common in preemies can be found at kidshealth.org. You can click on that link and, you know, find more information. So NICU life. Now this is a level, let's see, where were we here? This was the level three NICU. So, you know, when you walk into a level three NICU, there are machines, beeping, cords, wires, tubes everywhere. And it's just this little rows, row after row of incubators. You know, in a level three NICU, the children are really very ill or very premature as the case may be. So you walk in there and it's shocking, especially if you haven't been around it before, to see all this stuff and see your little person hooked up to all this stuff. The NICU is a wealth of sensory input. Machines have unique operating noises and alarms that may frighten people or make them feel something's not right with your baby. Because things will go off if a sensor slips off their little finger or gets out of place, you know, the machine will go off. Does it mean that their heart is stopped? Most of the time, probably not. But it's important to understand what those mean. And as you start holding baby, it's more likely for some of those sensors to get displaced and to start making the machines go off. So it's important to educate parents about that before they start holding baby so they can be, so they can not freak out if the alarm starts going off. They call the nurse over and the nurse checks it out and, you know, everything is good. If you've got a good NICU staff, this will happen. If the NICU is over capacity or at capacity, it may be a little less likely to happen. So it kind of depends on what's going on in the NICU, which is why it's important if you're working with a NICU family to educate them. As you spend more time in the NICU, you're going to begin to distinguish among various alarm sounds. And there are alarms that mean the incubator is too hot, the incubator is too cold, the child's temperature is too hot or too cold. You know, there are a lot of different sounds that don't necessarily mean that it's impending doom. It could mean that it's time to change the IV bag. So just becoming more aware and comfortable with the sound so every time you hear a beep, you don't jump, is really important for parents. Depending on the time of day, the unit may be a flurry of activity. And you get to know the ebb and flow of your particular NICU once you've been there for a little while. The one that we were at, shift change was at 7 a.m. and 7 p.m. every single day. At 7 a.m., we all had to leave the NICU because they had their team meeting. So, you know, there was no point coming in before like 7.30. They would have their team meeting, you could go in, but then between 7 and 10 was when the pediatricians and the respiratory therapists and everybody else came around to do their rounds. So if you didn't want to be in the midst of all of that, you didn't come in to do visitation until after 10. If you wanted to see the doctors, you knew when to be there. So sometimes it's very, very quiet. Actually, the majority of the time in the NICU, it's very, very quiet. In terms of activity levels. But during those periods where doctors and stuff do their rounds, it can get kind of hectic. Many different healthcare providers are involved in the care of premature babies, and they're going to introduce themselves to parents. Parents don't need to worry about remembering everybody's names or what they do. Staff understands that this is new. This is scary. You're not focusing on much of anything but baby right now. They don't take it personally if you don't remember their name right away. And they will reintroduce themselves. And it's totally fine anytime someone comes up to work on, address your look at your child to say, who are you again? What are you doing? And people understand that. So parents need to feel comfortable talking with the different professionals that are coming in and out of the NICU that are working with their child. Some hospitals will allow the mother to stay on the labor and delivery floor as long as they have empty or spare rooms. I was very blessed to be in one of those hospitals. When my little man was born, I was able to stay at the hospital an additional week on the labor and delivery floor in order to be able to go in and nurture him and provide pumped milk and do whatever else I needed to do, but to allow contact. With my daughter, I was only stayed an extra two days but she was only in the NICU for about a week. Parents may report a range of reactions and emotions following their first moments in the NICU depending on whether they were expecting their infant to need NICU care after birth. Sometimes the ultrasound will show that there's a problem and the baby's going to have to be in the NICU. Other times, the baby's just premature. The baby's condition is going to affect the parent's reaction. When my daughter was born, she was born at 34 weeks. Yeah, she didn't want to breathe for the first five minutes. That was kind of terrifying. But after that, she didn't have any apnea episodes. Her color was good. Her weight was good. Everything was fine. I'd also had past NICU experience, so I knew what to do. I'd been in that NICU, so I still knew the nurses. I felt very confident in the level of care that she was going to get. But if the baby is really struggling, then the parents are probably going to be grieving and traumatized even more. If the parent was in a car accident, which caused the premature infant, if the parent has some sort of mental health condition going on, if the parent had a really particularly difficult labor for some reason, then they may be traumatized and drained in and of themselves from their own experience. So dealing with the NICU life on top of that can just be overwhelming. I mean, parents who have preeclampsia, for example, sometimes have to have labor induced and have a C-section. There are a lot of different things that can affect a parent's mental and physical ability to handle the stress of the NICU. What I do want all parents to know, though, is fear is a normal reaction to the unknown. You may fear the possibility of serious illnesses, disability, or even death when you're looking at your small child. The pediatricians that worked at our NICU always called them peanuts. And peanuts can go south really quickly. They can be doing fine at five o'clock in the afternoon and you go home and you come back the next morning and your kid has three additional IVs and one of them is in its scalp. And that can be, especially when they for some reason have to put the IV in the scalp, it can be really overwhelming and traumatizing because it looks horribly painful. So informing parents of that, making sure ideally, if you can, that the NICU staff will warn parents before they come in if the child has had to have additional tubes put in or whatever is really important. They may even begin, parents may even begin to question their own abilities to take care of this ill or premature baby when you see the apnea episodes, when you see how fragile they are and all the machines they're hooked up to. Parents start thinking, oh my gosh, you know, when I go home, I'm not going to have any of these machines or this expert nurse over here who deals with this every day. I don't know if I can keep this little person alive. So that adds to people's anxiety, not only what's going on right now, but they start worrying about the future and will they be able to take care of this little life. Anxieties about the cost of the NICU can creep up for people. Insurance is, you know, cover some, you know, some insurances are really good, some insurance is not so much. So they may start, you know, getting freaked out about how much money it's going to cost to keep the baby in the NICU, how much money it costs to rent the machines to pump milk and every single little thing that they've got to spend money on. So this can increase anxiety thinking, I don't know how I'm going to pay for this. Ultimately, you know, the hospital is not going to discharge a premature infant because you can't pay the bed rate. You know, that's going to be dealt with later. So right now encourage parents to focus on just getting through right now and getting the little bit healthy and out the door. And then you can worry about working out payment arrangements with the hospital. Some parents also fear their friends and relatives responses to the birth. Not all friends and relatives are supportive when a premature infant is born. Mothers sometimes fear that their partner, their mother or their partner's mother are going to blame them for a complicated birth or for the premature delivery. So they feel a lot of times mothers feel like they're being judged for having a premature infant. Feel like people are looking at them going, what did you do to make this happen? Because childbirth is supposed to be this totally natural normal thing and you couldn't do it right. So what's wrong with you? And it's important for parents to understand this. It's important for mothers to understand, you know, if they're fearing this, if they don't feel like they're getting the support they need. But it's also important for family members to be really cognizant of their verbals and nonverbals and understand that we don't know what causes prematurity. You know, there are thousands of mothers that do everything just right and the baby still ends up being premature. So it's important for people to understand that it's probably not anything that the mother did. It helps to know that most pregnancy and birth complications are not anyone's fault and many NICU admissions are just unforeseen. And this was a picture that I took when I came back one day. Obviously he's still under the billy lights, but they were administering something through a tube in his nose, which kind of threw me for a little bit because it looked, again, terribly uncomfortable. Many parents feel angry at the hospital staff that their birth experience didn't go as expected. And anger and guilt are two huge feelings that happen in the NICU, so we're going to talk about them. Parents, and this isn't just the mother. This is parents may be angry at inability to control events in the NICU. They just don't know what they're doing. I remember getting into a tizzy one time because there were two different nurses. There was the night nurse and the day nurse and the day nurse said that we should feed my son one way. And the night nurse directly contradicted that and said, no, we're not going to do that. And I'm sitting there going, I'm the mother, you know, don't I get a say in it? So I got really frustrated and, you know, my husband pulled me aside and he's like, take a breath. They do this for their, for their living, you know, there's nothing wrong with the way either person is doing it. So, you know, is this really worth the fight? Well, no, it wasn't. But it still frustrated me that this was my child and I felt like I wasn't having me having a say in it. Another frustration for many NICU parents is that the staff refuses to tell them when they can take their child home. The staff has no idea because the child has to hit certain landmarks. I was told with Sean, you know, he had to go a week without an apnea episode and be at least five pounds. Those were his two landmark goals. The goals will differ for each child based on their particular needs. People, parents may be angry at their family and friends for just not understanding the stress that they're going through or what's going on or why this happened. Sometimes friends will be asking, why aren't you visiting your child at the NICU more? And the parent feels very judged for that. So, let's talk about that. Why wouldn't they? Why wouldn't they be at the NICU 24-7? Well, number one, they need to have some semblance of life because this could go on. Sean was in the NICU for six weeks. Number two, sometimes the grief and anger and everything involved in being there 24-7 and just seeing this little helpless person is too much. Sometimes parents can't see that. It's just too painful to look at and they need to deal with that, but that's why they're not visiting as often. Sometimes they feel very content with the amount of time they're spending with their child because their child does need to sleep a whole lot. So, there are times when you're at the NICU, if you spend an entire 10 or 12 hours there, there's a lot of time where the baby has to be in the incubator to stay warm and to get rest. So, it just makes sense to be there in blocks of time instead of constantly. But it can be frustrating when people don't understand and you feel like they're kind of judging you. Don't you care about your kid? Why aren't you there all the time? The child's sleeping and I used to kind of half jokingly say, I've got 24-7 child care paid for by Blue Cross and Blue Shield for the next six weeks. And it was half joking. I was very sad that I wasn't able to do it, but I was trying to find the upside to it. The parents may be angry at each other because they don't understand one another's reactions and people react to having a baby in the NICU very differently. So, it's important to encourage parents to have an open dialogue about what their concerns are if they start developing frustrations, anger, resentments, what that's about. Mothers may also be angry at themselves, wondering why they couldn't carry the baby to term or what they did or didn't do to make this happen to the baby. And again, most NICU admissions are totally unforeseen, so that's nothing that they did. But they feel a sense of guilt because that baby is so helpless. They feel a burden because one of the most natural things in the world, which is childbirth, they weren't able to do, so they somehow feel like they're less of a woman or less of a good mother because they couldn't carry the baby to term. So we need to talk with them about those thoughts and look at the evidence that they are supporting the belief and against the belief that they have that they may not be a good mother or whatever their belief is. They may be angry at the baby, and this one's really hard to talk about, but it's true. They may be angry with the baby because the baby just couldn't wait for a few more weeks. And in that picture where Sean is under the billy lights and he's all stretched out, we used to joke that he didn't have enough room, so he wanted to move out to a condo. And, you know, he stayed stretched out for like the first week after he was born. He didn't curl up or anything. He was just like arms above his head and legs fully out. Another frustration with a lot of premies is they don't have the strength to breastfeed, so they have to be tube-fed. And tube-fed can be very traumatic, not only because the baby's not nursing, but also watching it happen. Watching the nurses have to feed the tube into the infant in order to get them their nutrition. People may be angry at their higher power for allowing it to happen. So, you know, whether you feel like you're able to handle it as a counselor or you need to help them connect with their spiritual leader, that's, you know, going to be a case-by-case basis. It's not uncommon to look at a helpless little thing and think you're supposed to be able to control everything. You made the world, you made people. Why are you doing this to my child? So, there can be some anger that comes out. And there can be anger at the NICU in general for disruptions in life. When Sean was in the level three NICU, there were only certain times of day we were allowed to visit him. And, you know, that conflicted with some other things that we had to do sometimes. So, we didn't necessarily get to see him at every visitation period, which was frustrating. Again, it's important to remember that there will be anger, there will be grief, there will be fear. But parents are going to express this in different ways. Some parents are going to be openly angry, demanding, want to blame others, want to sue the doctors, want to sue the hospital, you know, they're going to be on a war path trying to get some control over the situation. Some want to retreat or run and keep their anger hidden inside. And they may either not visit or when they do visit, they may be, they may just stuff that anger and be very passive. It may be difficult for parents to acknowledge any anger, especially if that anger is directed toward their baby or partner. So, if they blame their spouse for some reason, whether it's the dad blaming the mom or the mom blaming the dad for whatever happened, people are trying to find a reason, they're trying to understand why this happened, how could this have happened. So, sometimes mistaken thinking can lead to blaming other people. To cope with anger, encourage parents to begin acknowledging it to themselves, their partners, and the people around them. And you find, especially if you're in the NICU during those slower times, the NICU nurses are actually really good listeners and they can empathize. Encourage parents to remember that anger is normal and it's an expected emotion in most NICU parents. This is not something the nurses haven't seen before and it's not something they probably haven't seen that day. So, it's common. It is important though for parents to make a plan to address the problems that are keeping them from bonding with the baby or are causing hardships in their other relationships because they're holding on to this anger. Helping parents recognize that dealing with their anger can give them more energy to care for themselves and their baby can spur this process along a little bit. Loss and grief in the NICU, these are other things that come up. You know, people need to grieve. I said there's anger and fear. They need to grieve and some of the things are not really obvious. I mean, they have the baby, the baby's alive. Yes, but they lose the vision of what childbirth would be. You know, I expected to have my baby and, you know, two days later be wheeled out in a wheelchair with a little bundle in my arms and go home and, you know, live the Warden June Cleaver life. That's what it wasn't what it was. You know, it started out with a ride in an ambulance and a whole bunch of shots in my keister to try to stop the labor and then progressed from there. I hadn't even gone through childbirth classes yet. I was like, hello, I don't know what I'm doing here. So the loss of the vision of about what this perfect childbirth experience is supposed to be. Many parents grieve that, especially if for whatever reason the parent is now not able, the mother is not able to have any more children. You know, then, you know, their one shot is gone. Most of the time, whatever causes prematurity doesn't cause infertility. So they're able to have other children later. But it's important for parents to realize that in general, not all the time, but in general, when you have a premature infant, the infants after that are also going to be premature and are going to be more premature. So that was a risk when we had my daughter, because my son was 29 weeks, we had my daughter. And so there was a big question about whether she would be even more preemie than her brother. And long story short, we decided to do it because we have another child because we figured out some of the things that may have contributed to the prematurity. And she managed to stay in utero until 34 weeks. So she stayed in a lot longer than her brother. But that's not the normal. That's not what normally happens. So parents may decide that they don't want to have any more children for fear of having another preemie, which again disrupts this idea of this beautiful experience of bringing a new life into the world. They may grieve the loss of the full pregnancy or birth experience and miss feeling the baby inside their tummy. They may miss the loss of the ability to parent from the beginning. I can tell you one of my hardest days was the first day I had to leave my son in the NICU and walk out of the hospital and leave him behind. That was just gut wrenching. The loss of confidence in self because of their premature labor, not knowing what caused it or if they did it. When the child won't breastfeed, you know, thinking what's wrong with me. Sometimes they're not strong enough. Sometimes for whatever reason it's just not going to happen. They can lose confidence in themselves when the child has a setback and there are setbacks in the NICU. It's not a straightforward trajectory most of the time. There are going to be days where you come in and juniors taken a step and a half back. What you hope is it's two steps forward and one and a half back instead of two steps forward and three steps back. Either way, whatever happens, the parents are going to have to deal with it. So it can start shaking their confidence. And they also might start thinking, well, once baby gets out of the NICU, are we going to have another one of those setbacks? And am I going to know what to do to be able to handle it to keep my child alive? And there also may be a loss of confidence in self. If the child cannot be touched or held for a little while, then when time comes where you can hold your baby, parents may not feel confident in holding them for fear that they're going to hurt them or break them. And sometimes just because they're so small, it's scary to hold them. And sometimes they're so small and they've got all these wires and tubes and IVs in them. And you're like, I don't want to hurt them and I don't want to take, you know, accidentally knock off something that's important. A good NICU nurse will ease fears about all of that and they will help the parents get the baby out of the incubator, help the parents get settled holding the baby. So there isn't that risk of, you know, accidentally displacing a monitor or something. Some parents will experience losses due to children's disabilities. You know, because they're in the NICU, sometimes it's a perfectly healthy infant that just didn't stay in utero long enough. Sometimes the child has some significant disabilities. So the parents are having to deal with that and try to figure out, you know, what's the next course? How do we help our child go through all these surgeries or do what needs to be done? And they may grieve loss of time with their family and other children because spending time in the NICU, even if you're not there all the time, it's a time consuming process. You go in and before you can even go into the NICU, you've got to put on a gown and scrub. That's a five, 10 minute process in and of itself. And then you get in there and spend time with your baby and what have you. You can easily, even if you're not spending an inordinate amount of time in the NICU, you can easily spend two or three hours just in those processes and seeing your child each day. So kangaroo care and you can see my little, my little peanut there is on my chest at that point. And kangaroo care is one of the best ways to help babies bond and parents bond with one another. And it's not just the mother. It's the skin to skin contact from the parents that help the babies bond. It also helps them hear the heartbeat and feel calmer when babies are in the NICU. Since you're not able to spend as much time holding them and carrying them and stuff as you would if they were at home, you need to nurture that love. So you develop that attachment relationship because it's hard, harder to develop that attachment relationship in the NICU than it is when the baby's home with you. So bring in baby clothes at a certain point and usually really quickly. You can start instead of just having the baby in the hospital gown or whatever. A lot of times it's just, just a baby diaper. You can start bringing in little clothes for them to put on. And so you're personalizing it. You're putting on the little PJs with the giraffes on them or whatever it is that you have. And it starts to feel more like your little munchkin. Bring in heartbeat sounds. There, you can get little devices that play heartbeat sounds. Sometimes you can even find devices that record the sound of your own heartbeat, which is what your baby has been hearing for the past six, seven, eight months, and set it up so it plays in the incubator for baby, which can be very calming. Take pictures. And if you can't be there for a period of time, if you have to go back to work, ask the nurse to send you pictures when he or she has time, you know, just text you pictures or email you pictures of your baby. And it's not hard for them to take a picture. They have to get releases signed and everything, but most NICU nurses are more than happy to occasionally send you a picture of how your baby's doing. Keep a journal of the day to day activities and how Johnny is that day when you show up at the, at the NICU and any funny moments. You know, I remember one time with my son. I was changing his diaper and in the NICU, it's really important every time you change a diaper to weigh it because they want to make sure that what's going in is also coming out and whatever. So, you know, I was changing his diaper and I knew with little boys, you wanted to be aware and not to get hit by the water spout. So I was all proud of myself for making that happen. But what I didn't plan for, you know, I had his front covered, but I picked up his little legs to slide the diaper underneath him and he had explosive diarrhea and I had just been bragging about how I hadn't been hit by the water stream. Well, he got even with me and the nurses found that so funny. So I journaled that and that's one of those things that I've told my kids and they laugh at me about. It's okay. In order to increase bonding, it is important to hold the baby when you can. You know, a lot of times really premature infants can't regulate their own temperature well enough to be out of the incubator for more than five or 10 minutes at a time, even bundled up. So, but holding the infant for that five or 10 minutes is really important. And as they get older and put on a little weight, they start being able to maintain their temperature a little more. And the skin to skin contact also allows a better transfer of your body heat to that child's body heat and helps keep their body heat up. So kangaroo care is good. There's lots of books on it too. Read books and sing songs to baby. You know, just like you would in your own nursery. Ask nursing staff to reserve bathing and other parental duties to you, schedule permitting. So, and it's not hard for them to not bathe baby if you're going to be coming in that day so that you can give your own child a bath and have those experiences yourself. Now feeding sometimes they have to do because the children do need to eat pretty frequently. But if they know you're coming in at four o'clock and the baby's supposed to eat at 3.30, they may delay that feeding so you can feed baby. Let staff know your schedule so baby can be ready and providers can know when to stop in to see you. Some will say you've got to come during rounds, but a lot of providers will come, especially if there are particular issues they need to discuss with you. They will make an appointment to meet with you. Parents of premies are often still reeling from the shock of the baby's arrival weeks or even months before the due date. Mom may never have fully adjusted to being pregnant, much less being a new parent. You may not have the nursery set up yet and you're thinking, oh my gosh, all these things that I was supposed to do before the baby was born. Well, it didn't happen. But baby's probably going to be in the NICU for a while so you got some time. It's not a panic. Parents may feel distant from their baby and it's not a very effective newborn intensive care unit. It's hard, especially if you're not holding your baby. Sometimes you feel a little distant. You feel like you should be wanting to hold the baby more than you are or you should be this. NICU is no place for shoulds. NICU is a place to be very mindful of what you need and what baby needs. And sometimes baby just needs to rest. Encourage parents to give themselves permission to cry and feel overwhelmed and help them connect with other NICU parents who have shared many of the same feelings and struggles and they can normalize what's going on. A lot of times NICU staff has a list of graduate parents who are willing to talk to new NICU parents. The hospital that I was at had a new parent support group that met every Tuesday for lunch. So that was a place you could go. Now that was for all new parents, not just NICU parents. So I never went to it because it was too painful seeing all these other new moms with their babies in tow and I'm just sitting there by myself going, hmm, so that wasn't a good fit for me, but that was me and my issues, not so much that the hospital wasn't trying. Parents can connect with others who understand what they're going through at the March of Dimes website on the Share Your Story page. This online community was created especially for families who faced the frightening experience of having a baby born early or with a health condition. Continue to encourage parents to connect with baby through kangaroo care. Kangaroo care also helps with nursing and stress. That contact with the baby for mom can stimulate the production of milk and can help, you know, even if you're having to pump, it can make producing milk for the baby easier and reduce stress on both you and the infant. Parents need to establish a routine. Find a way to balance work, home life and visiting the hospital. You can't be at the hospital 24-7, well, you can, but it's usually not the best idea to be at the hospital 24-7 for however long your baby's in the NICU. You need to get back to some sort of a routine for what you're going to do. Now, if you normally would spend 24-7 with your infant for that first six weeks, okay, well that might be something you consider, but your partner may feel neglected if you're not home, if you're not sleeping there, if you're not doing those things. So it's important to figure out when can I be there, when can I be away? It's important for parents to give themselves permission to leave baby's side, you know. Yes, peanuts can go south quickly. If you have confidence in your NICU staff, then you also have confidence that they'll call you if there's a problem. So it allows you to feel a little bit more comfortable to leave and go home, leave and go get something to eat. It's important for parents to have time for themselves with each other and with any other children. Children of parents who have a preemie may feel even more neglected and resentful and angry than those of parents who just bring home a new child because there's so much more stress and so much more focus on the infant that the existing children can start to feel really jealous. So it's important to make sure to educate them about what's going on, even if they can't go in and see the baby, if they can look from the outside to the window, if you can bring pictures home. But also, not having your entire life revolve around the baby, you know, sometimes just going out with your current children and doing something fun and not bringing up baby for an hour or two can be really helpful for those children. It's important for parents to take time to do things they enjoy, exercise and get good nutrition. Nutrition, exercise and sleep are huge. When you're in the NICU, it can be really dark, which can throw your circadian rhythms off. It can also contribute to vitamin D deficiency if you're doing it too much, which may increase depression, postpartum depression and a variety of other things. So encourage parents to take a break from the NICU because they usually have the lights dim in there. I would go out periodically and early on when I didn't feel like I could leave aside for very long, I would go into the stairwell of the hospital and I'd walk up and down the stairs from the top all the way to the bottom and do that a few times just to get my blood moving. And, you know, it's important to go out and get sunshine and do those sorts of things in order to keep your physical system regulated. Parents can explore their spiritual side and reflect and lean on their personal spiritual perspective to get them through it. Parents can keep journals, which can strengthen hope and patience by reminding them how far their babies come. When you look back and you think, oh yeah, I forgot about how many problems we had that first week and now, you know, we're only having a couple of issues periodically. It's important for parents to vent frustrations appropriately as well as hope for the best. You can be frustrated and you can still have hope. They're not mutually exclusive. When babies have setbacks, parents may be plunged into fear and anxiety and it's important that they understand that that's normal. Every time your baby has a setback, just like every time your bigger child gets a really bad cold or something, you know, all of us have a little twinge of anxiety about what's going on. With the little ones, they can go south so quickly and they are so fragile that that little twinge is a really big twinge when they have a setback. So it's normal for them to have that fear and anxiety, you know, every time baby has a setback. Sometimes it'll lessen and sometimes it won't, but they need to just be okay with what it is. Parents need to celebrate when they can, when baby makes progress, dare to experience the joy. I remember, well, oops, got a picture in a few minutes. It was a huge step when Sean moved out of the incubator into what they call a big boy bed and that's one where it obviously doesn't regulate the temperature. It's more like a little bassinet. That was huge. That was a big day for celebration for us. So we experienced the joy and I do remember he was in the big boy bed for a couple days and then he had a setback and had to go back into the incubator and that was hugely disappointing. But then he moved out again and didn't ever go back into the incubator. Parents need to accept the support of others, however clumsy it may seem, and let people know how they can help because a lot of people want to help but they don't know how. And it's important to remember that everyone's going to react differently. Encourage partners and family members to share experiences and listen with empathy so everyone can feel supported. I remember one of our friends came to visit our son and she started crying and she's like, I just didn't expect him to be so small and I'm thinking to myself, so small, he's doing just fine. Why are you crying? It was hard for me to understand because I'd been with him for three or four weeks at that point. I was so happy that he was so much bigger and she was comparing it to her baby when she had him. So it's important to encourage people just to be accepting of one another's reactions. It's natural to feel anxious and unsure about taking care of a tiny baby while hospitalized in the NICU. So we can help parents feel more confident as a parent in a NICU by reminding them that all new parents feel anxious and unsure whether they're in the NICU or not and being in the NICU because you've got these professionals around you and you kind of feel like you're being evaluated a lot it can intensify anxieties and NICU nurses really aren't trying to evaluate. They're trying to keep an eye out so if they see that you're needing some help they can be of assistance. They're trying to be helpful, not judgmental. Even if you're an experienced parent parents may feel anxious and unsure because parenting in the NICU is different and challenging. So you feel like a beginner because there's so many wires and cords and you don't know when you have permission to get your baby out and things like that. Nobody expects parents to be comfortable with a new baby right away especially a preemie or one with some sort of significant disability that makes it seem more fragile or if they've got lots of tubes and wires and monitors not something that you've experienced before so nobody expects you to be 100% comfortable with it. If the parents you're working with are afraid to make mistakes or show they're inexperienced encourage them to let the nurses give them support and practice taking care of their baby and remind them that the nurses have seen it all before so backing away from baby is going to hurt that attachment experience and the nurses are there to help. Dads have their own unique set of issues. So if dads want to help mom, which they do there are things that may happen if the mom can't go to the NICU for some reason either because she is physically unable to because she's emotionally unable to because she had to go back to work whatever it's important to tell her how the baby's doing show her pictures of the baby and tell her about the baby's condition and medical care help her provide breast milk for the baby so if she's having to pump give her space to do that because it's not the most attractive thing in the world but encourage her because it's uncomfortable and it feels weird and there's a lot of stuff about pumping that can be a little bit challenging but provide encouragement for her reassure her that you don't blame her for having the premature infant the mother may feel responsible or guilty about the baby's condition so dads can encourage moms to talk to a counselor or seek a support group if it's causing problems with bonding be patient with one another the mom's fears, pain and tiredness may make her stressed and changing hormones after pregnancy may make her even more emotional and moody so it's important for dads to understand this and understand you know not only do we have the normal ups and downs of the postpartum period but we've also got the trauma of being in the NICU so there could be a lot more emotionality recognizing that and knowing that this too shall pass can help some dads get through the period encourage moms to take care of themselves they need to get enough rest and eat healthy foods if mom feels guilty, angry, depressed moods are all over the place she may start eating poorly or not have any appetite at all and it's important to encourage her to take care of herself so she can be there to take care of of the child so this was Sean when he moved into the big boy bed and it was one of our really stellar moments so discharging from the NICU before you discharge preferably a couple weeks before start planning for discharge connect with early intervention services to get set up for an assessment if a child in the NICU is likely that they will qualify for some early intervention services these are services that are covered by Medicaid Part D I believe as well as most insurances so it's not an additional cost for the parents and it's a system of services that helps babies and toddlers with developmental delays or disabilities so they get in there early and they do as much remediation as possible to make sure that the child gets back on track so to speak it provides assistive technology devices the child may need such as hearing aids when we're talking about toddlers we may be talking about glasses leg braces anything like that audiology and hearing services speech and language services counseling and training for a family we had an early intervention specialist that came to our house three times a week after Sean was discharged and helped us work through some of his developmental issues medical services, nutrition services nursing services occupational therapy, physical therapy pretty much anything the child could need to get them back on track biologically, cognitively all that stuff is available through early intervention connect with a lactation consultant if baby is not nursing before you leave the NICU and you want to try to nurse it's possible once they're past those apnea episodes they'll be strong enough to be able to nurse so you may want to try to contact with the lactation consultant and most hospitals have one make sure you've connected with the pediatrician this probably happened as soon as the baby was born but every once in a while parents have a child so early they haven't gotten established with the pediatrician yet so the baby is getting ready to be discharged and they don't have a pediatrician set up so it's important to make sure that happens because there's a lot of doctor visits when infants are really small encourage parents to discuss their fears with the medical staff and talk with the doctor about possible take home equipment some families will get an apnea monitor they can take home I wish I had had one but we got through without it and that helps parents feel more confident even though junior's been a week without an apnea episode it helps parents sleep more calmly if they know that if there is an episode the monitor will go off gavage tubes and a syringe if the baby is still needing to be fed that way and know how to administer those a lot of times children who have been fed through a nasogastric tube it's a tube that they feed in through the nose goes all the way down into the belly and you just basically pour the food in may end up with gastric reflux issues for a short period when they are younger because the muscle that closes off the top of the stomach gets kind of weak because it's constantly having a tube stuck through it reflux issues can be handled easily by the pediatrician but if the child is having reflux issues and you'll know it because after they eat they will scream and or they will have projectile vomit talk with the pediatrician some infants also have oxygen that goes home with them so whatever kind of things that they will need get those set up ahead of time so mom can walk out and doesn't have to worry about running around to different places to pick up monitors and this and that it's already there and she can just go home with baby and focus on baby and try to get a transition room even if junior's been in the NICU for six weeks a lot of times they'll allow you a transition room where you stay usually it's on the labor and delivery floor for 24 hours with the baby so the baby is moved from the NICU into a room on the labor and delivery floor so you can sleep a night and go through a 24 hour period with junior and without nurses like right there on top of you to get more comfortable handling baby and being with baby before you take the child home so there are a variety of challenges that premies face life in the NICU isn't easy for parents either and it's not easy for either parent it's important that we normalize parents reactions and help them focus on being mindful staying in the present moment accepting what is you know not getting worried about what will be just staying in the present moment help them maintain adequate self care which will help them be less vulnerable to depression and anxiety and that kind of stuff but it will also help them bond more effectively with the child encourage a NICU work life balance help them get back kind of in the swing of things however they define that whatever is comfortable for them be very alert to signs of postpartum depression in both parents obviously we think of postpartum depression in women and changes in hormones and stuff but there's a lot of stress that dads go through too and it's not uncommon to see postpartum depression symptoms in fathers that also needs to be addressed because dad postpartum depression can cause dad to have problem bonding with baby can also cause dad to have problems being as supportive of mom and all those other things that go in there so we need to make sure that both parents are healthy and as happy as can be and help the family develop a transition plan for discharge so they feel like they're not just kind of being tossed out there on their own like here good luck it's been real that they have a support system and they know who they can reach out to early intervention services I can't say enough good things about them they were really our lifeline when my son was young because she was coming in three times a week and helping us work with them and helping normalize what was going on with him because how he was developing was very different than how a lot of my friends children were developing because they were born at term when to sing counseling parents ability to cope with the situation is not improving and they feel stuck they may need to see a counselor if they continue to find no joy in other parts of their life or they're having trouble with their relationship with their partner or others close to them they may need to seek counseling if they feel a parent support group isn't quite enough they may need to seek counseling if they feel prolonged numbness or detachment especially feeling detached from their baby they may need to seek counseling if they have trouble getting out of bed or starting their day or feel unable to cope or manage their responsibilities a counseling referral may be appropriate and obviously if they're thinking about harming themselves or others it's important that they seek counseling now one caveat to this that we'll go over in the presentation on postpartum depression is if they're having scary thoughts about harming themselves, their baby or someone else that make them nervous that freak them out that's a good sign it's when those thoughts are egosentonic when they make total sense to the person that we worry about postpartum psychosis if they're having scary thoughts and it's freaking them out those are ego dystonic and that sometimes happens with postpartum depression and do I want parents to have that? No but I do want to normalize it for parents that these are not all that uncommon and counseling is appropriate counseling can help them figure out how to deal with those fears but it doesn't mean that they're a bad parent so like I said we'll talk more about the difference between postpartum depression and postpartum psychosis in the next class if you enjoy this podcast, please like and subscribe either in your podcast player or on YouTube you can attend and participate in our live webinars with Dr. Snipes by subscribing at allceuse.com this episode has been brought to you in part by allceuse.com providing 24-7 multimedia continuing education and pre-certification training to counselors therapists and nurses since 2006 use coupon code counselortoolbox to get a 20% discount off your order this month