NICU and Preemie Mom Support with Jodi Klaristenfeld: Podcast Episode #161

We chat with Jodi Klaristenfeld, founder of FLRRiSH, about navigating the NICU and supporting moms of preemies.  You can listen to this complete podcast episode on iTunes, SoundCloud, or wherever you find your podcasts.

Welcome.  You’re listening to Ask the Doulas, a podcast where we talk to experts from all over the country about topics related to pregnancy, birth, postpartum, and early parenting.  Let’s chat!

Kristin:  Hello, hello.  This is Kristin with Ask the Doulas, and I am here today to chat with Jodi Klaristenfeld.  Jodi is a preemie mom who understands what it means to be a NICU parent.  She created FLRRiSH as a result of her own personal experiences and stresses as a preemie mom.  Welcome, Jodi!

Jodi:  Thank you, Kristin!  It’s so nice to be here on your podcast and spread the word about preemie awareness for families and just overall parental wellness and mental health wellness.

Kristin:  Thank you for sharing your story.  I would love to start from the beginning with your pregnancy journey and also chat a bit about your postpartum experience as a preemie mom.

Jodi:  Sure.  I had a relatively easy pregnancy for the first 28 weeks, and the next four days were quite difficult.  I was so sick, actually, that when I was in the hospital with my mom, my OB said to my mom, if I have to choose, who do I choose?  That’s how dire of a situation and how quickly my easy pregnancy turned, you know, not so easy.  I had what’s called HELLP syndrome where your body organs start to shut down and you reject, actually, the pregnancy, and it’s best described as the, I’ll say, severe and often deadly form of preeclampsia.  My blood pressure was 190/160.  My platelets were extremely low.  They were giving me platelets, actually, as they were delivering my daughter, and at the same time, they weren’t sure whether they would be able to do a simple C-section or whether I would need a hysterectomy or anything like that.  Thankfully, I did not need a hysterectomy, and thankfully, we’re here today and my daughter’s doing great and I’m doing great.  It just took a while.  I didn’t get to meet my daughter for three days because I was hallucinating from the medicine to help with the blood pressure situation and all the other ailments related to HELLP syndrome.  But at the same time, I was also in no mental condition, either, to see her, as well.  On top of that, my husband happened to have been in Europe because, you know, she was born 12 weeks early.  This was his last business trip he was going to take.  Fortunately, my mom was in town because we were going to do some layette stuff.  You know, pick out some cute outfits and things like that.  But little did we both know that I would be checking into the hospital for an 11-day stay instead, and my daughter for a 77-day stay.

Kristin:  So what was it like to meet your daughter for the first time after you’re getting off the meds and you’ve gone through the stress of labor and early labor?  What was that moment like?

Jodi:  Well, I didn’t have a labor.  I was an emergency C-section.  They completely knocked me out.  That’s how dire of a situation it was.  And insofar as I was still in the labor and delivery room right next to the OR room for three days until I moved to the room closest to the NICU on the opposite side of the floor.  I was that case that the entire floor knew who I was, and I couldn’t quite figure out why.  But when I went to go visit my daughter, I don’t remember much, and that really upsets me to no end, I think because myself, I was still so sick and fragile, and I didn’t know what I was going to see, either.  But I remember that I wanted to take a wheelchair into the NICU, and my husband was like, no.  You can walk.  You can do this.  He goes, I will push the wheelchair behind you or I’ll get a nurse to push the wheelchair, but you are not – because he’s like, I know you can walk the steps now.  And it was probably maybe 10 or 15 steps, so we’re not talking a great distance, but after having had a C-section, first of all, you know.

Kristin:  Major surgery, yes.

Jodi:  Yes, and also just the overall, you know, trauma to my body.  I was just really scared.  But, you know, and I remember seeing her name on her isolette and just crying and my husband saying to me when I got over to the side of the basinet where I could see her better – he goes, “Well, does she look like a Jenna?”  And I’m like, of course she looks like a Jenna!  I just can’t remember much after that.  I think I was just overcome with emotion and so happy to see her and meet her, yet so scared and terrified at the same time.

Kristin:  So how long was she in the NICU, and how many days did you stay in the hospital before going home and navigating the back and forth?

Jodi:  I was in the hospital 11 days, and she was in the NICU 77 days.  It was the weirdest feeling to me to leave the hospital without my daughter.  I couldn’t understand it.  I knew she was in the place where she needed to be to get the care in order to help her survive and grow, but at the same time, I think when most women, myself included, unless you have a history or someone in your family, maybe, that’s gone through something similar, you don’t think that when you’re going to go have a baby that you’re not going to leave the hospital with your child.  You think, oh, I’ll be in the hospital two, three days, you know, assuming everything’s fine, come home with the baby.  And that was not the case by any stretch of the imagination.  So it was a very confusing, you know, time.  I wanted to stay in the hospital, but I wanted to get some fresh air.  I didn’t want to leave my daughter.  And I was also told still because my blood pressure was high that – and this was January.  She was due in April, and she was born in January.  And we live in New York, so I was told if the weather – the temperature got below a certain – like, freezing, I wasn’t allowed outside and I couldn’t go and visit her because it’s a lot more strain on your heart and your body to do work when it’s so cold out.  And they didn’t want me to elevate my blood pressure any more than it already was.

Kristin:  Makes perfect sense, yes.

Jodi:  Yes.  But there were some days like that, and in that first week I was home, there was, I think, two days like that.  And I remember feeling like I was the worst mother.  I already felt like I was the worst mother, you know, that somehow I did this to her.  I caused this.  And then I was thinking to myself, well, all the NICU doctors and nurses are going to think even worse of me because I’m not visiting my child and doing kangaroo care and holding her for hours.  I’m just leaving her there.  But as I got stronger, too, those – you know, that was lifted in terms of the temperature because I got stronger and I got better.  But at first, you know, I had to listen to what all the doctors said.

Kristin:  Of course.  So you’re trying to focus on your own recovery and then, you know, worried about Jenna and her recovery.

Jodi:  Yes.  And just – you know, it’s a feeling, and I say this to people kind of like when you’re trying to get pregnant.  It’s kind of like you have no control.  You can do things to put yourself in the best position to help yourself and help – you know, help your child at this point, but basically, right, there is no reading of a manual.  There’s no spreadsheeting.  There’s no nothing, really, that can help with the process.  Jenna just needed time like all NICU babies.  They just need time to eat, sleep, and grow.  And it sounds so trite to say it that way, but it’s the truth.  You know, they told us to figure she would come home around her due date, and I remember saying to my husband, like, but she’s not due for such a long time.  I don’t understand.  And sure enough, she came home three days before her due date.  I mean, they were right about everything.  And I will say this: special shoutout to all the doctors and nurses in the NICUs, and also my OB.  They’re lifesavers and angels and heroes.  They are people of a personality that is like no other.  The patience to deal with parents in such a stressful situation and to be able to calm the parents down and take care of the children at the same time and provide, you know, some comfort and instruction is amazing.  It’s a special person.

Kristin:  I completely agree.  My daughter was only in the NICU for four days, but they are very special, and I felt so comforted when I left the hospital with my daughter still in the NICU.  But I couldn’t imagine, you know, having a much more extended time period to again go back and forth and communicate.  So what obstacles did Jenna face as she is growing?

Jodi:  When she was first born, and this is what I tell people all the time: do not Google, for this very reason.  There were a host of things.  She had a premature retina of the eye.  She had a hemangioma on top of her head.  She had really bad gas, like reflux, to the point where some days her belly looked like the biggest part of her body.  And she had ASD, also known as atrial septal defect, so that is a hole in the middle chamber of your heart so the blood flows both ways between the left side and the right side.  So of course I took it upon myself to Google what exactly that was, and I went down a rabbit hole.  It was not good, and I told my husband after that I would not Google, and to this day, I still haven’t.  But thankfully by the time she was 18 months old, the hole had closed up, so they did not have to do surgery.  And it was during COVID when – the height of COVID when we had this appointment, and I remember saying to the doctor, like, I really want to hug you right now.  I know I can’t, but I was just – it was like raining down my face because I was just so, so happy to – yeah, and we had to see specialists for her acid reflux.  She had to have an upper GI while she was in the NICU just to rule out, you know, that there wasn’t any type of blockage or something, and it turns out that she needed this special formula to supplement my breastmilk, so with many of the NICU babies, on top of the moms pumping, because you can’t nurse, they add formula to it to help them gain weight and get necessary nutrients.  And it took four different ones to finally find one that worked and her gas, like, went away.

Kristin:  Amazing.

Hey, Alyssa here.  I’m just popping in to tell you about our course called Becoming.  Becoming A Mother is your guide to a confident pregnancy and birth all in a convenient six-week online program, from birth plans to sleep training and everything in between.  You’ll gain the confidence and skills you need for a smooth transition to motherhood.  You’ll get live coaching calls with Kristin and myself, a bunch of expert videos, including chiropractic care, pelvic floor physical therapy, mental health experts, breastfeeding, and much more.  You’ll also get a private Facebook community with other mothers going through this at the same time as you to offer support and encouragement when you need it most.  And then of course you’ll also have direct email access to me and Kristin, in addition to the live coaching calls.  If you’d like to learn more about the course, you can email us at info@goldcoastdoulas.com, or check it out at www.thebecomingcourse.com.  We’d love to see you there.

Kristin:  This was all new to you, obviously, like the terms, and you said that you hadn’t had relatives or friends really navigate this, so it’s a whole new experience.

Jodi:  Yes.  I mean, daily it was a whole new experience.  I was very fortunate in that I was able to be at the NICU every day or at least every day, like I said, except for those beginning days.  And I made sure I was there for rounds in the morning so that I could understand or try and understand what was going on, what they were looking for or not looking for, and ask a million questions of all the doctors because at that point, aside from, like, the specialists, like the pediatric cardiologist or the pediatric ophthalmologist, all the other specialists did the rounds at each of the isolettes, so you can ask a million questions, you know, if you wanted to.  And so I took it upon myself to learn as much as I could because, you know, to your point, there is so many terms, and they use a lot of acronyms, understandably so.  That’s their vernacular, that I couldn’t begin to understand.  And I would write them down in a journal because when they would do the rounds, they would hold the baby.  I wasn’t holding the baby.  So I could write things down, and then I’d ask afterwards, oh, what does this mean?  What does that mean?

Kristin:  And I know you’ve got a download of those terms, which is so helpful, from your website.

Jodi:  Yes.  You know, I tried to make everything actually in laymen’s terms.  I think that’s so important.  Yes, you can ask all the questions you want, but you still also then have to remember that or write it down or something.  So for me, I thought it was helpful to help other parents by providing all of the terms but in regular, general vernacular, not so technical that it would be difficult to understand.  And, you know, I just felt so strongly that I knew I wasn’t the only other mother out there in the world experiencing what I was experiencing and that I knew I somehow had to turn this experience into lemonade, as they like to say.

Kristin:  It’s beautiful.  So tell us a bit more about the programs you run at FLRRiSH and how moms – say they’re on bedrest and they’re anticipating, or they’re expecting twins, triplets, and want to get ahead of the challenges the NICU may bring versus someone who may not, you know, have that awareness that the NICU is part of their journey.

Jodi:  Right.  I think the thing is, even if you are on bedrest and you have that awareness, it’s still overwhelming in and of itself.  You know, I think it’s important to note that, again, even if you have twins or triplets, chances are they won’t be full term and they will have somewhat of a stay in the NICU.  And it’s okay to feel overwhelmed.  It’s okay to feel upset and sad and frustrated.  I always tell people that’s the most important thing.  Allow yourself to feel before trying to learn anything.

Kristin:  Yeah, you almost have to grieve what you envisioned your birth to be like.  I know I had preeclampsia, and as I am in my room without my baby, my first child, and the photographer’s coming in and lactation and I’m getting all of these visitors and there’s not a baby with me – she’s in the NICU.  There is a bit of that grieving, you know, as you’re turning people away, like no, I don’t need photos right now.

Jodi:  Right.  Or, like, I don’t have the footprints, right, that are on a lot of parents’ birth certificates or whatever.  Obviously, that was not important for my daughter’s situation.  So, yes, you’re absolutely right.  You have to mourn that.  And it does take some time.  I want to be clear, and I just want everyone to know that, that it does take time.  It’s not like, oh, okay, this isn’t going to happen for me, and then I’m going to be fine.  You know, you really just have to allow yourself – because once you allow yourself and you can process, then you can move forward.  As with anything in life, right?  Once you deal with something, you’re like, okay, this is what has to be.  You can move forward.  So in FLRRiSH, I wanted to create that for other parents out there.  I know I say moms most of the time, but it’s for moms and dads.  It’s just that dads don’t ask for help, really, the way moms do.  And I also think the particular part about mom guilt or feeling like your body somehow betrayed you and that in turn you betrayed your child is only owned by the mother and that dads cannot relate to that.  But yes, so FLRRiSH offers – first and foremost, there are audio courses.  So there are little stories – right now, they’re only stories of mine.  I’d love to get stories from other women such as yourself, and they’re three to five minute stories, short vignettes, that I envision someone doing kangaroo care, listening to their ear pods while holding their baby on their chest.  Just about, you know, little experiences that I had; good things; some not so great things, how I overcame them, or what certain things mean or how to best help yourself and also become aware of the other parents around you.  Because I say this – one of my closest friends now is one of the moms that I met in the NICU, right, because you’re going through something similar that most people don’t go through, right?  So at least you can have each other, and therein was the crux of FLRRiSH because she and I could talk to each other, but I didn’t know really anyone else outside of that or even who had been through it, right?  So I created these stories in hopes that parents will listen and feel they’re not alone.  They’re not unsupported.  The doctors and the nurses, rightfully so, take care of the baby, but the parents are also left to process their own trauma.  Plenty of parents have PTSD afterwards or, you know, go through their own traumatizing experiences.  They might have to go through EMDR therapy depending upon the situation.  And I felt that if I could just provide some calmness and a voice of reason from a parent perspective, not from a clinical perspective, not any medical advice, but just to be like, hey, I’ve been in the trenches.  I’ve been in the thick of it just like you have.  And you will get through this, and you’re stronger than you know, and your baby is stronger than you know.  So that was important to me to help parents that way while they were actually physically in the NICU.  And on top of that, there are also resources that I have broken down state by state, county by county, where people can find out about early intervention or early start, any of those government programs, because as you know, it’s pivotal to get your child evaluated right away for those services.

Kristin:  Absolutely.

Jodi:  And how to go about doing that in your state and where to go, who’s a provider.  You know, where I live, I was given a whole bunch of information, and I share this story in the course, and the woman said to me, well, I have 30 days to file all of your paperwork, and I’m like, well, just because you have 30 days doesn’t mean you’re going to take 30 days?  She’s like, oh, yes, I can, and I said, no, no, you won’t.  You haven’t me.  Like, this is my child’s growth and development.  It’s my child’s life.  I’m not waiting any longer than I have to.  You know?

Kristin:  Good for you.

Jodi:  So just empowering parents as well and teaching them that they are their child’s advocate.  Their kid obviously doesn’t have a voice just yet, so they have to do the talking for them.  And there’s nothing wrong with being pushy and bossy.  This is your child’s future and well-being, and you just want to set them up for success.  So there’s that piece, and then there’s also one-on-one coaching, I guess, with me, if you want to call it coaching.  I currently talk to about six moms, and I have to say, I find it so rewarding just to hear them say, “Jodi, thank you.  You make me enjoy being a mother.  You understand this situation, and I’m not going crazy.”  To hear that is so rewarding because I know for myself, I wish I heard that.  And so that makes me believe that I’ve created what I wanted to create, right?  That place where parents can go to feel like they’re supported, educated, empowered, and most of all, feel like they’re not alone.

Kristin:  Beautiful.  Yeah, it’s so needed in this world.  I wasn’t aware of resources or courses and programs similar to yours.  So I was thrilled to connect.

Jodi:  You know, I just want to say, with respect to doulas caring for the moms, you know, there’s so much help and so much compassion that doulas have.  It’s another compassionate person who can help moms out through this process, you know, in a different way.  Helping them with their mild production, and even just telling them, you know what?  Kangaroo care is great.  It helps stimulate milk production.

Kristin:  Yes, skin to skin.

Jodi:  I actually loved it.  It was so funny.  My husband and I both tried to do it once we were home from the NICU because we both in a way loved it.  It was kind of special and magical in its own way because I feel like I got to bond with my daughter in a way that I never would have, and I got to experience so many things, you know, that I wouldn’t have otherwise.  And, you know, we tried to both do it at home, and we’re like, yeah, no, not the same.  But, you know, I think also, too, I will say this: my husband was instrumental, and this is where a doula or more of a lactation specialist, too, could have helped, but especially a doula if I had one.  I didn’t even want to start pumping.  I was just so sick, and I was like, no, I can do it.  I can do it.  And my daughter had donor milk at first.  She was not allowed to have my milk because of the magnesium.  So we had to wait anyway.  But I ended up – but my husband found not – there wasn’t – like, the lactation specialist and I didn’t, I’ll say, click in the hospital.  But he found one of the nurses who had recently given birth, and he’s like, you have to talk to my wife.  You have to talk to my wife.  And this is where a doula would totally come in, right?  And I ended up producing so much milk that even after I stopped pumping when Jenna was ten months old, she still had three months’ worth of milk.

Kristin:  That’s amazing.

Jodi:  They say not to keep it more than two months, and I knew I had too much, so I donated my milk.

Kristin:  Full circle.

Jodi:  Not every place would take it because I was on blood pressure medicine for a while, and I guess they didn’t want to necessarily, I guess, give that to other babies, but I found a place that would take it because I felt like I can’t throw this out.  This is like – what do they call it, liquid gold, right?

Kristin:  Exactly.  Yeah, other babies need it.  So I love that you donated, but yeah, some milk banks do have very strict rules, of course.  I’m glad you found a place to donate, and I’m sure the family was so overjoyed, as you were when you received donor milk.

Jodi:  Yeah.  Again, it’s one of those things you don’t think about.  Like, I thought of, okay, blood transfusions, right, but you don’t think about milk coming from somewhere else.  Or at least I didn’t.  And so yes, I was happy to be able to, and like I said, the woman – the nurse helped me so much.  And one thing I did learn, which I thought – I’m kind of small chested, so I thought, oh, no way am I ever going to make a lot of milk.  I made more milk than I – like, I was like a milk machine.  It was kind of funny.  My husband was like, where is all this coming from?  But yes, and I think in that case, especially for me, it would have been so helpful for someone to say to me, you know, just do this.  It’s going to be okay.  Your baby will have – there’s so much going on.  It’s just an added layer of support for women that is much needed.

Kristin:  Exactly.  So how do our listeners and doula clients connect with FLRRiSH?  I know you’re on several social media channels as well as your website.

Jodi:  Yes.  So our full-on website with all the audio and all the resources will be ready by the next month.  We had a few delays.  But until then, they can find me on Instagram @flrrish.  And our website is the same.  They can email me at hello@flrrish.com.  Or through LinkedIn.  I’m always happy to talk to anybody.  You know, any way I can help someone.  You understand.  You’re in the same place, right?

Kristin:  Of course, yes.

Jodi:  You just want to make someone’s journey better than your own.

Kristin:  Exactly.  Sharing wisdom and being a listening ear.  I love that you brought this program into the world.  Thank you very much for sharing your story and your journey.  If you have any final tips for our listeners, Jodi, I would love to hear any last NICU navigation tips.

Jodi:  Yes.  I would just say, please don’t be hard on yourself.  You know, I think as moms, first of all, we think that we have to have all the answers right away, and that is not true.  And don’t be hard on yourself, especially if you don’t bond with your baby right away.  It takes time, and especially if you have given birth early, you have to process for yourself what happened to you before you can be there for your child, and there’s nothing wrong with that.  You know, even in full term babies, there’s a large percentage, something like 18-22% of people that don’t feel instantly bonded to their child.  So know that that is okay.  And to just allow yourself to feel.  You know, there’s a whole host of emotions, and even when someone says something to you that might not be appropriate who’s a good friend, you know, they’re just trying their best to be there for you, and people just say things that, you know, when they can’t think of something else, sometimes something not appropriate comes out.  And just know in your heart that your friends really love you and they just really want to be there for you.  And also, I would say lastly, you’re not alone.  10% of moms go through this every single year.  There’s a whole bunch of us out there, and that’s why FLRRiSH, that’s why Gold Coast Doulas, that’s why there’s so many organizations out there to help you.  You are not alone.

Kristin:  Love it.  Thank you so much, Jodi!  Really appreciate the time today.

Jodi:  Thank you!  I had a great time.

Thanks for listening to Gold Coast Doulas.  Follow us on Instagram, Facebook, and YouTube.  If you like this podcast, please subscribe and give us a five-star review.  Thank you!  Remember, these moments are golden.