S2, E1: Nicole Haglund on Infant Loss Awareness
*Trigger warning: This episode contains details about infant loss.*
Today’s episode requires no fancy introduction. The following statistics say enough.
1 in 4 women will have a miscarriage
1 in 250 women will have a stillbirth
3 in 1000 women will experience an infant loss
Listen to this episode with Nicole Haglund to hear about infant loss awareness. Nicole's son Noah was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) at the 20-week ultrasound. Nicole talks about her journey of birthing, loving, and caring for her son Noah for a month before his passing. We dive into her experience in the hospital and how her astounding faith has carried her through. Learn how to best support those in your life who have experienced loss on any level.
As heavy as this topic may be, you will leave this episode with hope in your mind and faith in your heart.
Resources:
Project Finding Your Rainbow - https://www.instagram.com/journeyforjasmine/
National - https://www.compassionatefriends.org/
Local (MI) - https://newhopecenter.net/
-
Leslie 0:00
Today's episode requires no fancy introduction. The following statistics say enough, one in four women will have a miscarriage, one in 250, a stillbirth, three in 1000 on infant loss. On October 25 1988, President Reagan designated the entire month of October as pregnancy and infant loss Awareness Month. On that day, he said, When a child loses his parent they are called an orphan. When a spouse loses her or his partner they are called a widow, or widower when parents lose their child, there isn't a word to describe them. This month recognizes the loss so many parents experience across the United States and around the world. It's also meant to inform and provide resources for parents who have lost children due to miscarriage, ectopic pregnancy, molar pregnancy stillbirths, birth defects, SIDS, and other causes. Now, I do hereby proclaim the month of October as pregnancy and infant loss Awareness Month. I call upon the people of the United States to observe this month with appropriate programs, ceremonies, and activities. Today, my beautiful cousin and friend is here to share her story of losing a baby. But also of carrying that baby birthing, nurturing, and loving her Noah for one month until his passing. She is brave, faithful, healing, and destigmatizing infant loss for us all. All of that, and so much more on today's episode of the Motherload.
All right, Nicole. Hello, welcome. Thank you. We've been talking about doing this for quite some time, ever since I kind of started this concept of the mother lode and recording episodes, we've both, you know, saw the need to discuss this topic. And the fact that you are in my family and have gone through this specifically. On a scale, if there is one that I believe is the hardest and the greatest, but yet you've shown extreme strength and faith. And there is no better person for us to listen to and be inspired by than you. Wow. Well, thank you. On this topic, for sure. Yeah.
Nicole 3:13
I appreciate that.
Leslie 3:14
Thank you. Oh, well, it's true. It's true. It's very true. A woman of great faith is what I call you all the time. And it's inspiring to me. And I know that it will be to so many. So that's also why I felt like it was so important for you to be able to speak because your words hold a lot of weight and inspiration because you not only talk the talk, but you walk the walk, so well. Thank
Nicole 3:39
you. It doesn't feel like that every day. Some days are harder as you know, that's motherhood but the thank you, for sure.
Leslie 3:48
Yeah, so I was gonna say Nicole is going to share her story but I actually think Oh, my phone is ringing and it's my preschoolers teacher. So hold the phone. Oh my god. That is great. That is so the teacher just calling to say the Georgie ate the blueberry chapstick. Right? She hopes she doesn't get sick, yummy snack. Oh my gosh. Okay, back to it. I was gonna say that you Nicole was going to share her story and it is your story. But do you prefer to call it Noah's story? Oh, goodness.
Nicole 4:24
Yeah. I think that that is a good, good thing. Because I have many stories. But it is definitely his story to tell he he is a force to be reckoned with. And his story should be his
Leslie 4:38
Oh, I love that. Well, Nicole's got her rainbow baby right now on her lap. And she's nursing in true mother lode form. I love this multitask. Yeah, yeah. Don't at all. But yeah, absolutely. Turn it over to you to tell Noah story.
Nicole 4:57
Well, even before Noah A loss was not something new to us, we struggled as you did getting pregnant in the first place. Well, getting pregnant was not the problem, we just kept having recurrent losses. And so we had three miscarriages, right on top of the other. And then two years of just complete infertility, and we had pretty much given up on the whole thing. And then we surprise got pregnant with our first Jacob. He's now six. And and then with Luke, our second, he was a surprise, we were pleasantly surprised by that. And then similarly with Noah, we were not even trying and surprised pregnant a third time. And so we were thrilled with baby number three. We got to the anatomy scan thinking, oh, you know, typically in the past, you know, anatomy scans were a exciting day, you know, Oh, are we going to have a boy or girl, we get to see the little baby up on the screen, it was always an exciting day, never an anxiety filled day. But at this particular scan, when they got to his heart, they spent more time there than normal, which kind of set my mom antennae playing, something's wrong. And so after she stepped out and came back in and got some more pictures, which was even scarier, and then the doctor started talking to me about what they had found. And they had found something called hypoplastic left heart syndrome, or HLHS, for short, which is essentially half a heart he only had half a heart. hypoplastic means that the left side of his heart was very, very small. And so that called into further testing, we had to switch obese, and switch over to University of Michigan where they had specialists and the people that could handle him. So we did more and more tests. We did an ACO that showed that in addition to his hypoplastic left heart he or what they call uni ventricle. They had he also had a total anomalous venous return. And so those two things combined were pretty serious. And he was going to have to have surgery right after birth. Typically, with hypoplastic left heart, you could at least have a day or so with them. But this was pretty serious. And even in the video that we have after he was born, you could see him really struggling to take breaths when he was crying, which is the only video we have of him crying. You could really see like his little chest sucking in that he was really having a hard time breathing. So he was born and on September 23, and had open heart surgery hours after being born. It was it did not go as planned. And so he was put on ECMO to give his heart and lungs arrest, which was the initial plan ended up being an ECMO the entire time. They tried many different procedures. He had a second open heart surgery, and he fought so hard. But ultimately at one month, we decided to let him go he had fought hard enough and his organs were starting to shut down. And so he actually, he died on October 23 at 1023 in the morning, which was an interesting thing, if you believe in science that has to mean something. And so in the wake of his death, we had a really hard time, understandably so. Why did this happen to us? You know, we are followers of Jesus, we do everything in our lives to please Him and to to tell people about how amazing he is. And why did this happen to us? It was just a really, really, really hard time. Not to mention, we had two little ones at home that we had to explain all this to Oh, yes. So it was really really, really tough, really hard. And it's still hard. You know, I mean, grief doesn't just go away because it's been a year or we're coming up on two years. It just doesn't go away. It's something that we've had to learn how to deal with learn how to cope with. Yeah, live with Yeah, absolutely. And still remember him and not just file him away in a box in the back of our heads and in the back of our hearts but to to celebrate him and to remember him but to cope with all of the grief and the feelings that come with it. So,
Leslie 9:53
I mean, I I'm sure you hear these words all the time because I I mean, I just all I can think of is I can't imagine, because I've not. I've, it feels like how would you get through? How would you survive? You know, when you have an experience something you're like, Oh, I couldn't I couldn't there's no way.
Nicole 10:18
Yeah, we we don't know how we got through it even even today. Like, just the other day I looked at him and my husband and I said, it feels unreal. Yeah, it was so crazy that it feels like we dropped it up or that it was a movie that we watched or something. It feels like it didn't actually happened. Yes. So crazy,
Leslie 10:38
like an alternative universe. Yeah,
Nicole 10:41
yeah. It's bizarre. Uh huh. To think that it actually happened that we actually went through it.
Leslie 10:46
Yeah. And I mean, I've even equated like after having your first baby, because it's so like, the experience of coming home and like, what am I supposed to do now? And like, this new normal? That's so bizarre. I, I even equated that time period of my life to feeling like it was otherworldly, like, yeah, this period of time. That didn't feel like it just kind of stands out. Separately, if you will, to everything else. Yeah. So yes, I can only imagine like, and you you were living in the hospital.
Nicole 11:26
Yeah, we would share our time for that month, we would be at the hospital. Ronald McDonald House put us up as such a blessing.
Leslie 11:34
That is an organization that Scott and I have always been big supporters of rightfully
Nicole 11:41
so they fantastic. They were absolutely amazing. They put us up in a room that was on the same floor as no SP CTU. So I would be able to go and get catch some hours of sleep and then go right back to his bedside. He wasn't in a room in a private room, he was in what they call a bay. And so it was very overstimulating, because he was in a bay full of lots of babies, all all heart babies. So there was lots of monitors going off and machines beeping and people coming and going and hustle and bustle constantly. And so to have a space that we could retreat and sleep and like, get some actual sleep was everything and to be able to just be right there. It was so wonderful. And then we would come home on the weekends to spend with the boys. And my, my parents in my in laws were incredible. They just totally stepped up and moved into our house to take care of our kids while we weren't there. So yeah, it was a family thing for sure. Everyone was involved. Have to Yeah, yeah. I feel like any mom needs support like that. I don't know how moms do it, who don't have their parents nearby to help as much as mine? Do? I don't understand it. And that's in a good scenario with healthy children and normal life. Yeah. So to do what we did without our family surrounding us, there's no way we would have made it through.
Leslie 13:10
Yeah, yeah. Yeah, I always think about that, like, here we are people that have this, like great health care, access to great health care and supportive families and the tools and the resources that we need. And it's like, what about the people that do not? I mean, there are people that don't, and how do you get through something like this? And that's, you know, a purpose of ultimately this podcast someday making money that that is what my purpose is, is to support mothers who are going through things that don't have access to the resources we do, because look at how much we struggle. Yeah, and yet we have those things. Yeah. So what the heck like Yes. So yeah, that's a little bit of a side note, but important for us to always remember. Certainly. Now, when you mentioned there were many babies on that floor that had bays Were there other parents they're going through something similar to you that you were able to connect with and find hope or peace from
Nicole 14:25
definitely we were able to in the bay right next to Noah's there were two separate families that came through and thankfully their babies did not have a severe of a congenital defect is no it did. And so their babies were able to be to be fixed up and sent home in a timely manner. So that was wonderful. And actually after Noah passed, I had been able to pump while I was there while He was impatient, and I had stored up what equated to be about six gallons. Oh, breast milk, my gosh. I felt so out of control with everything happening with him. But I could control that. I could control how much I was pumping. And so I pumped like a champion, hoping that he was going to need it. And so after he died, I was able to donate my breast milk to one of the families. Their story is incredible. They adopted the baby that had the heart condition. And so the fact that I could give breast milk with antibodies and nutrition and all of those things to him, yes. So amazing. And they were incredible people
Leslie 15:32
full body chills.
Nicole 15:35
Yes, they were incredible people. And so it was such an amazing part of that journey to be able to be friend, both of those families and see those babies be able to go home. And I'm still friends on Facebook with both of those women. And they're, they're incredible people. And it's so fun to watch those babies grow up. It's bittersweet, obviously,
Leslie 15:59
I was gonna say, Yeah, you know, what
Nicole 16:01
would be their age, but it's mostly sweet to see them be able to grow and thrive.
Leslie 16:07
Yeah. Yeah. Wow. I mean, again, your perspective on all of this and your faith. I mean, that's what allows you to be able to say that, you know, you're, you're so happy to see these other children grow. And but what do you do with feelings of like, you mentioned, why did this happen to us? And, you know, looking at other people with children of Noah's age. Do you feel that you know, do you have those feelings? Where you're like, what, why mine and why Noah? And and what do you do with those feelings?
Nicole 16:48
Of course. Yeah, definitely. Those feelings have waned, you know, over the last couple of years. I felt them very strongly in the moment. But I, gosh, that's, as far as my faith goes, that is a complicated question. And it's not something that I have an answer to. I don't think I will, until I am in heaven and I meet Jesus face to face maybe then he'll tell me the whole purpose behind it. There are many stories that have come out. I knew there's many stories that have come out of his death that people have shared with us after the fact that have been beautiful to to hear
Leslie 17:37
that help give that maybe purpose. Absolutely. That Yeah. How leader understanding of the life's, you know, things that happen to us in life that feel out of our, our idea of what we desire or shouldn't deserve?
Nicole 17:55
or Yes, yeah, that definitely helps. It gives some sort of purpose, it still doesn't help. Why my baby, why did my baby have to go through that in order for X, Y, and Z to happen? I'm glad that those things happened. And that, like you said, it gives purpose to what happened to Noah, but why did No, I have to die in order to those things have to happen? It's not something I have an answer to. Yeah. And it's not. It's something I'm living with, you know, it's just, I, I don't have an answer. And I have to be okay with that for now.
Leslie 18:29
That's an amazing answer, because it tells us that we seek answers. So much so in anything, right. And there aren't always answers.
Nicole 18:43
No. Which is infuriating for someone like me. I am super type a very organized and most things. Yes. Love answers. Do not love gray areas. I love black and white things. Which life is not. So it's right. Frustrating.
Leslie 19:00
Yeah. And you said, we don't have answers. We're learning to live with it. And gosh, that's true of so many difficult things in life. Yeah, absolutely. I think that is the struggle is the trying to fix it, change it or have a reason for it. Yeah. And as long as we're in that struggle,
Nicole 19:25
it's exhausting. That struggle is exhausting. And that's why when I say that I look at these other children, and it's mostly sweet. It's because I'm choosing the joy. I'm choosing to feel the joy and not the pain. I mean, the pain will always be there, but I'm choosing to revel in the joy because it is exhausting to stay in the pain, especially when I have no answer to why it happened in the first place. Yes, yes, it's just easier and makes me happier to choose the joy.
Leslie 19:58
Yes. I love that. Hmm, that's amazing. Are there any specific tidbits or things that you can say that while you were in the depths and throes of this, that helped you stay afloat?
Nicole 20:21
Oh, goodness, a lot of prayer, a lot of prayer. And knowing that the prayer doesn't have to be this fluffy, nice thing that God can take us in our frustration, God can take us in our anger, he can take it that was helpful and to have our pastor be able to talk with us and give us that reinforcement that Yep, he's the creator of the universe, He can take you being upset. You know, talk to him, give him everything you got. That was really helpful. Yeah, to be able to be honest with our God. Yeah. Which is hilarious, because he knows what we're feeling anyway. Right. But that was helpful. We started a blog. And so that was helpful. The blog came out of not being able to update people regularly and getting an influx of texts, you know, how's it going, what's going on, was too hard to communicate to everybody. So he started the blog, to be able to get out information, you know, regularly as to what was happening, because his condition was changing. So rapidly every day, there was new things, things changing. So that was helpful, because people were able to encourage us like praying for you thinking of you, you know, whatever, yes, a lot of people from our church would come and do prayer groups outside Mott outside of the hospital. That was super encouraging. We didn't have time to really go down and like be with them. And also it was in the I should say, it's it was in the middle of COVID. It was in 2020. So, so people weren't allowed in. And we were still very leery of being around people being around germs and bringing that then to know us. So we didn't join the prayer that they the gathering, but it was so helpful and comforting knowing that they were there and supporting us. Yeah. People would send you know, DoorDash and Grubhub gift cards, that was extremely helpful because we were living in the hospital to be able to get delivery, food delivery. That was awesome. Yeah. And then after the fact, after he died, you are amazing. You went out and bought stuff for our kids, which was amazing that they weren't forgotten. They still talk about it to this day, that Auntie Leslie came over with L. And we're just loved on them like that they really, really loved that, that they weren't forgotten and all of it.
Leslie 22:47
Yeah. Yeah, that's a whole nother part of this is that you had two little ones at home. And not only just to care for which you have said, thank the Lord, you have amazing family that helped you with but to help them understand what was going on? Absolutely.
Nicole 23:06
The hospital was amazing. They had tons of people. To be honest, it was a little overwhelming how many people they had to come and help us not only palliative care, but different people to come, therapist to come and talk to us about, you know, how are your kiddos doing at home? You know, it's we found that it's really helpful to talk about the whole situation this way and not this way, using these words and not these words, for example, to never talk about Noah being sick, because psychologically they'll think if they'll think, Oh, my goodness, my throat is scratchy, I'm sick, I'm gonna die. Amazing. So we it was very helpful to have that support and to be able to, because I would never have thought about something like that. But it it definitely helped to be able to even pick the the verbiage that we were using with the kids Yes, to be able to do that. And I started following tons of influencers on Instagram that had different children who different influencers whose children were recently lost. It was so encouraging to be able to hear what they were going through and get ideas of how they were talking to their kiddos and different things that they did for the burial of their children that they lost. was able to use some of that in our own lives. And that was very helpful as well.
Leslie 24:33
Yes. Gotcha. So yeah, I, I want to just recap these things that you said, were helpful during this time. And it sounds to me like a word I love to use is the authenticity and you're even saying to be authentic with your feelings and true to yourself even so much as when you pray. A, that you are your true self in the face of anyone you're speaking with, really? And that feels good, and it feels real. And I just feel like that is such a underlying message for mothers in general, yeah, that there's nothing you can say that you're going through or that you're feeling. That is probably not something that we've all felt or reveal. And it feels good to be real. It doesn't feel good to put on a face to hide. No. The second thing you said was starting a blog. And to me, that's storytelling. Yeah. And that is so important. And then your words are kept, right like you have kind of like, this treasure of your words and explanation and feelings during that time. And reflection, and storytelling is so important. In whatever way that feels good to you. I think that that is therapeutic and helpful. And you're talking about people stepping up, you know, using more than just words. And words are great. But I do believe that there are many times in life where we need to slow down and we need to serve each other. And that does go beyond just well wishes.
Nicole 26:31
Totally. It was so helpful. And it's not even just about the stuff. It's not even about some amazing gifts that you brought them. It was about the fact that you just did something it's the gesture. Yes, I went abroad construction paper and cran would have been justice. Yes, of course. Absolutely. Yes. When you're in the thick of it, it's hard to ask for help. You don't even know what to ask for. Exactly, exactly. And that is one of the biggest things I've learned from this whole thing is that when I see someone struggling, I want to just show up, I want to just send a gift card. Yeah, I want to just send food, I want to just be able to do something to help them. Try and take that step. Even if it doesn't turn out to be the right thing to do something so that they know that they're being thought of and that someone cares, do the thing, do the thing,
Leslie 27:25
even with I think totally different application, but even just when people have a new baby, it's like a mom's not gonna ring the phone and be like, Oh, hey, so I was thinking you could make me a lasagna. Totally. You could drop it at 4pm Don't ring the doorbell will be napping like this isn't what's gonna happen? No. Do the thing. Just go take the mom the food if they put it in the garbage can? Who cares? Absolutely. Just the, you know the doing and it's gonna be received. It's needed. But we don't know what to ask for. Yes, whatever, bring bring something for the new mom and leave it on the doorstep. Whatever. Like yes, I think it's really important. We get caught up in gosh, I didn't know what to say. Or I didn't know what to do.
Nicole 28:18
Absolutely. Yes. Oh, and I feel that that is me. That is me. I want to do something. But I don't know what to say. I don't know what to do in this situation. Yes. Especially with grief. Like, I don't know. I don't want to mention it. I don't want to I don't want to hurt them. Yeah, I don't want to even bring it up because I don't want to hurt them. No, say the thing. Bring the food. Yeah, you know, send the gift card. Yeah. You know, whatever. It's from someone on the other side. Just having someone thinking about you thinking about your baby. It means the world. Yes. So it breaks that isolation that you feel when you're going through it?
Leslie 28:55
Totally. And that's that validation ticket. Like you're validating that I'm struggling over here. That yeah, I need something. I don't know what it is. And you might not either, but it's something Yeah. And I Yeah, the validation is so important. I, I want to there were I want to talk about something I found in kind of poking around and doing some more research. The three phases of miscarriage and it's something I kind of learned because I was trying to pinpoint well wait, I knew I had some later term miscarriages but I wasn't exactly sure you know where I hit so anyway. Early miscarriage is weeks one through 12. Late miscarriage is after 12 weeks, but before 24 weeks And then after 24 weeks is
Transcribed by https://otter.ai
