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Heather Barrow joins Rosemary Nickel to talk about an important topic – high risk pregnancies. Today, she shares her personal story on her high risk pregnancy and why she wanted to make a difference in Tampa, Florida and all over the US. She is the founder of High Risk Hope, a charity organization that gives the much needed support and encouragement to other moms on bed rest or who have a child in the NICU. Rosemary and Heather talk about the things you can do to comfort a high risk pregnancy mom, things not to say, and how you can help someone on today’s show.
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I followed every rule and still ruptured at 24 weeks. I didn’t smoke, do drugs or alcohol; I didn’t even drink coffee.
I would love to say the guilt goes away. I still have guilt.
Anyone out there reaching out to one family helps our families here in some way.
About Our Guest
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Elizabeth Sarquis is the Co-founder and CEO of the Global Gaming Initiative, which is a new concept in gaming to empower the smartphone generation to impact social change through the power of play. Before founding Global Gaming Initiative, Elizabeth was the CEO of Activation, a company that focused on social issues through powerful films. Born in Colombia, Elizabeth was transplanted to Minnesota as a child, where she was exposed for the first time to the vast divides that often separate people from different worlds. This experience ultimately shaped her life’s calling as a champion of child development issues and education. She has worked extensively with United Way, the National Eating Disorders Association, Park Nicollet Health Services, and others to advocate solutions to youth diseases, disorders, and systemic impediments to positive growth.
Elizabeth is a board member of Games for Change (NYC), National Eating Disorder Association (NYC) and the Melrose Eating Disorder Treatment Center in Minneapolis. Elizabeth holds a Master’s Degree in Child and Adolescent Development, and a degree in Human Physiology and Political Science, both from the University of Minnesota. In 2014, Elizabeth received the Ellis Island Medal of Honor from the National Ethnic Coalition Organization. Elizabeth currently lives in Minneapolis and has three children.
Our society is so focused on so much negativity and competition that it makes it difficult for children.
Transcript
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Rosemary Nickel:
Hi, this is Rosemary Nickel with Motivating Other Moms and I’m here today, I am doing a month long series called Podcast with a Purpose and I searched for entrepreneurial moms that has a business that makes a difference in the world. All of us build our businesses to make a difference in the world, but it’s about giving back to the community and making a difference in lives in a really big way and today I have Heather Barrow of High Risk Hope and she happens just to be over the bridge maybe 20 minutes away from me. Welcome Heather!
Heather Barrow:
Thank you so much for having me. I am honored to be here.
Rosemary:
You had a high risk pregnancy, which is why you started this organization. Can you tell me a little bit about your story and what happened to make you start this organization, High Risk Hope?
Heather:
Absolutely. When I was just 24 weeks into my pregnancy with my second child who is my son, Hill, my water broke prematurely and we were emitted to the hospital where we were told we would deliver a very sick baby boy if you were born at 24 weeks gestation and from the very moment we were emitted to the hospital, you know, it’s a terrifying situation to be in. My daughter was full term and we didn’t know what to expect. We immediately started receiving support for our family, our friends, our church, and of course the hospital staff and we decided from that moment we were emitted to labor and delivery that we could go two ways, we could either be positive, optimistic, and hopeful about the pregnancy about our son’s health and future prognosis or we could be terrified, distressed, and upset.
We knew which road would be healthier for me and my son and we decided no matter the outcome we will just have hope that he would be healthy and we ended up staying on complete hospital bed rest. Everybody wants to know, bedpans and all, but for over two months and what that meant was I couldn’t get out of the bed at all. Eventually, we got some privileges, but just had to remain pretty still because of the complications associated with preterm premature rupture of membranes, but Hill was born at 32 weeks gestation and had a relatively short stay in the NICU and needed no breathing support at all.
He’s now a very healthy and very happy 5 year old little boy and when we left the hospital and kept in contact with our doctors and nurses is what we realized our support system was the exception and not the rule and while we were in the hospital we received no type of support from external non-profit and we realized that none of the other patients did either and most of them didn’t have the strong support system that we had.
So, that’s how High Risk Hope evolved. Initially it was our family wanting to give other families the hope that they too could leave the hospital with a healthy baby and when you’re in that type of experience and you’re surrounded by doctors and nurses 24 hours a day who are doing their best to prepare you for the worst, sometimes a small dose of hope and encouragement is all it takes for you to change your attitude and really focus on, okay, what can I do to keep this baby in as long as medical feasible. What we saw in our own family and what we know as the case for our High Risk Hope families is that absolutely plays a roll in lengthening high risk pregnancies and we realized very quickly that our outreach on the high risk side helped to prolong the pregnancies and improve the outcome for their infant and decrease their NICU stays.
It’s just been a really incredible joy for our family to be a part of this and it has grown into something that initially started out, you know, of course out of our house with my husband and I doing the deliveries to very quickly becoming a community based support program and project and as our families have graduated from the hospital and NICU, they’re turning into our volunteers and it’s just been something that has come full circle for our families.
I think our oldest High Risk Hope baby just turned 4. So, we’re kind of growing up with them. It’s been a really neat process.
Rosemary:
I love that. That has to feel really good when you see them growing and thriving.
Heather:
It’s incredible and you know we were at an event recently with some very large non-profits and we were asked about our biggest gift that we had received and while we’re still young in our non-profit, history compared to some of the other big guys in Tampa what I remember and what is probably our most valuable gift is when we were still operating out of my home, we would have what we call assembly parties. We would put together our bed rest baskets and our NICU nap sacks, which are patient support items.
We opened it up to the public through Facebook and we had a mom and an older woman with her and the younger woman needed help up the stairs, which I wasn’t, you know, we didn’t know her, I wasn’t comfortable asking why she needed help until we got about half way through the assembly party and it turns out that she had received a bed rest basket at St. Joes and she had just delivered her son the week before at 23 weeks and he was, of course, still in the NICU, and spent time in the NICU for months after that, but they get to her time and she also brought some items for the bags from the very beginning made us realize how important our outreach was and their family is still very involved with us today and her son is two years old and he is hilarious.
He is a handful and running all over the place, but that was such a special gift to us who were involved in the planning process to really keep us grounded and realize, you know, what an impact we could have if we did this right and if we did it the right way and I hope that we’re doing that.
Rosemary:
As a non-profit when you’re doing a service like that, it’s really hard sometimes while you’re passionate about it, but when you get feedback like that or when you have a moment like that when it’s so beautiful and touching and magic, it makes it all worth while and propels you forward. I would imagine that because you’ve served so many people, you only get little small parts of stories here and there.
Heather:
That’s correct. We know when I put out the numbers the numbers are big and we don’t necessarily hear from all of the moms all the time, but we eventually hear from a good portion of them and what has, if you’ve been on our Facebook page or followed some of our social media, we really consider ourselves a family and we try to, we’re trying to not only support these families on the bed rest side in the hospital, but also through their NICU stay, because that’s a totally different hospital experience and you’ve gone from completely, I don’t want to say control, but you know, having the baby where you know they are to having to trust, you know, a team of taking care of your child when you can’t be there 24 hours a day to when they graduate from the NICU and start to move through typical milestones that are difference for premies.
It’s just really been something that they have allowed us to be apart of, not only because they need support from people who are 2-3 years ahead of them, but because they want to share their children’s milestones with us and that’s a joy. It’s almost like, you know, I have two children, we’re not having more, but that I have all these, I wanna say, my 2,500 High Risk Hope babies that we kind of are watching grow up, so it really makes it rewarding to us and keeps us grounded and makes us realize why we’re doing this.
Rosemary:
That would make a great marketing headline by the way. Mom of 2,500 kids.
Heather:
It’s funny because you never know what your kids are going to say good or bad and I think for the most part we are setting the positive example, but I can just hear it one day, like, you’re spending too much time with the other babies!
Rosemary:
I ran into a couple of families that are very centered like this where they’re helping out and, you know, they have 100s of kids and babies and they all grow up and their kids love it, actually. They become a part of it and so I don’t think you have a problem there. You’re going to be raising some pretty heart-centered kids.
Heather:
Except when they, you know, we joke, but we’re starting to get, which I’m honored; I just attended one of our baby’s christenings and we get invited to birthday parties and I’m always honored to be included, but we kind of joke that we can’t wait for graduations and weddings and that type of thing, but it’s really neat. It’s really neat to be a part of it.
Rosemary:
That will be exciting. Very exciting. So, my niece had two preme babies and her last one actually passed away.
Heather:
Sorry.
Rosemary:
It was, it was a really rough and I felt really bad for her, because her baby was in NICU for like I think 2 or 3 months before she passed away. It was a long haul and I learned a lot that I didn’t know before. It was not something I had to ever deal with. You know, typically you’ve already had your babies so you knew the experience of being able to hold your baby and be with your baby immediately, but that doesn’t happen whenever a premature baby is born.
Heather:
Most of the time no matter how preterm they are, you typically, you know, it took us a few days before we were able to touch our son or hold him and the earlier they are and typically the longer that period is, but you touched on a very important point, which is, our best outcome is that a family leaves the hospital with a healthy baby. I mean, that is why we’re here and that’s the gift we want everyone to receive, but we recognize that’s not always the case and that is why our mission is so important.
Florida is one of the worst states in the nation in terms of premature birth prevention and we’re consistently ranked at the bottom from year to year and it’s something that needs to start getting a little bit more attention, but we do recognize a lot of our moms even if they do have a healthy baby, you know, if we’re interacting with them this year and they do deliver a healthy baby or they leave the hospital with a healthy baby, they often have stories.
So, we try to connect with moms when they get to the point and that’s driven by the moms and dads, that’s driven by the patients, but when they’re ready to start reaching out through the grieving process, we definitely have families who have been through that. I don’t know what that process is like, I’ve never experienced a loss of a child and I can’t directly to relate to a family who has like your niece, but there are other families who can and we try to really connect them and help them get them through to the extent that they can the different cycles of grief.
Rosemary:
It was an eye opening experience. She was at All Children’s and I learned a lot, one of going through them making the decision to take ’em off of all the machines and letting them go at some point. Sometimes you have to make that decision. I can’t imagine being the mom to make that decision, but then there’s the process of, she had never held her baby and all that time she was never able to hold her baby. Three months and the only time she got to hold her baby was when she made that decision to take her off everything and she got to dress her in a dress for the first time and hold her for the first and the first time is the last time.
Heather:
It’s devastating.
Rosemary:
It was devastating and she couldn’t stay there. She didn’t want to be there when the baby died. She didn’t want to be holding her and there’s some people that can and there’s some people that can’t and what’s beautiful is that there’s volunteers that come in and will do that for you, so that you don’t feel like your baby is just laying there dying without compassion. I just can’t imagine how difficult that is to walk away.
Heather:
I can’t imagine. I’m not sure what I’d do in that situation either. It’s such a personally choice.
Rosemary:
It is such a personal choice. On the other hand, my neighbor who tried really hard to have babies, she finally carried one to full term and it passed away before she gave birth. The day before. They had a funeral for her and she asked me to take pictures for her. It was really hard to watch. I learned so much from that experience as well. We had a puppy at the time and I had a baby and I could see her light on in her room and I knew that her milk would be dropping and that she should be in there at 2 o clock in the morning while I’m walking the puppy that she should be in there holding her baby, nursing her baby. It was so hard to watch and the pain that it caused their family.
That day, that was probably the worst day. I’ve never had to deal with death a whole lot, but the day that she had the funeral and I was taking pictures for her and everybody had gone and it was just her and her baby and she was holding her baby and it looked so alive and I said, how do you leave your baby? How? How do you hand your baby over to somebody knowing that you’ll never see that baby again? I just can’t imagine moms go through through that and it’s a long journey of mourning and healing and you don’t always heal. You have a section within your organization that touches on that, correct?
Heather:
We do and you know, it’s a difficult…premature birth, high risk pregnancies, infant loss, and mortality, they’re all taboo subjects that no body is comfortable talking about and it’s something that even when you experience the loss of a child, I think that these moms like you touched on or even, you know, when you do eventually leave the hospital with a healthy baby, it doesn’t just go away. Even now, we’re almost 6 years past my hospital stay and still can’t wash my hands in our hospital, because the smell of the soap.
I mean, it might sound so bizarre, but it’s just that smell brings back so many scary and, you know, for me it’s the soap, for another mom it might be the lights or, you know, there’s almost a sense of post-traumatic stress that these families experience either through the high risk side, through the NICU side, and certainly through infant loss, but as you said, you know, it doesn’t just end there. I mean, there’s always going to be moment that these families don’t get to experience and that..your niece and your friend are the reason why we’re here. We don’t want anyone to have to experience that loss, we want everybody to have the opportunity to have a healthy, happy life and babies who are born prematurely not only face challenges in their immediate life, but they face challenges throughout their life.
It’s something that we think should be focused on, you know, more on a state and federal level, but the more money we pour into insuring the highest risk pregnancies make it to full term, the less complications they’re going to have in their childhood and the less likely they’re going to likely to develop some adult diseases associated with premature birth and it’s really a life long problem depending on the complications that the children face.
So, it’s so much more than what we do in the first few months as we grow, we start to recognize needs. Even something, you know, I can send you this just if you’re interested, but some studies that have been released this year focused on a child’s time in the NICU and whether or not a family was able to read and specifically the mother sing to the child. It was two separate studies and one study focused on when the mother sang to the child or a voice recording was played to the child, he or she was able to breath and sallow quicker, which equates to a quicker discharge from the NICU.
The other study was focused on speaking and reading to the child in the NICU and it followed the baby for 18 months and it noted drastic improvements in speech and language development, which we know correlates to reading and learning later on. So, all of these studies are starting to pinpoint things not just on the health, but on the learning and development side that show what we do for these premes while they’re in the NICU helps them throughout their life and it’s just really interesting to see these, you know, it’s exciting to see from my perspective the dollars that are being put into this funding and it’s going to equate to more funding and more research and these are two small studies and hopefully it’ll lend to more larger studies that will confirm that.
Rosemary:
I’m glad you mentioned that. That was something I picked up on when I was in there. I noticed that the baby wasn’t getting talked to much. The nurses were just in and out kind of doing their jobs and I encouraged my niece to sing and touch it if she could. Sometimes they don’t even let you touch the babies and talk to it as much as possible. How can, I know your volunteers may do this, but how can someone like me who hasn’t been around it much, how can they help and support a friend a family member? A lot of people tend to stay away.
Heather:
Because they’re scared to say the wrong thing and even me, who I feel like I would consider myself by this point, you know, hospital bed rest, I don’t know if I should expert and NICU, but sometimes you never know what the mom is, or dad, their state of mind is and what they want to hear from you, but it’s kind of different on the bed rest side. There’s so much that people can do from showing up and decorating the hospital room to bringing a home cook meal.
We all know hospital meals can get old very quickly to if they’re older children at home, you know, my daughter was two years old at the time and my husband worked full time and we needed help with our daughter and my friends just jumped right in from taking her to school to cooking her meals to bringing her to the hospital. We are around the holidays, the holidays are the most difficult time to be in a hospital bed, especially when you’re older children are at home.
So, arrange for something fun like cooking decorating or for us it was around Easter, my friends arranged for an Easter egg hunt in my hospital room and there were just so many ways to lift the spirits of someone in the hospital. You don’t think about it, but you’re contributing to the health of their child by making the day a little bit brighter for your friend and obviously entertainment items like books, DVDs, all those types of things. Use magazine to drop off and brighten their day and while you’re there maybe see if there’s someone who doesn’t have a lot of visitors and do the same thing for them. You’d be surprised at how far your gesture would go.
On the NICU side it’s a little bit different. I think the number one thing I say when I say a new NICU family, the first thing I say, congratulations on the birth of your baby. It doesn’t matter if the baby is 23 weeks or 39 weeks, they are a new baby and they deserve to be celebrated and I think a lot of times people are hesitant to say congratulations, because the baby is in intensive care, but it absolutely deserves a warm welcome and that is never going to be the wrong thing to do.
A lot of times with new moms, especially of very premature babies, they have to deliver via C-section for the most part and for those of you who have had a C-section, you realize that you can’t drive for at least two weeks, so what happens when you’re discharged from the hospital, especially if they’re younger children at home, a lot of NICUS don’t allow young children in the NICU, there’s the husband or partner that can drive, the mother who can not, they can’t leave the baby at home.
So, what we call a NICU shuttle, but a friend setting up a NICU shuttle that, no obligations, no asking about the baby’s health, just showing up at your friend’s house and driving her to the NICU, dropping her off and picking her up so she can spend time with her baby without having to worry about how to get there and a lot of times new NICU moms are hesitant to ask for that help, because they’ve been in the hospital for months receiving help and they feel like they’ve used up all of their friend’s time, but that’s been one our moms biggest things and it’s practical for you to do with the exception of, you know, to purchase gas.
Another thing that is great is helping to decorate the baby’s room. You’re probably not going to be able to bring the decorations to the hospital like you did on the high risk side, but you could put a basket or a Christmas basket or Easter basket and leave it on your friend’s doorstep at home, so that she can take it to the NICU and brighten her babies room and just really adds a little bit of touch from home, especially if the baby is going to be there for several months.
The typical things you do for a new mom when they bring their baby home is extra special and the babies in the NICU, like a meal delivery service for friends and family. We always encourage the same type of thing. Make sure that everyone involved is someone who will know to just deliver the meal, not to come inside and ask for health details about the baby and that’s really hard a lot of times for mom to have to rehash, you know, any times of surgeries or procedures or treatments their child may have.
It’s just really is about helping and taking one more thing off her list and one thing that we’re talking about the holidays right now is everyone’s holiday to do less. Maybe getting a group of friend’s together and help, if you have a Christmas tree, help decorate the tree or do the shopping list or help clean their house or just anything that will take obligations off of their plates so that they can focus on their child that’s in the hospital without having guilt associated with their family at home. I know you asked for a short list. That was a long list.
Rosemary:
That was a great list and you touched a couple of times about not talking about it. Sometimes it’s good to talk about it, because you get that out of your system and sometimes they wanna share. How do you stay astute as to when is it time, you know, what if they want to share and what do you not say?
Heather:
I think the best thing to do is follow the lead of the parent. If you had had, it’s difficult for me to do that sometime, because I do have experience in the NICU, but my experience is completely different from every other baby and family in the NICU and it’s hard to follow that person’s lead sometimes. I think that you listen and you offer encouragement about the baby. I think that it’s okay to say, this baby is going be completely happy and going to pull through this, because it’s got such great parents and be encouraging.
I think that, you know, the things that you shouldn’t say are things that are going to cause anymore stress in the family. They have doctors and nurses that they are going to be asking all types of medical questions and I think it’s best always left to the medical professionals and I think from a friend’s perspective the most positive thing would be to offer the support and encouragement that that baby is going to make it home and that that family is going to be celebrating that miracle this time next year. You know, a lot of times like we had discussed, maybe the result is not the optimal result, but at that point in time the difference between being hopeful and encouragement and not being hopeful is not going to help anybody when the future is unknown for everybody.
Rosemary:
So, what is the right thing to say? I’m assuming it would be, how can I help you? How can I make a difference? Can I clean your house? What happens when they start saying no and they really do need the help, what can you do help them get comfortable with accepting the help?
Heather:
I think there’s fine line between being too aggressive and accepting help that they really need it. In the beginning when the child is born, they might just need some space to re-adjust. I think that we found with friends and family and what they’ve told us is when they say, I’m going to the grocery store, send them a text, I’m going to the grocery store, can I pick up xx, milk, whatever, bread and this for you? And kind of backing off if they don’t want you to clean their house and they say no thank you, you know, backing off a little bit, but still offering the help, but I think at the end of the day, they’re still kind of pushing back, you might just want to give them a little bit of time.
That happens sometimes. They may need a week or two settle back in and then they realize how overwhelming the situation might be and they might reach back out to you, but just kind of checking in once or twice a week, be it text or phone call and just being available for when they need it.
Rosemary:
How do you guys, when you first started your organization, how did you find out and be able to reach out to moms that were on bed rest?
Heather:
We are fortunate, our family was very fortunate to have such a strong relationship with our doctors and nurses that we started at the hospital where I was which was St. Joes, which just happens to be a level three NICU like All Children’s and also Tampa General Hospital. I kind of went to them and said this is what I’d like to do, we went with a few other moms who had high risk pregnancies and who had supported me and wanted to become involved with High Risk Hope. We went into a meeting with, we had kind of ironed out the details and we expected them to want to push it off a little bit, but they said, when can you start? We started the next week and we haven’t stopped.
I think the hospitals from our perspective, the same thing when we decided we wanted to make an expansion to Tampa General Hospital. We went and met with hospital administration and we kind of thought the same thing, because our relationships weren’t as strong at TGH, but they were exactly the same way. They said, when can you start? And our story is the same there.
So, I think the hospitals recognize that there are needs that they’re not always going to be able to meet and we’ve been very fortunate that they’ve given us the access to their patients that they have and the reason they do that is we’re respectful and we honor the hospital procedures certainly related to hi-up, but also just working with the doctors and nurses. We try not to be a burden at any time, but they know and St. Joes will certainly tell you, as will TGH, we’re often listed at the top of reasons why patients are satisfied. So, we’re bringing them happier, healthier patients and that makes the hospitals happy.
Rosemary:
You had mentioned that Florida is one of the worst states for high risk pregnancy. I know from two younger people, neither one of them had health insurance. No, one of them did and the other one didn’t, but they both ended up in the same place, like, I live in Pinellas country and evidently, I don’t know, I don’t understand this, it makes zero sense to me and I don’t know if it’s true or if they’re just young and don’t know yet, but they both told me, one with insurance and one without, one had really good doctor care, loved it, and she ended up with a high risk pregnancy, and there was only one place in Pinellas county and that was in St. Petersburg that handles high risk pregnancies and you wait for like three or four hours in the waiting room and the care is awful from what I understand. Is that kind of common throughout the state of Florida?
Heather:
You know, I can’t speak to the entire state and our region, we’re very fortunate to have the three hospitals that I mentioned before, which specifically, Tampa General Hospital, and All Children’s is what is called RPICC, which basically means they’re authorized to treat patients regardless of their insurance and they are for premature infants, they are two of the best certainly in the State, probably beyond that and the care that they provide at the hospital level as does St. Joes is the same for all of the babies. They are exceptional care. When you talk about doctors and nurses, certainly the lack of health care prior to hospitalization is definitely a contributing factor as to why pregnancies could be high risk or women are not getting the prenatal care that they need before they get to that point.
In my case, I had exceptional prenatal care. I followed every rule and I still ended up rupturing at 24 weeks. I didn’t smoke cigarettes, I didn’t do drugs, I didn’t drink alcohol, I didn’t even drink coffee, and it happened to me. While it is more likely if you’re in certain high risk groups, it can happen to anyone and it’s just something we need to know more about. We need to know why, I still don’t know why my water broke at 24 weeks. I don’t know if I did get pregnant, if it could happen again.
For our family, it wasn’t something we were willing to gamble on, because it typically does happen earlier and the outcomes are worse and in my situation and in my pregnancy, at least at the time, but it’s something that I think sometimes families with maybe with great insurance and with low risk factors think that it’s not going to happen to them, then it certainly can and that’s why it’s our whole state’s problem. The whole nation’s problem.
As our babies grow up, they have babies, and it’s something that I don’t want my daughter to have to experience what our family went through although it ended up being positive and we’re blessed now with High Risk Hope. I want by the time she has children and my son, I want this to be something that is on the way out or out and it’s not going to get there without people like us and people like you getting the message out on behalf of all of our Floridians, not just the ones without health insurance.
Rosemary:
Yeah, the hospitals are fantastic. What I’m asking about is the prenatal care. So, one said she had a really great experience up until they said she was high risk and they said they couldn’t take care of it and then it was just one, evidently, one place in the area that does high risk. I kind of find that hard to believe. I just can’t wrap my head around that. What kind of, what rights should moms know about? Do you have anything that supports moms that don’t have to have bed rest, but to know what their rights are and the questions to ask while they’re going through a high risk pregnancy?
Heather:
Currently our outreach is focused on women and families who are already in the hospital and we are constantly evaluate ways to provide better services to all pregnant women, especially with women on high risk and we developed just this month an advisory committee that we’re staffing with (#32:30?) and OBGYN in the area and several other medical professionals, but also local business men and women, so we can evaluate just the types of things you’re talking about. We currently don’t have those resources. If your friend were to call us, we would certainly try to direct her to somebody that could help her, but we don’t have those capabilities at the current time.
Rosemary:
If anybody’s listening, this isn’t just a Florida problem, I’m sure. So, we don’t want to narrow this down to just Florida, because this would be great, this organization, as a source throughout the world, I would imagine, everywhere. This is a needed thing everywhere to get support in a high risk situation like this, but you do have recommendations for while you’re staying in the hospital, your pregnancy complications, loss and grief and how to treat yourself. I would say probably how to treat yourself is probably the number one thing.
Heather:
To put yourself to something special, is that what you’re..
Rosemary:
Take care of yourself, make sure..not beat yourself up. I’m sure there’s a lot of guilt of what did I do wrong, this is my fault..
Heather:
There’s still..There’s always, I would love to say the guilt goes away. I still have guilt. You know, every sniffle, I’m like, well, is that because..It’s just part of being a mother. I’m sure you have guilt in different areas, but from a mom’s perspective unless you’re following into one of those categories as a personal choice that puts you at higher risk and then a lot of times there are things that are contributing factors to those, but as a mom, you have to let go of the guilt associated with all of this and the best thing you can do for yourself on home or hospital bed rest is what you said and that’s take care of yourself and make sure that you are okay and that you’re trying to focus on the positive and that’s going to be the best environment for your baby, always. It’s always going to be.
Sometimes, you’re able to do that on your own and sometimes you’re not and just being able to recognize when you need help, whether it’s from your friends and family on things we just discussed or whether it’s additional medical help. We all know about postpartum depression. There is depression that can hit, especially when you’re on bed rest and making sure that women are not ashamed to reach out to their doctors and let them know what’s going on to get help for themselves both before and after the baby is born, because in a typical pregnancy and birth, hormones are all over the place and it’s easy to recognize when you’ve pushed yourself to the limit, but when you factor in hospital stay or whole bed rest stay and then NICU stay for your baby, it’s very important to take care of yourself.
Your husband or partner as well, if you’re not at your best, you’re not going to be able to be at your best for your best and that’s really something I hope that moms walk away from this and realize that they can not do it all on their own.
Rosemary:
One of the ways, you had mentioned you had a great community on Facebook and how you guys stay connected and watch the babies grow. One of the ways you’re building communities is you do a Tot Trot every year?
Heather:
Yes. I wished we had talked to you before, I would have loved for you to come out. That has been incredible. We call it a Tot Trot. It’s a 3k and we just did ours in correlation with World Charity Day, which is the 17, but we decided to do a 3k. We didn’t want to attract the serious runners, we wanted it to be all about the kids and our first year, which was last year, we had about 400 people and definitely had some of our families. This year we had closer to 800 and it was just, we were just full of all of our babies and toddlers and moms and our hospital partners were there and just really gave them a day. Not only to get the world out about premature birth about what we can do to continue to fight this epidemic, but also to give them a day to get out there and compete. It was a great day. It was a neat day for the kids.
Rosemary:
I love that and what a great way to keep building the message. 800 the second time around. 400 the first time around, that is fantastic numbers.
Heather:
Thank you very much.
Rosemary:
It really show how needed it is and how you can make a difference and build a community by just giving from the heart. It really is an amazing organization. You have a hospital survive guide.
Heather:
Or kit. Yes, we have two. We have one for our NICU families, our NICU parent’s handbook, and also our high risk hospital bed rest survival guide.
Rosemary:
And we’re able to go to a website and support a mom on a hospital bed rest and 100% of the online donations fund the HRH projects. What’s in these baskets that you bring to these moms?
Heather:
I was thinking I could show you, but I know we’re just on audio. We, on the bed rest side, it’s absolutely everything they need to survive their hospital bed rest stay. When you check into the hospital, they, you know, certainly provide food and they provide tooth brush, tooth paste, and basically an all in one body wash.
We know as women, especially when you are bed ridden and might not be able to shower as often as you would have at home, you need way more than an all in one body wash, but we include things like, basically all toiletries that you would need from shampoos to adult body wipes or one of our hottest items just so they can freshen up in between sponge baths or showers. Hand sanitizer, soft blanket to replace the hospital one, which often smell like bleach or just scratchy and uncomfortable. We have slippers for moms who are able to get up and go to the bathroom. Hair ties.
On the emotional side, we include journals for them to keep track of their thoughts, but also their doctors and their questions and things. We have a smaller one for kick counts, which are important. We also, if you’ve seen online, we’ve had a calender baby contest this year and we had some of our High Risk Hope babies go online and we had a little voting contesting and our top 12 babies are in our High Risk Hope calender, which replaces our old calender, which was just a plain 12 month calender.
This one, every month is a different High Risk Hope baby, so it shows these beautiful babies and how well they’re doing now and we have at the very bottom a very small picture of them in the NICU and also their stories, so we hope that it’s a dose of daily encouragement for our families that it may look tough now, but we hope their babies are going to be up there on the calender someday and just items such as pens and ear plugs, because it’s loud in the hospital. Eye masks. Those types of things, but it’s over 50 items and the bed rest basket and like I think I mentioned earlier, we have over a 100 volunteers, probably 80-90% of them are former High Risk Hope families or moms and they typically are the ones delivering the bed rest basket, so when patients do want to talk, we have trained volunteers there not only trained from the High Risk Hope side, but also as a former bed rest mom who will typically bust out their phone and show them photos of their child and how they’re doing.
On the NICU side, we have our NICU knapsacks, which are smaller versions of our bed rest basket. You know, at this point the child is born and the parents may not necessarily be staying or may not have the opportunity to stay at the hospital, but it’s more of a welcome package, a congratulations package with our NICU handbook and also some basic toiletries items that they can use while they’re in the NICU. One of the favorites, which is also in the bed rest basket is a large acrylic tumbler, which they can fill with water, especially our breast feeding moms, it’s really important for them to stay hydrated and a lot of times, you know, getting up and refilling a small Styrofoam cup is cumbersome.
Just same time of thing, the journals, the calenders, all types of, we used to include a disposable camera, but we’ve realized since we’ve run out that there are kind of hard to find now with everyone’s cellphone cameras, but we’re always looking for ways to make their NICU experience a little bit easier.
And, on the guides, those are on our website. So, for our moms who are not in Tampa, those are free to download on our website. They are PDFs of all the printed materials that we include in our bed rest basket and NICU knapsacks.
Rosemary:
If you’re not in Tampa, check out her site. She has pictures and ideas of what to do. You can make your own and take them to your friends or to a hospital if you’ve experienced it. I know, you know, the ones that I’ve known that have experienced the high risk and the NICU, also want to give back. They’re very passionate about it. You don’t want anybody to go through it.
Heather:
No and you kind of touched on something, we get calls because there’s no one like us out there. We get calls from people all over the country wanting to give back and at some point we will be outside of the state of Florida and we’re always looking for potential future expansions, but at the same time, when I did this, when I started High Risk Hope, I did it on my own. We didn’t have a big budget to hirer attorneys. You know, I have a tax background, which helps with our forms, but I had a difficult time connecting with established non-profits and getting guidance on how to do this and it was almost like I was viewed as a competitor, which I think is very strange, because we’re not competing. We should be collaborating
We always wanna help. If anybody needs advice or wants to talk with me about something that they’d consider, you know, even if it has nothing to do with High Risk Hope, we always make time to reach out to those families, because I know no matter how well we do, we will never reach every single family and need. It’s impossible for any single non-profit to do that. So, anyone out there reaching out to one family helps our families here in some way and we want to encourage people to reach out to us and we’ll give you as much guidance as we can on what we experienced and on the growth over the past few years.
Rosemary:
There was a previous episode that I had. I will put a link in the show notes along with a link to your High Risk Hope, but I interviewed an entrepreneurial mom who specializes in creating a non-profit as well. So, I’ll put a link to that show within the show notes and do reach out and ask for help from any organizations that you can. I would think that most of them would not be competitive, it being a non-profit and wanting to help communities. It’s really interesting that you got that feedback. That’s fascinating.
Heather:
I think everyone’s time is valuable and I think that..it’s just part of how things are done unfortunately and now this is not something that happened locally. People, our local non-profit community is very supportive, but this was something that was in line with our outreach in another state. So, we hope to help other people if they’re looking to do something similar.
Rosemary:
I can see this getting very big. Heather, thank you so much. This was insightful. I love what you’re doing. It is so needed throughout all communities. If anybody’s interested, I will have Heather’s information on the website where you can reach out to her. If you’re interested in donating and helping another mom, please go to HighRiskHope.org and there is a button right at the bottom that says support a mom on hospital bed rest.
Heather:
Thank you Rosemary for having me. This was wonderful and I hope to meet you in person. Come over the bridge or I’ll come over there.
Rosemary:
Absolutely. We will definitely meet. Your Facebook fan page, is that High Risk Hope?
Heather:
Correct.
Rosemary:
Awesome. So, if you’re a mom who has been through that or you’re in the hospital and you happening to be listening to this or you have a friend that you can share this episode with, do that and then have them go like the page, because they can get support from within that page, I would imagine, while they’re in the hospital.
Heather:
Absolutely, our moms post everyday encourage stories and photos of their baby, which is great to see while you’re in the hospital.
Rosemary:
Thank you, Heather.
Heather:
Thank you. Have a great day and a great holiday season.
Key Takeaways
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2:00 – Heather shares her story about her son, Hill.
6:25 – Many of the moms that High Risk Hope has helped are volunteering in Heather’s organization once they are better.
8:30 – Heather gets to see 2,500+ kids grow up and that’s one of the biggest rewards for her.
12:00 – Rosemary shares her niece’s story of losing a children through a high risk pregnancy.
17:00 – Heather recently read an interesting study about singing to a child in NICU and how it helps them breath faster.
19:10 – What can you do to help a bed rest/NICU mom? Heather breaks it down in this segment.
27:00 – Heather shares how she got her organization started.
30:00 – Despite having great prenatal care and doing everything correctly, Heather still ended up with a high risk pregnancy.
34:10 – As a mom, you have to let go of the guilt associated with this. Do not be afraid to ask for help.
37:00 – Heather explains what her hospital survival kit is about.
43:00 – Do not be afraid to reach out to Heather, ask questions, and help other moms or friends within your state and give back to your community.
Mentioned in This Episode
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http://www.highriskhope.org
https://www.facebook.com/highriskhope
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