Navigating Life After Loss: Podcast Episode #171
Kristin chats with Michelle Valiukenas from the Colette Louise Tisdahl Foundation about navigating life after loss. 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’m here to chat with Michelle Valiukenas today. She is the proud mom of her angel sweet pea who she lost due to miscarriage. Her angel daughter, Colette Louise, was lost at 9 days old, and her only living child, her rainbow baby, is Elliot Miguel. Inspired by her journey with Colette, Michelle and her husband founded the Colette Louise Tisdahl Foundation, whose mission is to improve outcomes of pregnancy, childbirth, prematurity, and infancy, as well as aid in the grieving process through financial assistance, education, and advocacy. Their flagship program financially assists families dealing with high risk and complicated pregnancies, NICU stays, and loss. The organization’s ability to help families relies on donations and grants, and they are grateful if you’re able to donate. Michelle also participates and advocates on issues of maternal health, maternal mortality, infant health and safety, and pregnancy complications. Michelle lives in Glenville, Illinois with their son Elliot, husband Mark, and dog Nemo. Welcome, Michelle!
Michelle: Hi. Thank you so much for having me.
Kristin: So happy to chat with you. I would love to hear more about your personal story and why this was on your heart. I know it’s so much work to start a foundation and to maintain it and promote it. I would like to hear more about your journey.
Michelle: Yeah, absolutely. I think the journey began when we started trying for kids. And, you know, we’re both reasonably healthy people with no real issues, so we kind of expected a couple of months, and the tests would show that we would pregnant and we would go on. And really what we found was that over and over again, we weren’t getting pregnant. And when we sought out infertility testing and results, it was really an unknown cause. That’s particularly frustrating, and I think that was sort of the start of the loss of control that you have over so many things. So we started with infertility treatments, and that in and of itself is a whole big mess of things that – a lot of stuff that happens; a lot of timing. Again, the loss of control. You don’t have —it has to go by how your body is reacting to treatment, so you no longer have the control over your schedule. You’re trying to do this; I was trying to work at the same time, and having to take days off and come in late and all of that. It was a difficult journey. When we finally decided to go to IVF, we got pregnant on our first round. And that was – we were thrilled. We just thought, okay, maybe we just needed the extra help. We were thrilled. We told everybody in our family. It was really just an exciting time. And a few weeks later, I started bleeding, and we went to the doctor for an ultrasound check, and they could see a gestational sac, but no baby, so they said I was in the process of miscarrying. We expect it will pass naturally, but we’ll do bloodwork now, and then we’ll have you repeat it in a few days just to make sure. That was the Friday before Mother’s Day of 2017. I still have visions – my husband had decided – because I said, finally, I get to celebrate Mother’s Day. So he had planned things like – later on, he told me the story of – he was on the phone with Edible Arrangements saying, please, you cannot deliver this. Like, you cannot deliver this. So every once in a while when I need to laugh, I think of him, you know, tackling the delivery guy with fruit all over our lawn. I think that, you know, really, laughter was really an important thing, and that was the thing that carried us through all of this. When I went back for repeat bloodwork, they found my numbers were rising, so they had me come in for an ultrasound. It was really at the point of, maybe you’re not naturally miscarrying, and you’re going to have to do a D&C. So during the ultrasound, they found a heartbeat and said, okay, we were wrong. Baby is just measuring a little bit small, and that’s what we didn’t see a few days ago. So you’re pregnant. You know, start back up and everything. And that’s really stunning news to hear and just really kind of messed with us. And so somehow we managed to go to work that day, and after work, I was meeting up with my sister. And as I was meeting with her, I felt a gush of blood. So I fully miscarried and ended up in the ER where they told us, yes, everything has passed; no gestational sac, nothing. So having to relive it again in such a short time – we were talking Friday to Wednesday – was really tough, and that really took a strain on us. That was a really low point for us in our relationship and our marriage, and I found that we were sort of pushing each other away in a lot of ways instead of trying to grieve together. That was something that I made sure, after we had been in that for about a week or so, I really made sure of that and insisted that we start couples counseling and really work through that, because I thought, we can’t do this where we’re pushing each other away. This isn’t going to work. I wanted to get right back to trying again, and my husband supported me. We had a failed IVF, and then we got pregnant with Colette. And, you know, that was – we were so thrilled. Oh, my God, did I have pregnancy symptoms. We actually found out we were pregnant with her a couple days after Christmas 2017, and at Christmas, apparently my whole family knew because at one point, my sister gave me a tote bag that had a picture drawn of my dog and his name, and I started crying. They were like, it’s not a crying thing. Like, what is going on with you? So I had every pregnancy symptom, and terrible morning sickness. That is the most misused word because it’s not morning sickness. It’s just all day sickness. But that all meant I was still pregnant. So we went through and we got past the first trimester and really were excited. I was excited to tell my employees. I was excited to tell the world, my friends, everybody. And everybody was so excited for us, and things were going well. We crossed the second trimester. At 21 weeks pregnant, I went to a standard OB appointment. Actually, that day, I felt the best I had felt during the entire pregnancy. I had energy. I finally was like, oh, this is what they say in the second trimester. You have, like, this boost of energy. I get it now. Okay, I feel better. And my blood pressure was 188/110. And so I’m sent to labor and delivery, and then I was admitted to the hospital and was told, you’ll be here until you deliver. And just to give you a frame of reference, that was the evening of May 8th, and I was not due until September 7th. So a really long time. And what does this mean? I went with it, and one of the things that really started sticking to me was that when they told me that, I had a million questions in my head. Everything from what I now realize as a parent is the stupid, minor stuff at this point. Like, we don’t even have a car seat. We don’t have a crib. What are we going to do? To, you know, the important stuff, like I supervised a team. What we were going to – you know, how we were going to – how was I going to do that from the hospital? I hadn’t had a plan. There wasn’t a backup for me. There wasn’t, you know, all of that stuff. To, am I going to survive this? Is my baby going to survive this? And so really kind of struggling with all of those things. And it’s really scary. They come in, and they start spouting a bunch of numbers at you about survival rates and what their treatment will be once you get to this week, all of these things. At one point, I had a doctor who said, let’s just sign it now since we know we’re going to do a C-section. And I said, well, maybe not, and she looked at me, and she said, “We’re going to do a C-section.” All of those things. Everything was just pulled away. But when I had time to settle, I really thought about, where am I blessed? And one of the things that I really thought of was, I didn’t have to worry about money. In all of this, that was a big thing that was just off my mind, and I knew how lucky I was to be in that position. So I started thinking already at that point of doing something, and when I said doing something, I didn’t know what that meant at that point. And it went on, so ultimately, I was in the hospital a little over three weeks. When we had done an ultrasound when I was first admitted, Colette was measuring a little bit behind, and the doctors were not super scared. They were hoping that once they regulated my blood pressure and everything, that she would catch up. When they did a repeat ultrasound, what they found was not only had she not caught up, but she had had no growth in that three-week period. So they came basically saying, you know, really, we think that the best thing to do is to deliver because we have more interventions we can do on the outside. So I had an emergency C-section, and they pulled her out. It was a lot of things that she really defied right at the beginning. One of the things they had said to us to prepare us, and everyone had said to us a bunch of different times, is “You won’t hear her. She’s too young to cry or make sounds.” And after they took her out, some of the chaos was a little bit over for me, at least, and they were taking care of her. All of a sudden, the room got quiet, and there was a little squeak. I said, “Is that her?” All the doctors said yes, and they said she shouldn’t be able to make that sound. And so I thought, well, of course. This is my badass daughter who is going to defy everything, right? They had warned us about one of the worries of interventions was if the smallest intubation tube didn’t fit for her, then they couldn’t intubate, and then they weren’t left with very many options. And the second to smallest fit her. It was just all these little things happening. She was in the NICU; straight to the NICU. That, again, sort of is just a really chaotic time and stressful time. I think the best advice that I got was from my mom who was herself a former preemie mom. My sister was about eight weeks early. She said to me, “Okay, look. This is a roller coaster. I mean, it’s a roller coaster. You’re going to feel great in the morning because your baby is doing so well, and then by the evening, you’re going to feel terrible because all of a sudden something happened. And then vice versa. Sometimes you might ride the roller coaster up and down two or three times in a day. You just have to hang on.” That was really important advice that I always appreciated having because that is really what happens.
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Michelle: We settled into kind of a routine once I was released from the hospital. So my husband would get up early, and he would go into work, and on his way into work, he would call the nurses. Since I was recovering from a C-section, I would move a little bit slower. So I would get up and move slowly and then get ready, and I would go over to the hospital and usually stay there most of the day.
Kristin: That’s a lot.
Michelle: Yes. And then my husband would join me after work and we would spend some time with her, and then we would both go home. And when my husband would call the nurses in the morning, he would send me a message or give me a call and say, like, oh, you know, this happened over night, or she’s stable or whatever it was. And so on her ninth day of life, same kind of plan happened, but my husband called me, and he said, yeah, so when I called the nurses, they put the doctor on. And I thought, oh, shit. And he said they had to jumpstart her heart last night, and there’s some concern about how she’s doing. And he was like, I’m going to go into work, but let me know anything. And I basically got dressed very fast and got out the door and went to the hospital. And I was in denial. Like, oh, you know, we went through this. There was another time where they called us at 3:00 a.m. and it was a whole thing, and she pulled through and she was fine. And when I got there, the doctor said to me, yeah, hold on, let’s talk. Again, these are kind of those words that you know in the medical system – you’re like, crap. And he found a private room for us, and he proceeded to tell us – which was a worry we had always had – so typically, with micro-preemies who are that small – Colette was a little over a pound when she was born – they will place them onto a certain ventilator, and that is supposed to be a temporary thing to give them time for treatments and things while they get healthier, and then after a time, they’ll switch them to a different ventilator because that first one, while it’s amazing and wonderful and helps so many micro-preemies, can also, after a little bit, start stripping the lungs. And so they had tried to move Colette several times onto the other ventilator. She would take it for maybe five, ten minutes, and then they would start to see numbers crash and they’d have to bring her back to the first ventilator. So really, it was now that what we feared was they couldn’t get her onto the other ventilator, and the first one had started to strip away at her lungs, and that she was suffering. And they just didn’t see that they could make it better. They were going to do everything they could, but they really wanted us to be aware of what was going on. I sat there and listened and nodded my head. Again, total denial. It was like, oh, they’re going to freak us out, and she’s going to pull through and she’s going to be fine. And he said, you can stay here as long as you want, and as he turned to leave, he came back and said, do you believe in baptism? I said, I do. And he said, I think it’s time. And that to me was really – so, this is really what you think is happening. And so I called my husband, and he came and family members came. I still was in this, like – she’s just going to pull through. I mean, this is not what happens. And then I started to turn when she was going – they were going into shift change, and shift change in the NICU, parents weren’t allowed in. So I was actually in the family room with my sister-in-law, and then the nurse came in and said, Mom, you should come in. And I was like, it’s two minutes to shift change. So they let us stay throughout shift change. At some point, and I don’t remember exactly when that happened – they were pretty strict about two visitors, so it was my husband and I in there. At some point, my sister was able to come in. And it was like, you’re bending these rules, and you’re only doing this if this is really serious. So ultimately, we saw her numbers drop, and they said, we will keep her alive. We’ll baptize her, and then you guys will get to hold her while she passes. So we said goodbye in the best way possible. We were in a family room, and so our parents, both of our sisters, and both of our brothers-in-law were able to be there. And we all got to hold her. We all cried together and hugged and did everything and ultimately said goodbye to her. It’s still surreal to think that’s what happened. It’s the most devastating time. They come out, and I still remember somebody coming in and talking to us and saying the phrase, do you guys have a funeral home in mind? And just thinking, no. Both of my parents were alive. My husband was in college when his father died. We hadn’t planned a funeral. We didn’t know what to do. And you’re definitely not thinking that when you’re preparing to have a baby. You’re not thinking about a funeral home at that point. So it was really just – it was devestating. It was sad. It felt isolating. You know, it was just one of those things – I mean, I felt so much guilt thinking it was my fault and it was my body. But again, sort of that money thing came up. It was – at one point, I guess I must have had a weird look on my face, and the person who had come into the room, and I don’t remember if it was a doctor, nurse, social worker or other random person – I don’t know who it was. He said, if money is an issue, a lot of people cremate because it’s much cheaper. And that has always – like, it hit me hard that day and it’s always stayed with me. Why are parents having to choose something in how they memorialize their child who died over money? And that really stuck with me. Again, it was all those money things just coming in throughout the process.
Kristin: Like medical bills and then you’re looking at –
Michelle: Medical bills and cost of transportation, you know, one of the people who was in the same pod as us in the NICU who had probably a good – I’m in the Chicago area – in good Chicago traffic, had probably an hour and 15 minutes’ drive because that was the closest NICU to them, and so that expense of gas. And this was when gas prices were good. Now if we think about as gas prices have risen and dropped and all that, how much worse that is. Usually at a time when one or both parents are either working less or not working. All of those things really were folding into my mind. So really left with thinking about it, we decided, this is what we’re going to do. And so we established our nonprofit foundation with really trying to do financial assistance for kind of what we see as essentially three stages of Colette’s life. High risk pregnancy or pregnancy that develops complications; NICU stay, or loss. And in a lot of ways, this is me running it; it’s how I’m parenting Colette, and it looks very different. It’s very different than I parent my living son, but that’s really what I think is really truly important is to be in that spot and be able to do it. So we’ve been in operation a little over four years. I think we’re coming up probably about a month on our anniversary from the first grant we gave. We’ve given away over $1 million in grants.
Kristin: That’s amazing.
Michelle: To families across the nation. The need is astounding to me. I probably had the biggest vision of what this was going to look like and what the need really was, and I am constantly shocked by just how much need there is. So yeah, that’s really what we’re doing. Along the way, we realized how many issues the general public wasn’t aware of, so we also did some education. And then advocacy wherever we can because really, some of these problems are so structural and so institutional that we need to really change those in order to change the course of some of our mission.
Kristin: So how do families, if they are seeking assistance from your foundation, how do they connect with you?
Michelle: Absolutely. They connect on our website. There’s a brief application that they fill out, and then we also need a verification. That’s typically – the vast majority of times, it’s social workers who are submitting those, but it could be a case manager. Could be we’ve had some doctors and nurses. It could be a death certificate or other paperwork that’s from the hospital that establishes is. But basically, just a third-party verification of it. And once we have those, my husband and I review them every week, and we give a decision. So basically, if your application and verification and everything is in Friday at 5:00, then we review it on Saturday, and you’d have a decision by Monday morning. And then once you get a decision, the decision is usually, we’re going to approve you for X dollar amount, and then clients have to submit where they want to spend that, and we would pay the bills directly to the service provider. So directly to a utility company, directly to a landlord, that kind of thing. The only kind of, I guess, exception of sort is we do gas gift cards, and that had been our biggest request for some time, and we have actually now seen in the last couple of months that rent is actually a bigger need. We’re actually giving away more in rent dollars than in gas gift cards.
Kristin: That makes sense with the rising housing costs.
Michelle: Which is also – I mean, this is all interesting to see, like, how shifts in the greater world affect families and where they’re at. So that’s basically what happens. It’s a very quick turnaround. That was intentional because we know things are happening very fast, and the people need help when they need help. And usually when they’re turning to us, things are already pretty bad on their end. So that’s really what the process is.
Kristin: And how do our listeners get involved or donate?
Michelle: So donations are great. We really – what we have built in as structure is we have a generous donor who is covering essentially all of our overhead. So postage and website hosting and all of those things. So donations to us go 100% to families in need. So it just goes straight into that fund so that you know that you’re doing – you’re not paying for anything other than helping a family, and we really appreciate that. The ability to give really is affected by what’s coming in, so we appreciate that, for sure. In terms of getting involved, spreading the word, whether that be for families who might need help or people who might be interested in donating, I think that’s really important. We’re a small organization. It’s essentially very much just me. We’re doing a lot on a national scale, and so getting out the word, sharing some things, learning about something, and then really deciding to share it is really helpful for us.
Kristin: That is fantastic. So you are – not only do you have the website, but you’re also on social media, so if our listeners wanted to connect with you, what channels do you prefer they find you on?
Michelle: So we’re on Facebook, Instagram, Twitter, LinkedIn. Any of those are great ways to reach out to us if that’s your preferred method of communication. We will respond and let you know how we can help or answer questions or anything like that.
Kristin: Wonderful. Any final tips for our listeners navigating loss, Michelle?
Michelle: Yeah. I think, you know, feel what you want to feel. Grief – you know, I think we have this notion that grief ends at some point, and it doesn’t. You know, grief is reactivated over and over again. And we have – we just came off things like school pictures, right? The first day of school pictures, which are really popular to post on social media nowadays. But they’re really triggering for loss parents because if they’re seeing somebody who’s the same age as the child they lost would have been, that’s really triggering. That’s really difficult. And so sometimes there’s a lot of grief over that. You know, we’re coming up on Halloween; that can be really tricky. The holidays can be really tricky. And then there’s just the random Tuesday where out of the blue it kind of hits you and overwhelms you. And all of those things together – it’s a lifelong struggle, and it’s working through it. I am a big proponent of therapy, so I’d say individual therapy, couples therapy if you can do it, because there’s still conflict and there’s still issues to work through and to just make sure you’re communicating about how all those things are affecting you. And then I always recommend finding sort of your village, your people, because I have found, and I have a couple of really good, close loss friends who are also parenting after loss, and it’s really nice because all the thoughts you have, all the actions you take that you know are really resulting from grief – it’s nice to be in a space where you can just reach out to other people and say, this is the thought I’m having. And you’re getting the, “Yep, I get that. Uh-huh. I felt that way, too.” And you’re not feeling like you’re alone. And so I think those are the things I can really say, you know. These are tragedies that honestly will bring out the true nature of other people in your lives, and there are people that are not going to be supportive, and it’s really devestating when that happens. You have to make decisions as to whether or not those people should remain in your life. And if they are, how you’re going to interact and deal with them. That’s really hard, and I think – so that’s why I really say having your village is nice because you can sort of bounce things off and say, you know, I have this one friend who is saying X to me, and we can kind of talk through that and say, what does that mean, what does that look like, how are you going to deal with that. So I think that’s my best tip. For parenting after loss – parenting after loss is tough, you know? There are things that I do and ways that I react – I go in the worst what-if scenario in just about every case. If he starts with a cold, I’m starting to worry about, oh, my God, what if it turns into pneumonia or COVID or anything like that, and that’s really just because my experiences in my life have led me to this feeling of, like, we are going to experience the worst case scenario. And luckily, I have a very healthy, very active toddler who is always happy, so that helps a lot. But still, it’s hard, you know? It’s just all of those things. Right now, he’s not really talking yet. He’s in speech. And you can look up things, and I have gone to everything from, oh, my God, he’s deaf – which makes no sense, and we’ve tested him now to – you know, just all the extremes that I’ve gone to, when all the experts are telling me, especially COVID babies, are a lot of the time being very delayed because they didn’t have the same social interaction with other kids that they would have and other adults. And so it all makes sense to me logically; it’s just those feelings, those pit of the stomach feelings that you have, and I think not only is it okay, it’s just how it’s going to be, and so I think, you know, really the individual therapy helps to make sure that you are not over-worrying and, you know, doing things that are really harmful to you and harmful to your child, but also that you are still following your instincts and doing that, and it’s hard. Parenting is tough. We all know that. And trusting your instinct is a good thing. Sometimes it’s hard to tell when it’s just my mom instinct kicking in or the feeling, or if it’s coming from loss. And because I never parented without the loss, I don’t know. You know? I don’t know which one it is. And that is really difficult to navigate and to figure out.
Kristin: Thank you for sharing those tips and your story. It will help so many listeners, and especially the work you’re doing with the foundation.
Michelle: Thank you.
Kristin: It was a pleasure chatting with you, and we’ll be in touch soon.
Michelle: All right. Sounds great. Thank you so much for having me.
Kristin: Thanks, Michelle.
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