Introduction
On the 61st episode of the Empowering NICU Parents’ Podcast, we were honored to be joined by Edward Steinhauser. Edward and his wife Haley have endured an extraordinary journey of parenthood marked by immense love, resilience, and profound loss.
Edward and Haley, now residing in Long Beach, California, have faced numerous trials on their path to building a family. They are the proud parents to Cooper, and their daughter, Scotty. Cooper, was unexpectedly born prematurely at 25 and a half weeks several states away in Colorado. During his brief, but incredibly impactful life, he faced numerous medical battles with incredible strength.
In this episode, Edward candidly shares the emotional and physical challenges they have encountered from their journey through the world of IVF, the profound impact of pregnancy trauma, Cooper’s time in the NICU followed by his passing, and how their experiences have shaped their outlook on life and parenthood.
Edward opens up about Cooper’s life, the profound bond they formed, the impact he had on their family, and the emotional journey of navigating his courageous fight between two different NICUs while being over 1,000 miles away from home. He highlights the incredible individuals who helped create beautiful and unforgettable moments with him, especially during his final days.
Join us as Edward shares Cooper’s story—a testament to a little boy’s strength and the enduring love of his parents. This episode is a poignant reminder of the impact a brief life can have and the resilience of a family determined to keep their son’s memory alive. Stay tuned for an intimate and emotional conversation with Edward Steinhauser.
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Episode 61
Our Guest
Edward Steinhauser
Edward Steinhauser is the co-founder, and president of the Cooper Steinhauser Foundation and a middle school principal. After graduating from Boston College with a BA in History, he earned his Master of Arts in Curriculum and Instruction from California State University, Long Beach. Edward’s greatest joy is being a dad to Cooper (2) and Scotlynn (1), and husband to his wife, Haley.
The Cooper Steinhauser Foundation is a 501(c)(3) that supports families and NICU staff through parent care packages, direct funding to NICUs for medical needs and parent support, and resources for families so that they can navigate their NICU journey in a way that is supportive for them and their baby.
Journey to Parenthood
Edward Steinhauser, a middle school principal, and his wife Haley, have been together for 12 years. They currently reside in Long Beach, California. They are the parents of their son, Cooper, their daughter Scotty, and their dog Quincy. Despite being self-proclaimed planners, their journey to parenthood was fraught with challenges. They decided to start a family around the age of 28 but faced significant difficulties in their journey to parenthood. After enduring multiple rounds of IUI and IVF treatments, Haley experienced a heartbreaking miscarriage at nine weeks with her first pregnancy. After six years of perseverance, they were finally blessed with their son Cooper.
Edward spoke about the profound impact a previous miscarriage can have on subsequent pregnancies. He discussed the unfortunate reality that many people do not openly talk about their pregnancy losses or acknowledge the profound impact these losses can have. He emphasizes the importance of openly discussing these challenges to support others who may be going through similar experiences.
Cooper’s Delivery
In addition to enduring pregnancy trauma, Haley experienced additional complications during her pregnancy with Cooper. She encountered bleeding and a placental abruption, followed by a sudden onset of premature labor at 25 weeks gestation during a business trip in Denver. Cooper’s early arrival signaled the beginning of an intense and emotional NICU journey.
Edward shared the details of Cooper’s birth and his initial shock and awe at the number of medical professionals involved. The medical team warned Edward that Cooper would be placed in a plastic bag to prevent additional heat loss and to keep him warm due to his lack of body fat—a detail that Edward thought was odd, but highlights the fragility of his early arrival. Edward recounts their first moments of being able to hold Cooper, thanks to a nurse who advocated for them, and the importance of skin-to-skin contact. Holding Cooper was the most meaningful and cherished time for Edward and Haley. They took turns with morning and afternoon shifts, simply sitting and holding him, knowing the importance of skin-to-skin contact. It was one of the main ways Edward and Haley felt like they could contribute to Cooper’s health and his comfort.
The NICU Journey
As the NICU journey continued, they encountered more challenges, including Cooper’s need for surgery to address a perforated bowel. Edward discusses the emotional rollercoaster of receiving news about Cooper’s health and the difficulty of navigating life in the NICU. Edward can now reflect on the important role their dog Quincy provided by ensuring they took necessary and regular breaks from the hospital environment.
Cooper’s time in the NICU was a rollercoaster of emotions. At ten days old, a cranial ultrasound revealed that Cooper had significant brain bleeds. Despite this, the family remained hopeful, focusing on the daily milestones and cherishing the small victories. Edward shares the difficulty of hearing medical updates and the emotional toll it took on them individually and as a couple. Cooper underwent surgery for a perforated bowel, a procedure that led to complications and required additional surgeries. These experiences highlighted the severity of Cooper’s condition and the constant uncertainty they lived with.
The Steinhausers were fortunate to be able to stay near the hospital, making it their full-time job to be with Cooper. They created a routine, spending long hours by his side, participating in his care, and building a deep connection with their son. The NICU became their second home, filled with personal touches and mementos that made the sterile environment feel more welcoming.
As Cooper’s condition fluctuated, the Steinhausers experienced both hopeful and harrowing moments. Cooper’s condition unexpectedly declined as he developed significant seizures. This alarming development necessitated a transfer to a higher-level NICU where they were more equipped to handle more critical conditions. Edward recalls the urgency of this transfer, the emotional toll of seeing their son transported in an ambulance, and the daunting reality of navigating a new hospital environment. The level IV NICU provided more specialized care, but it also brought new fears and uncertainties.
As Cooper’s condition continued to decline, the medical team approached Edward and Haley with the difficult reality of their son’s prognosis. The discussions were heart-wrenching, as the doctors explained the extent of Cooper’s brain bleeds and the seizures that had become increasingly unmanageable. The team was compassionate yet candid, outlining the potential long-term outcomes and quality of life considerations. After many tearful conversations and seeking guidance from family, friends, and their priest, Edward and Haley made the excruciating decision to transition Cooper to palliative care.
Shifting to Palliative Care
Ensuring Cooper’s quality of life became Edward and Haley’s primary focus, and they created special memories that would last a lifetime. The transition to palliative care introduced Edward and Haley to an extraordinary team of healthcare professionals who provided unparalleled support and compassion. This dedicated palliative care team played a crucial role in helping them navigate this incredibly challenging time. From organizing special moments, such as creating molds of Cooper’s hands and feet, to facilitating a memorable outdoor picnic where Cooper could feel the warmth of the sun and be with his family, the team went above and beyond. They ensured that Cooper’s final days were filled with love and tenderness, creating an environment where Edward and Haley could focus on cherishing their time with their son. Their expertise, empathy, and unwavering support left a lasting impact on Edward and Haley, providing a sense of comfort and solace in the midst of their grief. The team’s efforts not only honored Cooper’s life but also gave his parents the strength to find moments of peace and beauty during such a heart-wrenching period. These moments, though bittersweet, are cherished memories that keep Cooper’s spirit alive in their hearts.
Cooper’s life and the profound impact he had on their family is a powerful reminder of the strength and love that can emerge even in the face of unimaginable challenges.
Scotlyn’s Pregnancy and Delivery
Haley’s pregnancy with Scotty was another challenging journey, layered with the trauma from their previous experiences. They navigated numerous markers of anxiety: passing the nine-week point of their previous miscarriage, the 18-week bleeding scare, and the critical 25-week milestone when Cooper was born. At 24 weeks, Haley experienced bleeding again, and she was put on bed rest until Scotty’s birth at 37 weeks. Despite these challenges, they remained hopeful and determined. Scotty’s arrival was a beacon of joy, symbolizing their resilience and hope amidst their grief.
Part II
Throughout their NICU journey with Cooper, Edward, and Haley gained a profound appreciation for the hardships that other families endured. Witnessing the struggles and resilience of those around them highlighted the immense challenges faced by NICU families. This deepened empathy and understanding fueled their desire to support others going through similar experiences. After Cooper’s death, they were inspired to turn their grief into a mission of hope, leading them to establish a foundation dedicated to helping NICU families who endure additional hardships.
In Part II, we will explore how they have transformed their grief into a mission of hope and support for others. After losing Cooper, they made a powerful decision to honor his memory by establishing a foundation dedicated to helping other families facing similar hardships. Through the Cooper Steinhauser Foundation, they provide vital resources, emotional support, and a sense of community for families navigating the challenging NICU experience. Edward and Haley will share the inspiring and heartfelt ways they keep Cooper’s memory alive, turning their pain into purpose. They will discuss the programs and initiatives their foundation supports, the impact it has had on other families, and the incredible stories of hope and resilience that have emerged from their efforts. We will also hear about the beautiful moments and special memories they continue to create in honor of Cooper, ensuring his legacy lives on in the most meaningful ways.
Join us next time to hear more about their incredible foundation, the lives they have touched, and the hope they continue to spread in memory of their beloved son. Thank you for listening, and we look forward to having you with us for Part II of this extraordinary journey. Until then, hold your loved ones close and cherish every moment.
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