Name: Nicole Brynelsen
Location: Wisconsin, United States
Child's Birth Year: 2015
Keywords: Pregnancy After HIE, Sibling Relationships
Nicole and her husband live in Western Wisconsin with their four children. Their daughters, Ariana, Isabelle, and Penelope are ages nineteen, thirteen, and three respectively, while their son, Elliot, is six years old. Nicole loves the boring, but fun, normal, but extraordinary, life she has built with her family. Her heart aches with joy when she sees the interactions between Elliot and Penelope—it’s like they were made for each other, to be lifelong best friends. Her heart aches with joy when she sees how Ariana and Isabelle have become amazing mini moms to the two youngest. And her heart aches with joy, as she sits peacefully outside in her backyard, with Elliot smiling and waving at her through the window. Six years ago, after perhaps the most traumatic experience of her life, she never could have imagined she’d have such irrevocable hope.
By the time Nicole went into labor with Elliot, she was just past the thirty-nine-week mark. Even though this was her third pregnancy, this was the first time her water broke on its own. As she made her way to the hospital, she had a good feeling—This, she thought, will be my smoothest delivery yet. But, as her contractions continued, they became increasingly painful, and she felt sharp pains jutting up her back. At the hospital, she elected to do a water birth, because she was told it would help facilitate the delivery process. As she sat in the lukewarm pool of water, her dilation wasn’t progressing as it was supposed to, and her labor had stalled. The midwife tried a couple different maneuvers, but she soon realized that Elliot was in a face-up position, his shoulders flailed out, and he was stuck.
A sense of urgency filled the room as the nurses realized that Elliot soon would not be able to breathe. At this point, there was a shift change, so both day nurses and night nurses flooded around Nicole, trying to drain the water as fast as they could. As they lifted Nicole out of the tub and moved her to the bed, they kept repeating, “Listen very carefully—do exactly as we say.” Nicole was absolutely terrified, and she had no idea what was going on. How could things have turned so wrong so quickly? As Nicole was transported across the room, the whole world became blurred and fuzzy, as if she was blacking out. She felt a peculiar sensation where, if she didn’t acknowledge what was happening, it wasn’t actually happening.
When Nicole was finally placed on the bed, the nurses moved her knees up to her shoulders, starting compressions. Nicole felt helpless and out of control, like her mind was completely disconnected from the rest of her body. Elliot was delivered five minutes after Nicole was taken out of the water tub, and he came out entirely blue in complexion and lifeless, with Apgar scores of 0, 0, 0, and then finally 1. Nicole will never forget the look of panic set across everyone’s faces. There was a suffocating silence suffused around the room, only broken by the sound of footsteps splattering across the water-covered floor as Elliot was taken to the other side of the room. Elliot was intubated, and it took thirteen minutes for him to be resuscitated.
The entire time, none of the nurses looked at Nicole—they were visibly upset, but they didn’t know what to say. This was Nicole’s husband’s first biological child, and, because he was tall, he could see what the providers were doing to Elliot as he was being resuscitated. Nicole will never forget the moment her husband, who she had always known as strong and fearless, looked at her with the color completely drained from his face. With his lips quivering, he asked in broken syllables, “Is this what’s supposed to happen?”
Nicole saw the nurses doing chest compressions, writing with Sharpies on their arms, because there wasn’t enough time to get to the computer or find paper. They yelled out foreign numbers at each other. Nicole looked at her husband’s pale face and answered, “No, this isn’t what’s supposed to happen at all.”
As Elliot was being resuscitated and breathing on a ventilator, a doctor, and nurses Nicole had never seen before, started pouring into the room, running different tests and examining Elliot’s reflexes. In a major turn of events, Elliot slowly started breathing on his own, so, after fifty-nine minutes, he was extubated. Nicole heard people in the background saying, “Let’s extubate him. He’s breathing over the vent.” She remembers thinking, “Wait, when did they even put him on a ventilator? What is going on?”
As the doctors held Elliot up, they were all teary-eyed, because the death they had started to expect never came. In that moment, Nicole felt a brief glimmer of hope—her Elliot was inexplicably resilient.
Shortly after, Elliot was taken to the “special care unit,” waiting to be transferred to a hospital with a real NICU. Nothing about this day was easy, and even the weather didn’t cooperate. Because of lightning and pouring rain, Elliot was not able to be airlifted, so an ambulance came to transport him instead. Before the ambulance took him, Nicole was finally able to see Elliot in the special care unit, where she was handed papers about hypothermic cooling. As she looked at her baby boy, she noticed he was completely naked, screaming and shivering, because he clearly wanted to be warm. It broke her heart to not be able to provide Elliot with more comfort as she held him for the first time. Even though she just wanted to bundle him up tightly in a blanket, she was told it was all part of the necessary process of passive cooling.
Just as quickly as Elliot was put into her arms, he was taken away. About ten minutes later, the NICU team came into the room to put Elliot on a large gurney that Nicole likens to a “rocket ship” when she explains it to her other children. It was very late, so Nicole and her husband decided to sleep the night before following Elliot to the new hospital.
The next morning, after Nicole was discharged, she first went home to explain to her older daughters what had happened to the best of her ability. When she saw her girls, Nicole blurted out, “Your brother died, but they brought him back to life.” After that, she instantly thought, Did I really just say that out loud? In hindsight, maybe she shouldn’t have phrased it like that, but it was the first time Nicole truly processed all the trauma of the day before. For those minutes before Elliot was resuscitated, he was basically dead—he had no heartbeat, no cry, no color to his complexion, nothing. Once she really took in the gravity of what had just occurred, Nicole’s thoughts immediately shifted to, “I need to get to the hospital now.”
When she and her husband arrived at the hospital and saw Elliot being cooled, Nicole noticed the sheer number of machines, wires, and beeping sounds. The providers tried to explain what everything was for, but Nicole was so overwhelmed. She just wanted to know the bottom-line: Would Elliot be okay?
Unfortunately, at that point, they really didn’t have an answer for her, and no one had explicitly put a name to what had happened in the first place: shoulder dystocia, which resulted in HIE. As Nicole sat in the NICU, she searched the only concrete term she really remembered seeing, which was “newborn brain cooling.” She found a group on Facebook specific to brain cooling in newborns, and, after posting about her experience, the group members told her to join Hope for HIE. Once Nicole began learning about HIE online, she realized that what she was reading resonated with her experience. Nicole went to the nurses and asked if Elliot had HIE, and they confirmed that HIE is exactly what had happened.
Nicole felt frustrated that the doctors had known this all along, but it was she who had to bring the term to them first. When she asked when they were planning on telling her, they said that they usually waited until after the MRI to tell parents. Nicole would emphasize to physicians the importance of being as up front with NICU parents as possible, for, in a situation that is already stressful to begin with, not having clarity only fuels that stress. When Nicole first started scrolling through the New to HIE page, she remembers feeling so sad, wondering, Will this be us? Where are we? How did this even happen? It wasn’t supposed to be like this. But shortly after sharing her story with the group, she received such an unbelievable influx of support. She realized that, no matter what happened, she had a community of people rallying behind her who understood her lived experience.
While Elliot was cooling, he had a few seizures, and it was terrifying for Nicole to discover that something that presented as mere hiccups could actually be far more serious. The doctors put him on phenobarbital and again gave Nicole the whole “wait and see” spiel—seizures sometimes only last during the hypothermic cooling process, but they could also be an indicator of epilepsy. In addition, Elliot was feisty and stubborn, and he kept shivering during cooling in an attempt to get his body temperature back up. Thus, he had to be more and more sedated, and Nicole just prayed that he wake back up during rewarming.
Despite all the worst-case scenarios that played over in Nicole’s head, Elliot responded wonderfully once he was pulled out of cooling. He began crying after all those days of eerie silence, he wasn’t on any machines except for the NG-tube, and Nicole and her husband were finally able to really hold and cuddle with him. Because he was so big, Elliot was the snuggliest baby ever.
In addition, before Elliot went to receive his MRI, Nicole was told by a well-intentioned nurse practitioner that the MRI wouldn’t be able to fully capture what Elliot’s future would look like. Infants with a completely clear MRI could have “devastating” long-term effects, they could have a devastating MRI but no long-term effects, or they could fall somewhere in the middle. So, when the neurologist sat Nicole and her husband down to tell them that Elliot’s MRI was completely clear, she felt like she couldn’t breathe…all she could hear were the nurse’s words: “A completely clear MRI could indicate devastating long-term effects.” The neurologist quickly saw the terror in Nicole’s face and reassured her that this was good news. He walked Nicole through all the amazing progress Elliot was already making—he was crying, his reflexes worked as they were supposed to, he immediately wanted to nurse, he was already taking a bottle, and he was gaining weight. By taking the time to, not only tell Nicole it would be okay, but show Nicole it would be okay, the neurologist helped save Nicole’s sanity that day.
Elliot was discharged from the hospital eight days after he was born. The prospect of having to wait and see was daunting, and Nicole was constantly on guard, watching for any strange movements indicative of seizures. Through all of her worries, Elliot’s pediatrician never judged Nicole for being scared. Instead, she took the time to answer all of Nicole’s questions and watch all the videos Nicole sent her of Elliot’s movements. Fortunately, Elliot has not yet had more seizures since his NICU days. He did have some speech and language issues, and his fine motor skills are on the lower range of normal. That is not necessarily due to HIE, but perhaps just part of who he is. Nicole knows that many parents of HIE children with milder outcomes have left the Hope for HIE groups because they feel imposter syndrome. However, she comes back to the Parent Support forum occasionally to offer support to others in the community, for it can be scary only seeing the severe outcomes. Nicole hopes to show parents that HIE really does not have a single look, nor is the journey only filled with sadness.
Now, Elliot is an analytical, vibrant boy. He’s not very outdoorsy (neither is Mom), but he loves math and numbers, and he has a desire to learn everything he can. Currently, his favorite thing to do is to build with Snap Circuits. He and his little sister, Penelope, are both homeschooled by Nicole. All in all, he is just a joy, and he perfectly fits in with the rest of the kids. He knows a little bit about what happened to him at birth, for, each year on his birthday, Nicole has a tradition where she takes a photo of him, holding a frame with a photo of him in the same frame-holding position on all of his previous birthdays. The first photo inside all of the concentric frames is an image of him in the NICU. Birthdays of HIE children are often bittersweet for many parents, not only bringing feelings of joy, but stirring up memories of past trauma. Thus, Nicole would tell other parents to create their own special birthday traditions that help them hold onto hope and remember the progress that has been made, no matter how seemingly small that progress may be.
Even now, Nicole sometimes finds herself holding her breath, waiting for the other shoe to drop. When she thinks of Elliot’s future and how he could be forty-five years old and married with his own children, she is still sometimes haunted by the question, “But what if something happens?” Yet, she has learned to find hope in the journey. For Nicole, hope means staying involved in the HIE community to help parents who are going through similar struggles, for so many others have helped her along the way.
For instance, after Elliot, Nicole struggled with PTSD and depression, and she didn’t think she was in the right place mentally to have another child. When she unexpectedly became pregnant with Penelope, Nicole remained in a state of quasi-denial for a long time, thinking that, maybe, if she didn’t talk about the pregnancy, it wasn’t real. She couldn’t bear to think about potential names or attempt to connect with the baby growing inside of her. She thought that, if something terrible happened, it wouldn’t be so hard to deal with a loss if there wasn’t a mother-child bond to begin with.
Coincidentally, Nicole happened to find out about the pregnancy only a few weeks before the Hope for HIE Mom’s Retreat, so she went on the trip emotionally in shambles. Nicole volunteered to drive three other moms to where the retreat was being held in Michigan. During the car ride, it was evident that Nicole looked a little sick. When the fellow HIE moms asked if she was okay, Nicole responded, “I’m pregnant, but I just don’t want to talk about it.” Their reactions were truly amazing, and more than Nicole could have ever asked for. They simply said, “Well, then we don’t have to talk about it.” They didn’t ask Nicole why she wasn’t excited or get offended that she didn’t want to open up to them…they simply understood and held space for her to feel her feelings. It was so refreshing for Nicole to be around people without the need to explain herself or apologize for her actions.
Luckily, Penelope was born, without any hiccups, via a planned C-section. When Nicole saw Penelope for the first time, the first thing she said was “Didn’t I give birth to this baby already?” Penelope’s resemblance to Elliot was striking, and, to this day, they are best buddies. Witnessing how smoothly the C-section with Penelope went, Nicole felt an immense amount of guilt for not pushing hard enough for a C-section with Elliot. When she first held Penelope and cried those happy tears, there was still that guilt about all those months spent avoiding bonding with her daughter. Yet, through that guilt, Nicole reminded herself to practice self-compassion, for a) there was no way she could have ever predicted the HIE event, and b) her response to a post-HIE pregnancy was totally understandable, given all the past birth trauma she had endured. Instead of remaining stuck in the past and mulling over what she could have done differently, Nicole tries as best she can to remain grounded in the present. Her children are happy, healthy, and loved dearly, and that is all that matters.
Nicole has learned so much, and she is continuing to learn more each day. She learned that the NICU isn’t just a place for tiny babies, that making it past the boundary of preterm doesn’t automatically mean you’re in the clear. Before, she had this romanticized notion of labor and delivery, thinking that giving birth was just what you did and that it was easy. But now she realizes that birth complications, like HIE, are far more prevalent than it may appear. Most of all, she has learned that, even when things don’t go as planned, there can still be beauty on this new, unexpected path.
With Elliot, Nicole takes nothing for granted, and she appreciates not just his milestones, but also his inchstones. At his six-year pediatrician’s appointment, Elliot decided to have an attitude, complaining about having to be there. The pediatrician asked Nicole, “Do you ever just find joy in the fact that he is able to whine about wanting to go home and having better things to do?” Nicole doesn’t even have to think twice about her answer—it’s always absolutely. The first time Elliot does anything that she thought he might never be able to do, she will cry tears of joy. So, of course, it’s not necessarily fun when Elliot is misbehaving. But, in an unexpected sense, she also feels joy—joy that her resilient boy is able to be a little kid, with his cuteness and curiosity punctuated by the occasional tantrums.
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