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Nicole: Today we are joined with Colleen Dr. Colleen that will be talking with us today on the Power of MoMMAs Voices podcast about her pregnancy and advocacy journey. And we're really here in the second season bringing a platform for people with lived experience to share their their stories with folks.
Nicole: We wanna make sure that we're elevating and amplifying stories and that healthcare teams and quality improvement teams and those decision makers have a way to listen and to learn and to be able to put a voice and a humanity and that heart behind the stats and the numbers that they see. So thank you for joining us Colleen.
Nicole: We're glad you're here.
Colleen: Thank you for having me.
Nicole: So to start off with what are the things that you want the listeners to take away from today's podcast with you?
Colleen: One main [00:01:00] takeaway would be start building a community if you don't already have one. Being able to create a community whose sole purpose is to support advocate and really be there for and with you as you go along on your motherhood journey. I think that is that is the biggest piece. This is how you're not only going to survive but really thrive.
Nicole: And where did you find your community? You know I think I'm a little spoiled where I am the person who has had you know good friends since we were 11.
Colleen: So I have a close knit of friends and we have journeyed through life. Together, at different stages. I have good college friends as well and a few good friends that I met in adulthood.
Colleen: So I've always had not necessarily a large circle but maybe , key persons from each period in my life that have [00:02:00] really helped me along my way not just as a woman but also as I've gone into motherhood.
Nicole: Excellent. And so you you talked about creating a community. So are there any things aside from the lifelong friends that you've had that helped you to feel like you were in the creation mode and being able to to build that out?
Colleen: So yes. So along the way I have gathered a grief coach a dear friend who is a doula. I think my OB is the best in the world. I also have a friend who is a health coach so there are different elements. I love my dentist and of course I went twice when I was pregnant instead of once for the year. So the community isn't necessarily just friends it's also health care providers as well as community workers who are helpful as I process and just walk through pregnancy or motherhood.
Nicole: Awesome. [00:03:00] Well tell us about your advocacy journey. First we'll talk about your pregnancy journey in a little bit but your advocacy journey what does that look like? What has stood out most to you over that time? I consider myself an atypical maternal advocate. I did not start out my journey saying you know I want to tell my story or I want to help other mothers.
Colleen: By speaking I first came across. MoMMAs Voices when I was doing the training for the Promise Walk for preeclampsia. So a little backend. I work as a physical therapist in a hospital and I actually treat birthing persons who are admitted before birth or immediately after birth and we provide them any care they may may need if they're in for pregnancy related complications or any delivery complications especially after a c-section.
Colleen: In that line of work we would see [00:04:00] mothers who were having a lot of either preeclampsia during pregnancy or postpartum. So I started looking about you know what is out there as it relates to awareness of preeclampsia. And the Preeclampsia Foundation of course came up first and foremost then signed up to be a cheer for the Promise Walk and voila pops up MoMMAs Voices and I thought this is fabulous.
Colleen: Where has this been all my life? Or all my motherhood life so I jump on board with that and I was able to complete my training a week before the I'm in Nebraska. And each state has a perinatal quality improvement collaborative. So I finished my training one week before they were holding their annual conference and Bekah Bischoff was coming to town.
Colleen: I think she was the then program manager. So I get to meet Bekah and also there was Tamika Isaacs and Lucy Hamilton and they're veteran patient family partners. And it was just a surreal experience too. Hear them [00:05:00] all share their story and it really solidified for me okay this is where I need to be and this is how I also need to use my voice.
Colleen: So since then been able to host a walk the first ever in the state of Nebraska have been able to work with NPQIC the Nebraska Perinatal Quality Improvement Collaborative NPQIC is much easier. Been able to work with them on several webinars and even collaborated with a group over in Ghana that focuses on preeclampsia as well.
Colleen: So lots of opportunities have opened up for me to share my story and be able to see how that can help other mothers.
Nicole: You had a unique opportunity. 'cause not everybody gets to see like firsthand PFPs being put into action like that quickly. So it sounds like it was something like really transformational to seeing like what the opportunity is and and how that how it can make such a broader impact.
Colleen: [00:06:00] Correct. Correct. That's I wish I could bring more people along to me to those kind of things to see especially if they're new to be able to see that.
Nicole: So you know you've had preeclampsia and and that piece of it. So advocacy journeys and pre and pregnancy journeys don't always align. So what are some things that you're willing to share up to you that might have been warning signs through your pregnancy that something was going wrong?
Colleen: So I've had preeclampsia more than once. I'm just special like that. However the first time around I was my first pregnancy and I ended up having preeclampsia postpartum. Didn't know it was a thing at the time but in the first and second trimester of that pregnancy with our daughter Moriah there were a lot of warning signs.
Colleen: Because I had severe hyperemesis gravita. I was all day sick all day. All night. I would [00:07:00] get up and be nauseous and I would walk down the stairs and be nauseous. I would be in the car driving and be nauseous and obviously I was losing weight and I didn't start out with much weight to lose to begin with.
Colleen: And I was having a lot of abdominal cramping on top of that. We didn't know at the time. But I also had endometriosis. So I just had all these problematic menstrual cycles. So I came into a pregnancy with a history of menstrual issues with multiple uterine fibroids and different portions of my uterus and varying sizes.
Colleen: And I was having this pain and having this not just first trimester but into second trimester all day hyperemesis. So those were the biggest warning signs um that were there that were screaming. Red flag red flags.
Nicole: And did your hyperemesis did it subside or was it from day one to the end? You were sick every day.
Colleen: So it [00:08:00] only subsided after delivery. Okay. And that was true of all of my other pregnancies.
Nicole: So you had it multiple times too. It's you know I'm like it's morning noon night sickness. It is not just morning sickness. It's like you said like going down the stairs breathing air like you know it's just being alive.
Nicole: Like oh we're gonna be nauseous. Yeah nothing nothing. Well there's some things other out there that can help but oftentimes so much trial and error to find out what actually is gonna help you out. And in the meantime you're just suffering through it and and trying to. Continue to be a productive part of society and an adult and all those other things that sometimes even being a mom and and you know not being able to just lay down and crawl the ball like you might want to.
Colleen: Oh yes.
Colleen: All of those things.
Nicole: Such a awful awful gift that keeps on giving. I would say not it's not really but oh my gosh. Definitely one of those. What's the return policy? And and that adds to like one [00:09:00] of the next things is talking about like your emotional mental health. Like were you listened to when you were trying to get help for your hyperemesis.
Nicole: A lot of people aren't heard when they're trying to get help for that and and what that can add to like your emotional and your mental health and the impact that has.
Colleen: So you know in another pregnancy I was managed by a different ob. The OB that I now am in love with and this my husband knows. But in that pregnancy I was managed so well and found out that there are several options and there's a whole algorithm of things that can be done to assist to maybe mitigate or kind of decrease some of that.
Colleen: So it makes you more functional. And my first pregnancy I did not receive that. I was definitely not listened to. And one incidence I [00:10:00] ask them about Dramamine because Dramamine is for motion sickness. So if you've ever been on a cruise or just have car sickness Dramamine is something you can use. So I started taking that because it's over the counter.
Colleen: So I went into one of my visits and asked you know can I continue to take this? And it's based we lived in a mil on a military base at the time and they would give you a script for things. So I thought I'm gonna go in I'm gonna tell them this works. Can I get a script for it and I'll pick it up? Well
Colleen: they say okay and someone comes out with a script you know big names on there 'cause it's medical name. And I go down to the pharmacy and the pharmacist actually comes out to me and she goes what is it that you need this for? Or do you know what they've ordered for you? So I said yes very confidently.
Colleen: You know Dramamine. And she says this is for Benadryl. She's like what? What? What are your symptoms? And I said no I'm nauseous and I have hyperemesis. And she goes this will make you sleepy but this is [00:11:00] not something to help you with your symptoms. So that's just kind of one incidence of where I'm like okay they're not listening.
Colleen: This is a a a problem for me. So with that though to your question I think emotionally that pregnancy was very draining. I do feel as though my body failed me as I was trying to journey through this. Like women do this all the time. There are people with five children and how am I not able to function?
Colleen: As you know our bodies are created to do this. What is wrong with me and mine? So I did feel very defeated in that first pregnancy and that led to a little bit of anxiety and not. How I would describe my anxiety. I'm not necessarily anxious fleeting around a room. I am doing so many things being busy and I'm just shoving that but deep inside my mind is fleeting.[00:12:00]
Colleen: I'm trying to do things that look like I am calm and moving in slow motion but in my mind this anxiety is overwhelming. You know what's gonna happen next time? How am I gonna cope? What if I throw up this time and pop another blood vessel in my eye or start throwing up blood? So I had all these 51 scenarios.
Colleen: So emotionally I walked in a lot of anxiety after that pregnancy and with subsequent pregnancies and really had this I guess a bit of fear as well. Like what if what's gonna be the outcome? So it it really did take a toll on me emotionally.
Nicole: Well high functioning anxiety you know just it it takes a toll and and it's and it's so isolating too where you know being able to feel like you can speak up or can't speak up or just the constant.
Nicole: Thoughts running through your head about all the different like you said scenarios at least adds to it. And and [00:13:00] I feel for you because I'm like oh if we'd have been around like it's so hard to hear someone say like I feel like I was a failure and my body failed. And I understand that that feels like have those same thoughts but being able to connect with someone that says like.
Nicole: You are not a failure. And I know it's so hard to think that like women are ready to do this. Like it just comes natural but it's not always easy. And I think the more we talk about it the more we realize that we're not alone. We're not alone. And for so long we're mom's generation or grandmother's generation they just didn't talk about it.
Nicole: They did not. And so or you know one time I said somebody told me like you know I had a pregnancy loss too and they just admitted me to the hospital for like a week sedated me. And I came out and I was fine. I was like good for you. That is not what happened to [00:14:00] me. You know so it's that's what they did.
Nicole: They just went to the hospital for a few days and they came out and and and so how does that change how we are now? Like I think we're able to connect with people.
Nicole: In a much different way like where we can share that burden we can help other people to recognize that like you aren't alone and that they don't feel so ashamed and so isolated is at least my hope.
Colleen: Yes. Yes. Really knowing that you are not alone in this because in my case I got married within a few months of a couple other friends and they were all having what we call our honeymoon babies. So here it is. Everybody is married everybody is getting their baby and I don't and who do I turn to for comfort in that?
Colleen: Who can walk with me in this? So it's definitely very isolating and it's not like at the doctor's office they'll say okay here's a group that you can connect with. Maybe I [00:15:00] wouldn't have I don't know but needing options to know where to turn and how to manage this and everybody will say something different.
Colleen: Like you had someone tell you I was in the hospital and I'm fine. Please define what I'm fine means.
Nicole: Mm. Mm-hmm.
Colleen: You know I mean it's years later now and I still have a moment occasionally. Right. So you know I I beg to differ in regards to the I'm fine.
Nicole: But know the I'm fine. That's like the teacher or woman saying I'm fine there's anything but fine.
Nicole: Or like they just don't want to talk about it. It could be a whole lot of things but I think being able to find people that really have been in in your shoes and understand that. So you know we you do when you're young and everybody's getting married in your friend group and they're around you and it's becomes this like it's so easy to compare where you're at.
Nicole: Do you have the house? Do you have the job? Do you have the degrees? And [00:16:00] and knowing like we're all different and even in parenthood is like judging like one kid versus the other. You know it's so hard and to really look at the healthcare systems now and think of how we can like recognize the patients are human beings the healthcare team are human beings and and help each other out in that way instead of it being like a competition.
Nicole: Like how are we working together? To make things better for the next person. How can we support those people that are going through it right now and learn from history let's learn from the past and make some changes.
Colleen: Definitely bringing back that compassion.
Nicole: Mm-hmm.
Colleen: Back into. Into caring especially as providers bring that compassion back.
Colleen: I remember once I was sharing my story as a patient advocate and it was a room full of providers and I was saying that I knew the route with preeclampsia and I knew that. I I came in with my [00:17:00] husband and our newborn at the time and I knew my blood pressures were already high. I knew I was likely gonna be admitted.
Colleen: I do know that once you are on magnesium sulfate which is the medication they give you by IV to get that get those blood pressures down prevent you from having a seizure. I know that you cannot have your infant with you. However I was determined that wasn't the case. So the nurse stepped out of the room.
Colleen: My husband says he'll be back for a meeting and I say okay. I didn't want to be separated from her. That was my selfish reason.
Colleen: Okay. I had selfish reasons for that but I knew what it was to go home without a child right? Or from a loss. So I'm like Nope nobody's taking the baby. And I also knew that it was the hospital where I worked.
Colleen: So if I had to call my boss the one housekeeper I knew the lady in the cafeteria who I knew a coworker somebody was gonna be by the bedside. And it took the nurse a little bit to figure out what I had done. At which time she's like you can't have the baby. So I was sharing that [00:18:00] at this event and one of the providers is now asking a question and she goes when you lied and tricked the nurse and I'm like.
Colleen: Let's rewind. I did not lie and I was not tricking anyone. Yes it may have been considered deceptive but I just didn't wanna be separated from my child and we really have to pause. And what seems logical to you people have emotional reasons. If you tell them they can't bring their other child or you're gonna have to find care for them or you're gonna have to be separated from.
Colleen: Your newborn somebody may opt not to come in and maybe because they don't understand the gravity of the situation. So really bringing that compassion back into play as providers I think is very crucial. Right? Asking those deeper questions than just oh here goes another mother who didn't listen to my instruction.
Nicole: Non-compliant.
Colleen: Non yes. Non-compliant. That word. Hmm.
Nicole: Oh my gosh. I hmm. That's a [00:19:00] tough one. And you're very you're right. Like understanding. Did they know was it the the healthcare team that understood the person that made that comment like and the nurse did they understand what she had already gone through so often?
Nicole: When you're asked for new patient paperwork and fill out all the history and it's so often it feels like did you why did I write this whole yeah we're gonna talk through it again and then like how many times are you gonna open your mouth and stick your foot in it? Because like we can do better.
Nicole: What how can we do better? Where if I'm gonna fill out all this information and answer all these questions that you can come in the room. Take a few minutes and come in the room with a compassionate understanding and what a difference that will make to the patient a huge difference huge difference.
Nicole: And if you can build that trust that way how much they more they're gonna communicate with you and share with you when they're having symptoms. They're not going [00:20:00] to be like oh no I don't wanna bother them with that either. We want that communication and that trust and that starts off with words matter.
Nicole: Understanding matters compassion matters and and getting to that like root and understanding you know we have everybody has a different experience. We all come into these delivery rooms the the clinic room the exam room with our past and our preferences that they shape those things. And when you've gone through a loss like your foundation and your life has changed yes.
Nicole: And to have that kind of like you need to understand there's a background history behind this of why that's happening. And so yes bringing back the compassion and the humanity and understanding is so important and it can make long lasting impacts to patients. That's true. What kind of support
Nicole: or not [00:21:00] support that lack of support did you experience from your care team from your friends and your family?
Colleen: So in my most recent pregnancy or our final pregnancy the shop is now closed. I received excellent care and when I really compare it to my first pregnancy it's like wow. So it is possible to have a provider that listens to you and down to the front desk staff.
Colleen: They I was a regular because now I was much older and of course considered very high risk and playing playing with fate even. So I had multiple appointments. I went from you know once a month to twice a month to once a week to twice a week just throughout this whole pregnancy. So I felt like I knew the office staff very well and the front desk staff and just everyone with the team the [00:22:00] the ultrasound tech the MA just treated me as Colleen and that was so validating.
Colleen: Just how are you? How is the family? How are you feeling? We know you are just finished work and you're run rushing in. We'll check your blood pressure when the session is over. Just those things or if I call and I said you know I'm gonna be like five six minutes late. It's okay. We'll let Dr. Jimmy know.
Colleen: So just that level of understanding and humanness and seeing me was. All the support. I I actually said to my husband I said you know regardless of the outcome of this pregnancy good or not I know I was treated well. I know I've been treated well. Point blank. We could have gone left. I mean we had some complications at the end of the day.
Colleen: I knew that I was listened to. That I was treated well as [00:23:00] Colleen so it is possible and I think it was almost just very redemptive considering how my first pregnancy went and I had tremendous support from the care team. My family and friends have you know always been my biggest cheerleader. My children are still spoiled to this day because everyone thinks they're miracle babies and which they are but
Colleen: I know my family and friends are always rooting for me but it was just so refreshing. So as I said redemptive to have that level of support from a care team that I think I've ever experienced.
Nicole: Was there anything that they did like specifically that you could share for the person that's listening to this and they're trying to figure out like well what does that look like?
Nicole: How can we do that? Is there anything that they did specifically that comes to mind?
Colleen: So
Colleen: one so when I first met with this doctor he also didn't know me because once again we had moved to a new state. [00:24:00] You know I had my paper things in hand and we actually had the appointment because I was gonna talk about taking care of the fibroids and possibly then doing like a hysterectomy.
Colleen: And then we found out I was pregnant. So he laughingly says we will address the fibroids after we go through this and you know thank you for acknowledging that. And you know kind of joking around you know we have this life. And I said to him you know one of the biggest things was this hyperemesis. And I also had what's called I now know like ptyalism is what it is in the south.
Colleen: They would say if you're spitting you're pregnant. It's really a hypersalivation. Like I would drool like a mastiff. So I would have two water bottles one that was actually water or coconut water. And the other one I would act like I was drinking. And sorry to gross anybody out but I was actually spitting.
Colleen: I would drool if I didn't. It was horrible. And I was saying so I had this spitting thing. I was very embarrassed to share this with him. Apparently it's a thing in the [00:25:00] south don't ask anyway. And my mother didn't have it and she was like I didn't have that. Can't help you. But I'm speaking with Dr.
Colleen: Jimmy and I'm shyly sharing this information and how this was embarrassing and I had all this hyperemesis the last time and he says Colleen that is referred to as ptyalism and it's a form of hyperemesis gda and there are several ways in which this can be managed. And he listed out various things and he's like we will walk you through that if as if that continues to be problematic.
Nicole: Mm-hmm.
Colleen: I'm like thank you. That to me was one. He sat and heard me explain my embarrassment with this side effect of pregnancy. Two he acknowledged that it is a thing knew what the name of it was and said this is how we can help you and we will walk you. Walk with you through it. So that right there I was sold [00:26:00] and in love um from that point on and could feel like he would do no wrong.
Colleen: Going forward my OB is very calm and he is very knowledgeable and I think that also helped. So nothing I presented with was really a problem to him. So we would talk about the location of the placenta to the fibroids. We would talk about how fibroids affect pregnancy in terms of fighting for blood supply and nutrition or them outgrowing their blood supply and degenerating.
Colleen: So it was this whole education piece that was given to me that I was able to walk away with from an appointment and go home and sit on and if I had any questions. They were an epic chat away a messaging away a doctor's message away. So for me that was what really drove home the genuine compassion and care that I got from the team [00:27:00] because they were explaining things they were answering my questions and it didn't matter how silly the question I could have gone in and said
Colleen: my left ear lobe itches at two o'clock in the morning and I'm sure he probably would've had some evidence-based article to tell me but it you know I had that level. I had developed that level of comfort with them knowing that there was no stupid question and that he was going to answer every question.
Colleen: So that helped because I had a lot of once again this hidden high functioning anxiety as this undercurrent you know. He was addressing these things and quelling these scenarios. So those are the things to look for.
Nicole: Those are things that build trust.
Colleen: Yes.
Nicole: I just think about that like what is it what is it that builds trust with providers that would make you I went back to the same provider that had my loss with and some people are like oh I wouldn't have done that.
Nicole: I'm like but I trusted her. [00:28:00] Why did I trust her? What was it that made me trust her and say I will go back and do this again with her. We'll go to battle together. And so just-
Colleen: she calls you Nicole probably.
Nicole: I have her cell phone number. I can text her.
Colleen: Yes. My doctor always shook my hand. That's another thing.
Colleen: Every single time he would always shake my hand every day every time I saw him. That's a big thing. 'cause not everybody not every provider will do that or will do that. Ungloved and he was not standoffish. He would sit. So we were now at eye level versus you know standing and I am sitting or on the table.
Colleen: So that's also something a very open posture. I think if he ever had his hands crossed he would be behind his back not like a crossed closed position. So those are also some nonverbal as well as tactile things that that he did.
Nicole: Excellent. That's great. I know you went through you [00:29:00] know differences.
Nicole: You moved you had pregnancy um that was managed with military doctors in care and and being able to go from like the I guess you would say like worst case scenario. Definitely the worst outcome. To being able to to come back and having that redemption that rainbow afterwards. How did you how did you deal with like I found this with my rainbow pregnancy was like it felt very surreal afterwards.
Nicole: Were you connected like from through the whole pregnancy or did you struggle with that? Like I had. Anxiety about all kinds of things. My biggest anxiety was on breastfeeding. Like we'll figure out all the stuff that was on breastfeeding. But you know it's like it was really hard and it was people like I think there's this concept that like you become a mom and [00:30:00] the light shine from the heavens and it's like magical glitter and all those perfect things but when you've gone through something I'm so wrong.
Nicole: I had such a hard time like connecting and bonding and I didn't know if you had experienced that as well? Or were there any things that helped you you maybe can recognize that that helped you to feel connected? I mean obviously you said like you wanted to keep your child in the room so like that's a part of it.
Nicole: As well you don't wanna be separated like do you think about anything like that?
Colleen: So excuse me. So I did have a pregnancy before this last one.
Nicole: Mm-hmm.
Colleen: And prior to going into that I mentioned earlier that I had a grief coach and that grief coach really helped me one reconnect with my faith because having had a loss that kind of shook my faith and or it did shake my faith but not only reconnecting to faith but really helped me to walk the part of the path [00:31:00] that says you can have joy and grief at the same time.
Colleen: Like you can be happy that you're bringing home a baby. Also be sad that you're a baby short if that makes sense. So we worked a lot in our sessions or just in our talking with navigating now actually bringing home a baby and what is ironic about our first baby girl Moriah she was born in my second trimester prematurely and of course she passed.
Colleen: She was born on July 24th in 2016. Now our son Jordan he was born July 24th 2018. So he was also premature and he decided to come on his sister's birthday in the same fashion same same labor and delivery just the same manner of every almost even to what the providers were saying. Very surreal. And of course now I have a baby in my arms that I go home with and[00:32:00]
Colleen: I did I I grieved Moriah but I was so happy so overjoyed like a human is here that I can take home. And the providers were also they gave me wonderful care. My last pregnancy is excellent five stars right? But these providers gave me great care and I thought that was great until I met Dr. Jimmy. But
Colleen: there was not a dry eye in the room because they actually read my chart and they realized that today's date was July 24th. It is July 24th. And they were like looking back and I I saw one nurse in the computer. It's like
Colleen: so your last preg- okay so yes the doctor will be in shortly. So she caught herself because she realized like okay this is the same day two years ago that she had a loss. And I promise you everyone in the room including the OB was crying. And at the time as much as I was overjoy just to you know the smell and the touch and this baby is alive [00:33:00] I still there's that still that part of me that grieved and just missed Moriah.
Colleen: So I cried for them both. And I had to just kind of walk that path together of embracing Jordan and walking through Moriah.
Colleen: And it's hard but I don't think I knew that those things could have existed together before that.
Nicole: Wow. That is very like unique. Experience of of having those I'm like I think of all of the milestones that you celebrate at the same time and grieve at the same time. You know I still have go ahead. I was like we talked so much about like these big dates and like being aware of what those trigger dates are and like the double trigger date.
Colleen: So I will tell you this and because I've lived many places in different countries. My [00:34:00] friends don't all know each other but things are just divinely orchestrated. I will still get either flowers a stuffed animal a text message a phone call acknowledging. Moriah say Heavenly birthday if you wanna use that language.
Colleen: And then Jordan will get all his birthday things. So that's kind of what I mean by people always holding you know my friends and family hold space with me not just when it happened almost 10 years ago but even to this day. So to have someone still say her name sometimes we will let go of balloon you know or one of Jordan's balloons on his birthday just kind of
Colleen: symbolic. But it has been this as I said this constant walk of being able to celebrate and also hold space for Moriah which I don't know I guess I don't know how else I would do it just 'cause I still wanna honor her and [00:35:00] she because of that experience this is who I am today. You know I as you said it changes you forever.
Colleen: There's no undoing there's no going back. You know of course I'm like how many children do you have? You know those questions come up right? So it's always gonna be a part of me. So to have them acknowledged on the same day is it's special to me. And something that I I don't know. I don't know what it would be like not having them on the same day right?
Nicole: Mm-hmm.
Colleen: So and I'm grateful that people hold. Space for me and still acknowledge that to this day.
Nicole: I am so thankful that you have that because it is not everybody's experienced that it's like oh you have a child now so you should I get over it or move on or be okay with these big life events that that child that's [00:36:00] missing isn't here to participate in- how important it is to say their name.
Colleen: Yes.
Nicole: And to recognize that they made an impact.
Colleen: Yes.
Nicole: And they have a legacy far past what was here on Earth.
Colleen: Yes.
Nicole: I wouldn't be where I'm at. We wouldn't be talking today. Neither one of us had suffered these losses.
Colleen: Absolutely.
Nicole: What's the likelihood that our our path would've crossed
Colleen: slim slim to none.
Nicole: Right. And and as much as it hurts and I wish that he was here I can also recognize that I would not be where I am and doing the work that I'm doing if the outcome had been different.
Colleen: That's true.
Colleen: Did you- did- what was your son or did you choose to name your son?
Nicole: His name was Cooper.
Colleen: Cooper. I like it.
Colleen: I'm biased to see names. Of course.
Nicole: Yes.
Colleen: And
Colleen: that's it. They forever [00:37:00] change us and the trajectory of our lives.
Nicole: Mm-hmm.
Colleen: And I don't know if it's in other cultures it is different. Maybe this is the western culture where we just do not deal with death or loss. Well we tend to put it to the side. I know there was this one thing you saw about elephants.
Colleen: When an elephant has a loss the other elephants circle around her uniting their trunks. And I'm like in the animal kingdom they offer great support. Come on humans. But I just think maybe it's a little bit of of Western culture where we just don't know how to navigate it so we dismiss it or say well oh you should be fine.
Colleen: You have a baby now or at least you don't have three that ma'am please step aside. We have to really acknowledge that and even this itself having a birth plan not go the way you want is a loss. Walking away with a C-section when you wanted something vaginal is a loss. [00:38:00] Having a limp myself having a vaginal tear having a FUPA whatever it is if this wasn't something that you were expecting then that is that is a loss.
Colleen: And being able to really understand and walk with people how to deal with that and not just deal with it as in this is a moment thing. This is a journey thing. I think that's the biggest piece for me is like I'm so grateful that the community did not just stop with that support.
Nicole: Mm-hmm.
Colleen: But that this is we're riding together ride or die whatever the thing is.
Colleen: We are in this for the duration.
Nicole: A lot A lot. And it's so so important to to be able to. Handle that and keep that going. I love the analogy or the what elephants do. We're better than we like to think we're better than [00:39:00] animals right? We like to think we're better than animals and and sometimes we aren't. Sometimes we are. For a long time I've talked about what happens like some hospitals have now bereavement coordinators and they actually have a plan when there's a loss and how that those same kind of concepts can be applied to someone that's having a severe maternal event. Like the two aren't that different. So like let's dig into that that playbook and pull those things out and use utilize 'em for other people with severe maternal event.
Nicole: What um are there any things like that that like to you maybe crossed over loss to continuing to have pregnancies that weren't ideal?
Colleen: Okay so just clarity. So what can hospitals do or what do I see as a gap either way? So I still have Moriah's purple box. And I think it's cute. They took pictures. I have a little diaper. I you know I have all these [00:40:00] things. A big support oddly enough came through the funeral home. They had not only a service not only the wave of light they had resources.
Colleen: That they were connected with in the community that they would share with us. And I wish that maybe hospitals and funeral homes as well as community organizations kind of work together to have a centralized link even if it's just one site that I go to and I pick what I need from that because now
Colleen: with my last pregnancy I had the presence of mind. When I was going through all this high functioning anxiety postpartum I was looking at postpartum support
Colleen: international. I I knew where to look also because of where I was working and and the type of work I was now doing as opposed to with Moriah. So when you're in it [00:41:00] you don't have the capacity to look for those things and you don't even know what to look for.
Colleen: And it's one thing to actually go and look for help but then finding the right kind of help. So I had gone to some things that like a loss group but it was more geared towards spouses or maybe empty nesters couldn't help me. So really having either an arrow qR code there needs to be something central whether it's included in the box or not or maybe at the next ob follow-up appointment because then I also feel like you get dropped from the healthcare team after you deliver regardless of the outcome.
Nicole: Mm-hmm.
Colleen: So
Colleen: there needs to be I don't know who would be the gatekeeper of it if it's if it's a local group or the OB gyny office. It's a funeral homes. Somebody needs to be a gatekeeper to be able to provide this in a nice box or package. Please you may not open this now but you need to open this.
Nicole: Mm-hmm.
Colleen: So
Colleen: that you have this [00:42:00] information and you can just look to see who am I gonna pick out of this one? Right. We don't know all the organizations out there.
Nicole: Mm-hmm.
Nicole: Someone I was talking to earlier and their insurance made a referral to a support organization for them. And I was like oh wow that's really nice to hear.
Nicole: I'm gonna call her back later and be like so tell me who's your and we're not gonna put the insurance name on the on the podcast but tell me
Colleen: Yes.
Nicole: Tell me about who your insurance is with because they have the records they have the coding
Colleen: um right.
Nicole: I don't know do they follow the same HIPAA policies?
Nicole: There's something that they were able to do to to share and make that connection. And you aren't always thinking of those things. You're not in the right mindset finding the right ones. You know is is it's a trial and error. Like you have to kind of go through some of 'em and and the first one might not be [00:43:00] Right.
Nicole: Right. For a lot of different reasons.
Nicole: Yeah. If you could go back and you could talk to your healthcare providers what's one thing that you would want them to know?
Colleen: The matured version of me has a good answer.
Colleen: Oh my goodness. What would I want them to know? It's not okay to dismiss people. Because it's a life you work in a life or death field. If you were a construction person building bridges or repairing the road and you dismiss your coworkers instruction or you dismiss the traffic cone it's a life and death situation for many people.
Colleen: You're in this field to help heal to help bring life. So I think for me it's not okay to dismiss. And what [00:44:00] how would you feel if the care that you provided to me I provided to you?
Colleen: I think I that would be my my statement and my question. A scold and don't do it thinking... right. Like how would you feel? The very cure that you provided to me. How would you feel if I gave that to you? I.
Colleen: Because nobody was ever disrespectful you know nobody was ever you know rude. It's just you say something and they're like okay like you're not gonna do anything with it. It's just gonna be left in the atmosphere. So you know it's it's not a a matter of of professionalism or politeness. It's just a matter of actually listening and doing something with the information and addressing the patient's concerns.
Colleen: And if you went to the dentist you wouldn't like if he ignored it if [00:45:00] you said you had a cavity or some pain in a tooth so mm-hmm. Would you be okay accepting the care that you give?
Nicole: We talk a lot about like the Preeclampsia Foundation like knowing the symptoms and trusting yourself like how about know the symptoms and listen to the patients?
Colleen: Yes.
Nicole: Trust the patients believe the patient all of those things.
Colleen: Yes.
Nicole: Our gut's not wrong. Our gut's not wrong
Nicole: so we're getting. Closer to the end of our our time and I wanna wrap up. And um before we get to that point just wanted to to ask you a couple things about your journey with MoMMAs Voices. And you talked a lot about that moment of of being able to witness some veteran wonderful patient family partners of [00:46:00] ours um sharing their story and being able to get involved in there.
Nicole: What would you say to someone that's like new and they're starting a patient family partner training. What would you say to them? Any any words of advice? Words of advice?
Colleen: Mm-hmm.
Colleen: Pace yourself as you go through the training. The training is invaluable. Did I say that right? Not sure I did but I would say pace yourself.
Colleen: It is for me I found it to be healing. 'cause healing is you know layered multifaceted. And I thought oh I'm doing good. I'm how many years out And life has gone on. Right. No there were some things that I had to sit with. And process. I'm like wow who made this training? So yes you think okay I'm on this way to advocate.
Colleen: But there's a portion of the training where you are really looking at your story and really addressing all aspects of it and looking at it from different angles and things get reviewed. [00:47:00] And I I would definitely say just really marinating on that training. It's not a microwave training and this is crockpot.
Colleen: Marinate overnight put in the smoker kind of training that will be healing and really allow you to thrive when you start to advocate because even when you are advocating and you're doing this good thing. Providers institutions other people will say things that could potentially be a trigger for you.
Colleen: And you have to be able to answer from a healed place hopefully from a healed place. So I would really say really sit on this training and walk through the program. The training is excellent. This is not air fryer microwave kind of cooking.
Nicole: So that's we see people that like slam through the training really quick and then.
Nicole: You know others that we've had people that don't finish it. And I'm okay with that because if they're not ready this is not the place to go. [00:48:00] This is not going to help you. If you are not healed on a healing journey on that pathway this is going to hurt you more than that. And so I'm okay with that.
Nicole: When people are like you know what this is it was a lot. I need to pause and I'm like okay we're here when you're ready to. You're if you're ready to we'll be here. But there's not any pressure to like you need to get through this in an X amount of time and we're judging you on this. We wanna set people up for success.
Nicole: And so we really built this training on the idea that there are a lot of rooms that I walked into that no idea what was being said. What would've made that easier? So as I take like this work and I turn it into how can I make somebody's pregnancy better it's also how can I make someone's advocacy better?
Nicole: Going into meetings where I would have my journal and one page would be all of the terms and acronyms they said that I didn't know and [00:49:00] then one page would be my notes. And that list just grew and grew and grew. And group was like what are the things that we need to teach other advocates in this space?
Nicole: So that they can walk in and feel like they can be confident they can contribute that that they have a purpose for being here and they're making a difference right? And so part of that is is the healing part. I'm so proud of the advocate readiness module that we have. I feel like it is so unique.
Nicole: And just watching it every time I've watched it when we were making it just cried like how much that hit home. And just really is something that's really we're proud of that we have that included in there.
Colleen: Yes. I second
Nicole: How- Thank you. How how has telling your story through MoMMAs Voices changed how you see yourself
Colleen: you know.
Colleen: I'm [00:50:00] proud of myself. So in my where I'm from they have a saying that goes like this it's a business. Or really it says no draws not very nice. But what it's saying is that do not walk around sharing your personal business. And you know when you think about my mother's generation or my grandmother's generation things happen and they don't share.
Colleen: They just deal with it I'm fine. Right? Very layered. I'm fine but being able to share my story in a productive way then yes. I can say you know what Colleen this is good. I'm not going to let maybe a tradition hold me back and I am going to use my voice in a purposeful way that will help others and share in a way that is [00:51:00] positive.
Colleen: I'm not sharing because I want anyone's sympathy. I am not sharing because I am. Maybe still in that liminal space where I felt like I was just in an abyss of falling and I'm just yelling out words. No I am sharing with an end in mind. And for that I would say that I am proud because maybe. Maybe old Colleen pre Moriah would have shared something professionally right?
Colleen: Educating doing continuing education courses speaking at events doing inservices. Yes. But would I have shared something so deeply personal? Probably not. Um so it has given me this this sense of courage. Not necessarily pride just I'm proud of myself but also a a sense of courage. I feel a little bit more courageous on this journey.
Colleen: It's also helped me to maybe mother the littles that we do have now in [00:52:00] making sure to give them a voice because we all have a voice. We just sometimes don't know how to use it or dunno where to use it. Um or don't even know that we have a voice that can be used positively. So it also has also changed that.
Nicole: I'll tell you one thing I did this summer. Um. I've been all over the place speaking this summer and it was a lot. And um my daughter is 10 now and I'm like yeah she's gonna come with me because it's summertime and it is what it is. And she a couple years ago she was like mom why do you have to travel so much?
Colleen: Mm-hmm.
Nicole: I just wish you would get fired so that you didn't have to go to these things. And I happened to have a meeting that I could she didn't have school one day and I brought her with me. And this was like I said two years ago and she I was hoping that like she would see what I'm doing and what what why I'm doing this and be a little [00:53:00] bit more like understanding or when I need to travel sometimes.
Nicole: And so this summer I brought her with me and we're like she's going to be the person that hands out all the paperwork she's gonna pick up all the evaluations at the end. She's gonna do all of the things like if you need a gopher like that there's your
Nicole: gopher
Nicole: right there. And it was the same group of people I took her around two years ago.
Nicole: So they they already knew her personality a little bit. It really came out. But she was working on us doing an exercise. They included her we were doing this exercise on playing do study act models and tennis balls and throwing 'em across the table and do it faster do it faster. Oh you know the ball's representative of the patient and the system and the patient called and the family said you're not doing it fast enough but your time in half.
Nicole: And so she was doing this with the teams and then afterwards they are asking the teams for what are your aha moments? Like what were your takeaways? My little 10-year-old gets the microphone in front of 350 people and she's like even as a child I learned. [00:54:00] We can do so much more with teamwork. And I'm like oh my gosh y'all this kid she's gonna be the president of something.
Nicole: I don't know what it is. One day I'm just hoping she uses it for good and not evil but she she asked me the other day just this weekend she's like mom why do you do this work? And I said I do it because I have a daughter now and I don't want you to go through a loss like I did. I don't want you to have the same experience I did.
Nicole: It's a different. Motivation now for me that I have a daughter that's a tween that you know one day like what's gonna happen. It's been 10 years since she was born. What has changed in this space? She could be having a child. She better not you know in the next 10 years but she could and what will have been improved since then.
Nicole: That's what keeps me going.
Colleen: Wow.
Nicole: So I if you ever have the opportunity to [00:55:00] take one of your kids with you to see you and participate. It could be magical. I will definitely keep that in mind.
Colleen: Your daughter sounds phenomenal.
Nicole: She doesn't fall far from the tree. All they can say. I was like we have to train up the next generation of advocates.
Nicole: She'll take over her MoMMAs Voices one day they'll be fine.
Colleen: Yes
Colleen: I love it. I love it. I love everything about that. And it's true 'cause she's so young but she already sees and knows and you make a valid point. What's gonna be what's gonna happen in the next 10 years? Right. I love that.
Nicole: Well is there anything else we haven't touched on today that you would like to share as we wrap this up?
Nicole: I really appreciate your time and getting to know you today. And just getting to to talk about some of those harder issues that fortunately not everybody gets to go through. I think just building community and reaching out reaching out to someone you know [00:56:00] even if it's just a whole space right at the time sit in silence.
Colleen: Just working on building that community and then reaching out to those you see around you.
Nicole: And
Nicole: if you're a person on the outside of the community reach out to those
Colleen: yes.
Nicole: Reach
Nicole: out to other people. It really makes a difference.
Colleen: Yes.
Nicole: Excellent. Well thank you Colleen for joining us today and sharing your story. Um and talking about Moriah and and what's remembering and honoring her and that experience and and what it has evolved into and how it's changed you and the impact she continues to make to this day is it's really important to remember.
Nicole: So thank you for joining us.
