54: Kelli Kelley – Holding The Hands Of NICU Families

 

PODCAST TRANSCRIPTION

Chuck: Hi! Today on the podcast, Rita and I are here, and we have the privilege of welcoming Kelli Kelley to the podcast today. And Kelli's had two children. And they both spent time in the NICU. So she's going to share her story with us. And from those experiences, she started a nonprofit organization called Hand to Hold. So she's going to tell us all about that and how she's helping other families that have gone through similar experiences. We can't wait to hear all the great things she's doing helping so many families. So welcome, Kelli. How are you today?

Kelli: I am great. Thanks so much for having me. Delighted to participate.

Chuck: I think the work you're doing is pretty phenomenal. So let's just start with your first experiences in the NICU with your children. And I guess we'll just start with your first experience. And did you know prior to (the birth) - during the pregnancy - did you know that your son was going to be in the NICU?

Kelli: No, not at all.

Chuck: …did that happen after he was born?

Kelli: Yes, this was our first baby. We were very excited. We felt like we had done everything we were supposed to do. We planned ahead. We took the vitamins and went to every appointment. And everything was progressing just perfectly with the pregnancy. And I worked at a public relations agency. Kind of late in the afternoon, I wasn't feeling very well. And I decided I would leave a little early and try to avoid some of the Austin, Texas traffic, and got onto the interstate and began to experience labor pains. Of course, I didn't know at the time that's what it was because I hadn't gotten that far along in What to Expect When You're Expecting to think that I would go into preterm labor so early. But it took me more than an hour to get home, and my husband was there, and I told him that I thought I was sick. I really didn't even know how to describe what I was experiencing.

And so we always laugh about this, but we decided to call our moms because we really didn't know who to ask and had never had a pregnancy before, so we just didn't know what was normal. And his mom asked me a series of questions. And these were questions I didn't even have the wherewithal to ask myself. I just didn't know enough about what to expect in preterm labor. So we called an ambulance. They really didn't believe that I was in labor at the time. They assessed me and really just encouraged me to make a follow-up appointment the next day, but thank goodness my husband just really insisted that they go ahead and take me to the hospital. And I'm glad they did because while we were in route to the hospital, the labor progressed very quickly. And so before we reached the hospital, I knew that I was in active labor. And like I said, it just progressed very quickly after that. Once we were at the hospital, my water broke. And they took me into emergency surgery for an emergency C-section. And at the time, my son was really considered at the cusp of viability. He was 24 weeks.

So when they put me to sleep, I honestly believed it was just to save my life, not that he would survive. So I really thought that I had lost the baby, but I'm very blessed with all of the medical advances that we have today that he survived. And so when I was finally recovering, they were able to tell me that he weighed a pound and a half and he was 12 and a half inches long and 24 weeks and 1 day. So we're saving babies a lot earlier now. But again, he'll be 17 in August, so that was a long time ago. But that started my NICU journey. It was very touch and go in the beginning. He had a lot of challenges. Because it was an emergency, I did not get the steroids that are often given now when we know that a woman is in preterm labor. So he struggled off and on the oscillator, the ventilator, CPAP, etc. Just really his main challenge at birth was breathing.

And I think it was 3 in the morning. A nurse came to take me to see him. And I honestly did not want to go. I didn't think that I could handle seeing him hooked up to monitors and machines. And even though I don't think I logically understood my thought process, I know now I was really trying to protect myself because I was so scared of loving this baby that had every probability of not surviving. And so my mom was there. And she really encouraged me and told me how important it was that he hear my voice and that I be there and start to bond with him. And so like I said, it was 3 in the morning and I had had an emergency C-section just hours earlier, and they wheeled me in there. And I just had no idea what to expect. I didn't know what a NICU was. I had had one or two friends that I had known in the past who've had had preemies, but in my mind I think prematurity was just a small baby. I just had no idea what was behind those doors in the NICU. And I think I kinda expected maybe to see three or four babies.

And so I was completely overwhelmed when there was a whole unit full of babies hooked up to all these monitors and machines and the incredible staff that's in the NICU. So it took a while to get acclimated to that environment. It's a very scary environment, if you've never been into it. Although they've done a lot to make it family-friendly now and a more welcoming environment, if you don't have a medical background and you were expecting a full-term baby and then you're presented with a baby who really was lifeless. When I first saw him, he was almost transparent, I think you would say. You can see every vein in his body and see his little heart with every breath he took. And the little caps they give them in the NICU, it just completely engulfed his little head. And he had needles and tubes and wires touching him in every place of his body. It was really hard to even make out his face in any way. So it was a very traumatizing experience as a first-time parent and not having any idea now what's in store for this baby. The doctors met with us and talked about the potential for a brain bleed when a baby is born so early and that that could lead to cerebral palsy and mental retardation and lots of other challenges. (They) talked to us about the potential for hearing loss and vision loss and so many complications. And I just… My heart broke. I just could not imagine what kind of life this baby was going to have and if I was really capable of parenting this very medically fragile child. What was my life going to look like now? I'd always been a planner and kind of Type A personality, and this was something that I had not planned for and was completely out of my control. So it really took a while to find my footing in the NICU.

Chuck: How long were you in the NICU with him?

Kelli: Four months. He was 24 weeks, so that's 16 weeks, early. And so he was due in...I think the due date was November 20th, and he was born August 7th. So he made it home for Thanksgiving. And that's still the best holiday we've ever experienced, but he...and I think the turkey outweighed him by about 10 pounds. He was a little bitty thing. And, of course, he came home with monitors and lots of medications. And the first five years were really intense as he had some follow-up surgeries and lots of occupational speech and physical therapy. My husband and I just very early on were really determined to give him every opportunity to meet his full potential. And we just felt like why would we pay for college if he couldn't go to kindergarten? So we just really dedicated ourselves to investing in all the therapies that he needed really early on and working really intensely with him to ensure that he met his milestones.

Chuck: That's fantastic. So how is he today? How is he doing?

Kelli: He's very good. He will be 17 in August. Life has not been easy for him, but he works really hard. He has to work really hard for things that I think other adults, parents, take for granted in our children - teaching him to play ball and ride a bike and, you know, even hold a fork. All those things were very challenging. But he has overcome all of those. He's doing very well academically. And he's pretty athletic. He's very strong. He takes boxing. He's very involved with children with special needs. And I think that comes from him knowing the value of his life and all the blessings that he's had. And he just really has a heart for children that have special needs. So he's a volunteer for a baseball league here in Austin that is for kids of all needs. And he is a volunteer at a camp for children with autism and other challenges. So I'm just really proud of the young man that he has grown to be.

Chuck: That's fantastic. That is a great story. No doubt. So talk about your daughter and when she came along, and the experience you had again in the NICU.

Kelli: Right. Well, I quit my job. I kept it for a year after Jackson was born because we needed that insurance. I had better insurance than my husband. And with all the therapies and medications, we needed that insurance. So I continued to work from home part-time. And it just got to the point where I could not handle my work load and take him to all of his appointments and do his therapies. And so my husband and I made the decision for me to stay home. And once we did that, I felt really driven to have another child. I just felt like I'm not getting any younger and I'm in good health. And we wanted Jackson to have siblings. And the specialist told us that they really felt like I could carry to full term. They did not find any particular reason why I went into pre-term labor. And I now know like in 50% of the cases, there really is no known reason what causes spontaneous labor and delivering. The specialist recommended a cerclage and that's actually a procedure that's done on the woman's cervix to strengthen the cervix to hold the baby. And so Jackson was almost two and a half when his sister was born, but again, in the middle of the night my water broke. We had to rush to the hospital, but this time I was 34 weeks, which would be 6 weeks early. Many of the doctors and nurses that were there and took care of Jackson in the NICU were there for Lauren's delivery. And they assured me that she looked great, that they were going to assess her in the NICU and then bring her to my room. And unfortunately, that just never happened.

She actually had a blood disorder that had not been identified in utero. And so after birth, her bilirubin levels were extremely high and they had to give her some blood transfusions and medications, so she had to be hospitalized for about a week.  So a very different experience. You know, with Jackson, he was so small and sick, and you knew he needed to be in the NICU, and I was not capable of managing his care, and I knew it was going to be a long journey for him. But then the flip side was Lauren, being a late-term preemie, she was five pounds, seven ounces. And she appeared to be a healthy baby. And it was just so hard, again, to be disconnected. One of the things we talk a lot about in the NICU experience is the bonding being broken between the mom and the baby because we're separated. If you can just envision the Isolette that has the little portal for your hands to go in, that glass is a physical separation for us. And they call it kangaroo care when we hold our babies skin to skin. And we've learned through the years that that is so beneficial not only for the baby, but for the mother, as well, and the father in bonding with the baby. And it's just a very natural instinct to hold and cuddle with your newborn. And so when we have this very synthetic medical environment and we're not able to hold and touch our babies, we're interfering with that bonding process. So it was very difficult being separated from her. And, again, she had to be hooked up to monitors and IVs. And I had to be discharged from the hospital without her. So two times making that long drive home without a baby, it can be very traumatizing and something a lot of parents don't talk about.

Chuck: Before we get into the trauma part of it, how far away is the hospital from your house? Like how far were you traveling?

Kelli: It was about a 45-minute drive each way. So I think I'm very blessed and lucky that I had such a high-level NICU with amazing care within that driving distance, but we've done such a great job with most of the hospitals partnering with Ronald McDonald Houses to make sure that no parents that are far away can stay close to the hospital. And now, we're seeing more and more Ronald McDonald rooms inside hospitals, so that parents have a place to stay. There were several nights where we didn't know if Jackson would make it through the night. And you don't want to leave the hospital, but you're exhausted and just need a place to be and call home, and so it's just wonderful that we now have those suites available for our NICU parents to be there and be close to their kids.

Chuck: So you mentioned trauma. And trauma is something that comes up practically on every podcast we do when we're talking with moms or dads. They always talk about their experience in the hospital and how that affects them. And a lot of times, they don't even realize it until they get home and then they're at home and they've had time to process things. So talk about your experience with it and how you handled it and how it affected you and changed you.

Kelli: Certainly, I would say the same for me that when you're in it, you don't really realize it. I've compared it to a frog in a pot of water, right, that you set on high, and it starts to boil, and they don't jump out. And I think it’s kind of the same. Like it just happened so gradually, and you're in this environment, and you don't realize what's happening to you emotionally and physically. But for me, I look back and it was maybe the third or fourth night that Jack was in the hospital, I was still in the hospital, and I just couldn't stop crying. And even with a preterm birth, there's the wave of hormones that happen after delivery. And so I'm dealing with all the hormonal changes that a parent of a newborn would experience, but also just the stress and grief of this baby that is so critical. And a nurse came in to check on me, and I just had this challenge of trying to explain to her that I missed my baby. And she immediately offered to take me to the NICU to see Jackson, but I said, "No. I miss him being inside of me. I miss being pregnant." Like when I look down now, I have this hideous scar. I had an emergency C-section. It was not pretty. I had all these staples. And, you know, I used to just look down and see this beautiful round belly, and now I just saw this hideous scar, and I think that was the first trauma. And then all of the challenges, like watching your baby be resuscitated, I don't know that I will ever get those images out of my mind as just standing there watching doctors frantically work on him multiple times in the NICU stay and wondering if he will live.

And when you're home and your phone rings and you see that it's the NICU and you think that they're calling to tell you that your baby has passed away. And just not knowing what to expect every time you go back in. I mean, he'd have a great day, and I'd go back in the next day and he'd have tremendous setbacks. And so I think it's just grueling and it really takes a toll on you. And we talk a lot about PTSD. And I thought that I didn't have PTSD because my baby lived and I should be able to get over what I was feeling. And PTSD was really common for a military veteran, not a NICU mom. But now after more than a decade working in this field, I understand that we just have a very high percentage of our families that are really struggling with anxiety disorders and depression and PTSD. And it makes a lot of sense. You're kinda in a war zone. All hospitals are different, but the hospital we were in was an open-bay environment, meaning that each child did not have their own room. And so you're really experiencing what's happening around you, as well. And so you're seeing parents that are receiving bad news. And you see a baby that was there one day and they're not there the next. And you wonder, "Is that gonna be my baby?" And there is a very crippling disease called necrotizing enterocolitis. It is common with micro-preemies, so babies under two pounds. And a baby can develop necrotizing enterocolitis and have tremendous setbacks.

It's a big challenge for our NICU babies now. And we are looking at a lot of research around breast milk, exclusive breast milk for babies that are less than two pounds.  But then there's all these challenges of needing fortification to ensure the brain development and the rapid growth that our preemies go through. There's so much being thrown at you. And there's so much you don't know. You're trying to educate yourself. And for me, a lot of it that I didn't realize at the time that just the beeping of the monitors and all of the alarms going off, it's very disjointing. And even now when I shop at certain stores, the tone of the announcements that they make, it can really set me off. And it's a physical response and not something you can control -  your heart racing and not being able to catch your breath, and after that I’ll sweat or feel sick. And this is 17 years later. And so I think it's a very real thing. I am a very strong proponent of better psycho-social support for NICU families, or any parent who's experienced the trauma of birth. And I say that for fathers, too. I didn't realize for a long time but I was put to sleep for the delivery, whereas my husband was just watching helplessly as his wife is having an emergency surgery and this baby is delivered. And he describes him as a limp, wet bird. It just looked like a baby bird. And his life was turned upside down. And he witnessed all of it. And he was taken to the NICU. And he was there for all the initial assessment and care. And so I think it's really a disservice if we don't think about the fathers and their trauma, as well.

Chuck: For parents that are going through this, like now that it's been 17 years out for you, what advice would you give them as far as their own healing and things they can do to help them process all of this?

Kelli: Right. I think it's just being aware, first, of their higher risk for anxiety disorders, depression, PTSD. I think if they are not able to function and do the daily things that they normally would do - if it's interfering with sleep and eating and communication with their partner or their family, their caregivers in the hospital. I think first it's awareness, and then seeking support, asking for support, being willing to take the support. We work really hard to demystify the mental health issues and emotional issues during the NICU stay. Yes, we want to show that we are confident and competent and included in our baby's care, and we want to be seen as an involved, caring parent. But at the same time, we have to take care of ourselves. We hear a lot that analogy about when you're flying and putting the oxygen mask on yourself first. It's so true because you're not gonna be able to care for your baby, if you're not first addressing your own emotional/physical issues.

So I really think it's important to identify what services are available, talking to the social worker, and if the hospital has counselors, finding resources online, or connecting with organizations like Hand to Hold. There are organizations throughout the country started by other NICU families.  So dependent upon where you are you may have support groups in your hospital. I highly recommend support groups. I know for a lot of people I think they just have a misperception of what a support group is. And they feel uncomfortable about going and sitting in a room with strangers and talking about their feelings. But we've just found that they can be transformational for our families, and so not being afraid to share your feelings and be honest about it. For me, I had a hard time admitting that I didn't want to see my son, that I didn't feel a connection with him. And I was embarrassed by that and ashamed of that, but the more I talked to other families, I realized that's not uncommon. And it's not a character flaw in myself. It's a natural thing that happens when you're going through trauma.

Rita: Tell us about Hand to Hold.

Kelli: I would be happy to tell you about Hand to Hold. I really struggled in the beginning after Jackson was born to find local support. I really was looking for a support group or other parents. And I really wanted advice on the challenges that he was going to face - you know, first his pediatrician, and an occupational therapist, and advice on managing multiple medications, and working while having a medically fragile child. So I just began to look in my area. And we were truly shocked at the lack of services. There were a lot of services for the baby. We have early childhood intervention here, so that was our first line of defense for Jackson getting assessed and getting follow-up care.  But for the family there really wasn't anything. And so I began to look at what was offered by other organizations and kind of where there were gaps, and began to talk to other families about what support do they wish they had had, and what would have made a difference. And then really I started working closely with a couple of NICU directors here in Austin and talking about what I felt would have improved my stay and Jackson's stay. And they were very open to that constructive feedback. And so I decided that I wanted to start an organization to help these families and provide those services. I joke now, if I'd have known how hard this was all going to be, I don't think I would have ever done it. So I'm really glad that I didn't know that it was going to be so challenging.

It's morphed and changed through the years. It started as a program under another nonprofit, but we grew very quickly and realized that we needed to be our own stand-alone. So we are a 501(c)(3) nonprofit organization. We're based in Austin, but we provide support to families across the country. We have a peer-to-peer support program that is completely free. And what we do is we match you with a trained NICU graduate parent who's had a similar story. So if you're the mom of a 24-weeker, then we want to match you with another mom of a 24-weeker. And we do matches for fathers, as well. And we match based on the birth experience, but also the diagnosis of the baby. So if you have a baby that's born with a heart defect or any kind of special healthcare need, we look for other families that have had that similar diagnosis because we believe that's really what's going to provide you the most support and understanding - (that) is another parent who has walked in your shoes. Because I think if you were to match up a NICU graduate mom who was in the NICU for two weeks and she's supposed to support someone who's going to be there for four months - while all NICU stays are very traumatic - this other new parent's is going to experience a lot of different challenges. So again, that's what we do, and we have trained social workers who monitor the matches and work with the volunteer and the family receiving support.

And then we have a very active online social community. So we have an online forum where parents can ask questions of other families and of our social workers and receive support. And we just launched a podcast. We are very, very proud of our podcast. It's called "NICU Now." We've launched our first 15 episodes, but we have fans from many more. And this is really meant for bringing support directly to the parents who may not have support in their area. We took the topics that we often address in our support groups locally and turn them into interviews with other NICU families and NICU professionals, therapists, counselors.  So that any parent, no matter where they are, can have access to online support and hear stories of other families. And like I said, we are very excited about this. I'm hoping to continue to grow it. But we launched in February, and we've had more than 10,000 listeners and downloads in 37 countries. So we believe we're onto something special, just as you all are, and really filling gap and a need for families.

And then locally we have what we call ambassadors. Those are trained Hand to Hold staff that work in the hospitals. And they visit with families at their bedside. And they run the support groups. They do sibling education classes and special events and provide educational resources. So we are working very hard to expand that program to other hospitals. We would like to see Hand to Hold ambassadors in hospitals across the country. So that is our strategy right now, as we work to identify hospitals that are interested in partnering with us to have that level of support.

Rita: So, Kelli that is my question. What is the beginning point, the chain of communication, for a family to access Hand to Hold? So there are actually folks that are in the hospital and present that can speak to families so that they can start the process or...

Kelli: It's both. It really is. If you're online and you Google NICU, hopefully one of the first websites you're gonna find is Hand to Hold. And we have one of the leading websites, more than 300,000 unique visitors this past year. And so no matter where you are, if you're Googling NICU support, hopefully you will find us. Through our website, you can request support, no matter what hospital you're in and connect with our social workers and peer mentors. Again, with the podcast, if you have a smartphone or a cellphone, you can search for "NICU Now" on Stitcher and iTunes. So you can access us pretty much anywhere you are in the country. And then here locally, we have the ambassadors who are working in the hospitals. But we want to take that program and grow across the country and actually have a physical presence in hospitals.

Rita: That's awesome. And so when did you start this?

Kelli: Like I said, there's been lots of starts and stops and it's morphed over time. So Hand to Hold is technically celebrating our 7th birthday in September, but I started a couple of years before that as I met with families across the country and I did my kind of unscientific surveys of families and hospitals of what support is available in their areas and what did they wish they had. And so I started, again, as a program under another nonprofit about 10 years ago, and then was there for a year. And then, finally it launched under my own 501(c)(3) 7 years ago.

Rita: And for a hospital that might be interested in working with you, do they just contact you through the site or...

Kelli: Yes. Yes. We want them to connect with us. So it's Hand to Hold, handtohold.org, handtohold.org. And I'm Kelli, K-E-L-L-I, so kelli@handtohold.org, it goes directly to me. Or if they go on our website, there is a link there for NICU professionals and it'll take them...they can preview our educational resources. We have an online store. So if they want to order a sample pack of our educational resources, they're available through our store. We have a wonderful program that's called the Milestone Bead Program. And we're really seeing a lot of interest across the country from hospitals in implementing this program because we've had so much success here locally. And what we've done is… there are lots of different bead programs. I'm sure parents listening today have different bead programs in their hospitals, but we really wanted ours to focus on the milestones. And so you receive a stork, a really pretty stork necklace, when your baby is born. And then you continue to add to that with each pound the baby gains and the first bath and the first hold and all of the major milestones. And we've really been amazed at what a comfort this is to families, how much they look forward to the milestones. That it has actually become a teaching tool for some of the hospitals with their families, in kind of helping families to understand the next milestone and growth phase for the baby, and just a form of celebration. So often, we don't celebrate in the NICU. It can be a sad place. You might celebrate one day and have a major setback the next.

So we really want to bring joy and happiness and a lot of inspiration to the NICU. I think it's really important for NICU families to see NICU graduates and to hear their stories. So right now, we have "NICU Now," which is really meant, like I said, for support while you're in the NICU. We have a new podcast that we will be launching in September called "NICU Heroes." And that is specifically for NICU professionals to educate them on the emotional challenges that NICU parents face, help them learn to be strong communicators with our families, and help us through trauma and prepare for discharge. And then finally in January, we'll be launching "NICU and Beyond." And that is to be our stories of inspiration and hope for families. One of the first kids that we recently interviewed, a NICU graduate who has just recently been drafted to the Kansas City Royals. And there's so many amazing stories that we want to bring to NICU families so that they can see all the potential of their children, no matter what challenges their child may have. That really…it took me a while to come to terms with that. I just was in such deep despair thinking about my son being blind or having cerebral palsy and what kind of life was he going to have. But a very wise nurse encouraged me to go to the NICU reunion. Our hospital was hosting a NICU reunion for all the graduates to come back and see doctors and nurses. And it's kind of a carnival-like atmosphere. And I was like, "I'm not a NICU graduate. I shouldn't go." And she was like, "Please go down there and see these families."

And when I did it just changed everything for me to see these smiling, beautiful, amazing kids - some with walkers and wheelchairs and oxygen-dependent and blind. I mean, it didn't matter. These were happy children living very full lives, amazing families. And it just really helped me to kind of settle in and embrace the fact that, yes, I didn't have the storybook ending that I had planned. I didn't have the delivery I planned. And this is not what I thought my life was gonna be. But it can still be amazing. And in my case, I think it's even more amazing. I think it changed me profoundly. I feel that I have found my purpose. And I'm doing amazing work for a lot of families and that gives me such joy. And although I would never, never want my son to have to go through that experience again, I see what kind of person it has made him, as well. And I'm just so proud of what all he's overcome and just knowing that he's a fighter. I don't think there's much you could give him that he couldn't overcome. And so you can find joy even in the darkest experiences.

Rita: That's true. Well, you certainly have done a magnificent job in directing your challenges. I'm interested, have there been any studies done that would take the data and quantify it in some way about the impact this whole Hand to Hold has had with families?

Kelli: Well, not Hand to Hold specifically. We are hoping to do that in the very near future. I was just talking to someone last week who does research and was interested in helping us dig deeper into the impact. But there are very large national studies that are on peer-to-peer support specifically for all medical conditions. I think it kind of got started maybe in the cancer community, having a peer mentor. But we know the just dramatic impact in having someone else to help hold your hand and guide you through those experiences, what that can do to mitigate long-term emotional challenges. And the National Perinatal Association put together a work group. And this work group was made up of neonatologists and social workers, NICU parents, developmental specialists. I mean, you name it, they were represented as part of this work group who came together for more than a year and looked at what they call psycho-social support and NICU families. And they published new standards, new guidelines of what they recommend for NICUs across the country. And they published these guidelines in the "Journal of Perinatology" last year. And so Hand to Hold is really taking these guidelines and working with hospitals to help them evaluate.

Everyone wants to say they have family-centered care, family-integrated care, but sometimes what they feel is family-centered care is not having the most impact that they could have for families. So we're trying to help hospitals kind of identify what are they doing well? Where could they improve? How do they fill those gaps? Sharing the best practices from hospitals in other areas of the country. So although, like you said, not a specific study on Hand to Hold, but there are so many studies out there saying how important it is: one, to help families identify early anxiety disorders and mental health issues, to ensure that they're able to bond early with the baby, and to teach them very early how to care for the baby.

I talk a lot about a very wise nurse who wanted me to change a diaper. And Jackson was five days old. He had had heart surgery that day. And I just didn't feel like I was capable of doing that. I hadn't held him yet, hadn't fed him. I touched him with the tip of my finger. And now the nurse is saying she wants me to change his diaper. It's hard to even describe to you how small these diapers are. We've come a long way. Jackson's was actually really too big for him. And through amazing work with Huggies, they have now come out with the Nano Preemie Diaper that fits a baby that's less than two pounds. But it was just remarkable how terrified I was to change a diaper - something I'd done so many times throughout my childhood as I cared for my sister and was a babysitter and cared for other friends' babies.  But when it comes to changing a diaper on a one-pound baby, it's a very different experience. And so the nurse could have probably done it in 30 seconds, but she took 10 minutes or more to assure me and calm me and walk me through the process. We have a great video of it. My hands are trembling as I peeled back those little tabs to change his diaper. But it's a profound experience. We know now it's developmental care. It is teaching the parent a first step of bonding with the baby and caring for the baby. So even these little, small milestones that we often take for granted are just huge and impactful in the psycho-social-emotional support of the family - making sure they feel welcome in the NICU, that they have a role, that they're being taught very early how to care for the babies because we are gonna have to care for these children, these medically fragile children, when they go home. So we need to make sure that we're ready to do that.

Rita: So Kelli, as you think back on those early experiences with your son, if there was to be an intervention that would have had the most effect to help you, as you say, in this developmental process and then helping you self-assess your own situation, would it have been through the hand on the shoulder, an individual? Would that have been the most effective thing? You've made a reference several times to the nurses, and they are unbelievable, but is it another human that sort of takes you by the hand or is it any other type of information delivered in any other way that would have been impactful?

Kelli: Well, for me personally, it would have been someone, very specifically talking to me about what to expect when I walk into the NICU the first time, preparing me for what my baby was going to look like, what the NICU was going to look like, and staying with me to care for me. I had had an emergency C-section. I was in a lot of pain. I was on a lot of medication. And then I'm asked to stand at my baby's bedside and they start telling me all the things that could be wrong with my child. And I just felt faint. I thought I was going to be sick. And so I think just from the very first experience, having that compassionate care. It's not just the baby that's the patient, it's the parent. And so that is what true family-centered care is about. So I think we've come so far since my son was born in improving the environment of the NICU, making sure that it's accessible at all hours. We had certain visitation hours, and I would drive my 45 minutes and get there, and a baby would be having surgery so they would have the NICU unit closed, and I wouldn't be able to see my child. Or I would rush to get there so that I could give him a bath and find out that the nurse had already done it, even though I told her that I wanted to do it. So I think that we have better communication now.

I think the environments are more welcoming. I so wish that every parent had access to another NICU family, another NICU parent. I think social workers are amazing. And I think NICU nurses are fabulous. But I think we're asking a lot of our NICU nurse to deliver this amazing care for the baby, but also meet the emotional needs of the parent. That's a lot to ask. So I really feel like having that NICU graduate parent who understands the experience and can walk through that journey with them and prepare them for next steps, help them process their emotions… And we talk a lot about personal care. So mothers and the father need to be caring for themselves and taking time away from the NICU, eating healthy, talking about their emotions. There's so many different pieces to that. In my circumstance, I think that has just been transformational for the NICU experience. A better design of the NICU with a space for the family and more personal support and better integrating me early on and helping me learn and make me feel welcome to be a part of the baby's care. So that…the parent needs to feel that they are valued, and they need to be reminded that they know their baby better than anybody else and that they are a parent. Even though it may not feel like it, they are the parents and their input is valued.

Rita: Is there specific training for the peer-to-peer NICU graduate families that do that work?

Kelli: Yes. We have worked on our peer training and customized our own training. But we have an evaluation process where you...kind of an intake process, where you're meeting with our social workers and doing an intake questionnaire so we can get to know all about you and your birth experience and your child and kind of your level of ability and how many matches can you do, do you want to do, how much time do you have to give? And our training really focuses around listening and how to be a peer mentor. We are not counselors. We are not medical professionals. We're really meant to be listeners and supporters as our NICU graduate peer-to-peer support program. So we have an online course, and families are able to read these studies and information and best practices for peer mentors. Then like I said, our social workers continue to support our peer mentors, both the volunteer and the parent who's receiving support, to make sure that it is a healthy match and they are receiving ongoing support and that the peer is meeting the expectations of the new parent.

Rita: Well, it's all phenomenal. I cannot thank you enough for the work that you've done. It's really very inspiring.

Kelli: Well, thank you. I say every day it's so much bigger than I ever dreamed or expected. And I just feel so blessed that God has used me and my background to help other families. And I think we're just getting started. I really feel like we're gonna see a lot more growth and be able to reach more families in the very near future.

Chuck: A couple things I'd like to talk about are your support for the siblings, and then support for parents that have lost their child in the NICU.

Kelli: Absolutely.

Chuck: So start with the first one. Start with the siblings. Like one, from the parent's perspective, when they're trying to manage multiple children going through this, what advice do you give them? And the second part of it is in as far as support for the child and their experiences because, often, the parents are away and staying with other family members. And so what advice do you give parents in that regard also?

Kelli: Certainly. Well, it adds a whole level of complexity when you have other children at home. And I don't think there's any way to get around feeling torn between the two - feeling guilty when you're with one child over the other. That's kind of the role of the parent. For all of us, we probably always feel guilty that one of our kids is not getting our attention that they need.  But I feel like we have to kind of let go of that guilt and do our best to call on a support system. I think having the grandparents, the friends, and relatives and really asking someone else to help organize it - ask the mother or the father to organize the calendar and the care plans. It's a lot, so really allowing someone to come in and help you manage your schedule and your calendar and all that needs to happen, from car pool, getting kids to school and packed lunches. And our fur babies, we talk about our pets too. And they're left on their own.

So allowing...when people tell you they want to help, give them something to do. I really feel like often times, they don't know. They don't know what to say or do, but if you say, "Could you pick up my child every Tuesday and Thursday and take them to gymnastics?" they will do that for you. "Could you walk my dog? Could you cut my yard?" Be specific. And don't be embarrassed. And know that at some point in your life, it will come full circle and you'll be able to return all of those favors over time. And so I just feel very strongly about allowing people to help you during that time, especially when you have other children. And what I find is that it's pretty stressful on the relationship between mother and father because often times, it may be the father who's home, and he's caring for the siblings. And the mother is in the NICU.

And so just ensure that you have time together and that you're not always separated, caring for the different needs of your children. And switching out. I think I've seen it where the mom did all the care in the NICU, and the dad didn't feel bonded or really feel like they had another baby and feel connected to that baby. So (it is) very important for both parents to have a role in the NICU.

And so we have sibling education classes that we do once a month in our hospitals that we serve. And we bring in an Isolette and a baby doll and the leads and monitors so that they can touch and feel all of the different components in the NICU and understand why the baby has not come home yet and why mom and dad are away.

And we talk about their emotions. Like what does it feel like that they haven't met their baby yet? And what does it feel like that mom and dad are not at home as much as they used to be? And what might be scaring them? And so we kind of talk at different levels. We have all ages. We work with them at different levels. And we read books about germs and keeping our babies healthy. And for those that meet the age requirement and the health requirement, they make a card or a gift for the baby and are able to go in with their family and see the baby at that time and we do family photos. And then they come back and have ice cream. So we love… We call it Sibling Sundays and it's very special for us to do. And we've heard from parents that it's extremely impactful for them. That some parents who have not sought out support and gone to support groups who have come to Sibling Sundays, it really is a time for them to connect and share their emotions with the other parents, as well. So for those that don't live in our area and have Hand to Hold in their unit, we have coloring books for siblings, and we also have a video that is a tour of the NICU that is narrated by my son, who is a NICU graduate, and we did that several years ago. So that's what we do for siblings.

And then for our bereaved families, it just depends, it depends on what the experience is. So if we know that there's gonna be fetal demise and the baby is not going to survive birth, we help parents with a birth plan of what might they expect? What decisions are going to need to be made? What are their rights or some things they want to consider that they might not have considered? And to help them prepare for that loss. We also, if there is a loss in the NICU, we provide support just like we would for any other NICU family. We match you with another family who has experienced a similar loss to provide that ongoing support. We also have our social workers that can work individually with families, phone and email, and provide support to them. And then we've also produced a couple of podcasts specifically on bereavement. And it is my hope that we do a whole series on bereavement because there are so many issues and challenges that go with losing a child.

Chuck: The other aspect of this that you were talking about is how this has changed you. Talk about that and from your experience with your son to where you are now, like what is that change? And what are the differences that you've noticed within yourself?

Kelli: There's so many different layers. There's a fearlessness that I didn't know that I had, of taking on something so daunting. I think it's just really helped me find my voice. I really had to advocate really hard for Jack and to get the services he needed and meet all his medical requirements. So I think really finding my voice, finding out how strong I was. And I think that translates even into with Hand to Hold, realizing that I can make a difference. It doesn't have to be the same way for other families. Sometimes I feel like if I haven't met every need, that I've failed, and I have to stop and look at how many families we have served and with our growth plan, how many more we will service and just really this inner drive. I think Jackson has taught me a lot about this fearlessness, this joy for life, overcoming challenges, and just the empathy and love that he has for other children. And I would say that this guides me in what I do, as well.

I think that I've changed for the better. I hope I have. I feel so much better about the work I do now. I used to work in public relations. And I loved my job, but it's a very high stress job. And I worked on things that I don't look back now and think they really mattered. All those press releases and press conferences and stories I wrote and meetings I had, all of that faded away. I don't really see what major difference in the world it made. I hope with Hand to Hold, that it is a legacy. I look forward to passing it onto the next executive director that can just take it and continue to grow it. And like Rita said, maybe someday, not in the too distant future, there will be a hand to hold, an individual hand to hold, a warm body, someone who is providing that level of comfort care for every NICU family and meeting the different cultural needs and language needs and just looking at that family as an individual, not just checking off the boxes and handing them a brochure and sending them a website address. We really want to profoundly impact people with that emotional care.

Chuck: Speaking of profoundly, I think my first experience in the NICU, I don't think there is anything that's impacted me more profoundly than the first time I toured it.  We knew our son was going to be born and be in the NICU and so they let us tour it beforehand. And I remember pushing my wife in a wheelchair through the NICU and I was just saying, "Oh. It's so horrible." I never knew it existed. And you see all these children.  And all these doctors that have devoted their lives and nurses to saving these kids and giving them any chance at life. And one, I never knew that was even a part of life. And, as much as I've been around kids, this was like a whole new experience. And with seeing that dedication, how they dedicate their life to giving these kids a chance, and then being in the NICU for two and a half months and watching your own son fight for his life every day… You know, there's not many things in my life that have affected me more profoundly than that. So I think it is a very transformational experience just seeing it and experiencing it all. So I commend you for all the work you're doing.

Kelli: Well, this was such a pleasure. I'm very honored that you asked me to be a part of it.

Chuck: Well, we're super excited that you were here. So keep up all your great work with everything you're doing.