Jessie Hill's passion for caregiving and advocacy started around 15 years ago when she worked as a Health Facility Administrator serving the geriatric population. In her professional career, Jessie gained a deep understanding of how the healthcare system works. She not only learned how to speak confidently with healthcare providers and how to work with families as they advocated for their loved ones, but also began to understand what families need and what paths were available for them to receive needed services.
When Jessie became the parent of a child with complex medical needs, the role reversal from healthcare professional to family member was a humbling experience for her. She had the benefit of her past professional experiences to build upon, but still struggled to find her voice at times.
Jessie' son, Cutler (age 6), was born at 26 weeks gestation. Jessie states: “All we knew before birth was that he had stopped growing typically. He was diagnosed with a severe Intrauterine Growth Restriction (IUGR). We also knew that he had a bilateral cleft lip and palate. We did not know if he would weigh enough to sustain life or if his brain had formed enough to sustain life. We watched his development closely, but when an ultrasound showed a loss of blood flow to him, we knew it was time to deliver. I had an emergency c-section at Methodist Hospital.” Due to his IUGR, Cutler was born the size of a 22-week baby. He was immediately intubated and placed on a ventilator by the Methodist/Riley Neonatal Intensive Care Unit (NICU) staff. Cutler stayed in the Methodist/Riley NICU for 40 days until he was transferred to the NICU at the Riley Children’s Hospital main campus. His total NICU stay was 7 months.
Jessie explained: “While Cutler’s primary diagnosis is subglottic stenosis of the upper airway, during his NICU stay, he ended up getting several pages of diagnoses. At 4 months old, he hit the minimum weight requirement for surgery, and we moved forward with many surgeries he needed, including: placing a trach and g-tube, repairing his bilateral cleft lip and palate, repairing a heart defect, and several corrective eye surgeries. We also discovered during this time that he had hearing loss and a brain condition called ventriculomegaly, although he was able to avoid surgical placement of a brain shunt.”
Jessie views her son’s NICU stay as a journey- both painful and beautiful. Despite her professional experience, Jessie feels that nothing could have prepared her for what NICU had in store: “Walking into NICU Ground Zero, still in the physical and emotional pain of recovering from my emergent c-section, I just remember everything being an overwhelming fog and daze. I can’t even recall most things that happened. I was just forced to respond to things and make decisions meant to keep both me and my child alive. It maybe even feels a bit robotic. My husband and I were forced to figure out: what do we do now? It’s reacting. It’s keeping your child alive one moment at a time. It’s survival.”
Jessie and her family spent over 200 days in the NICU making life-or-death decisions for Cutler on a daily, sometimes hourly or minute-by-minute, basis. She describes her early days in NICU as “overly emotional, desperate, and even angry;” however, she found that once she had been there long enough, the shock began to wear off, and she realized that the problems her son was facing were not things that could be solved overnight. She added, “Once you have support in place and begin to accept your new reality, you can then start piecing together the information and resources you need to move forward. My mantra changed from ‘survival only’ to ‘knowledge is power.’ I had no control over the things that were happening to my child, but I could control my own knowledge and how I was going to react. I started asking more questions. I started to learn how to work with the doctors and nurses, and I learned all that I could from them. I decided that I needed to gather all the knowledge that I could in order to prepare myself for continuing my son’s care at home when the time came.” Shifting her mindset helped Jessie to see that life would go on outside of the hospital, and that things in her family’s life could move forward-- even if they looked different than she expected or hoped they might.
Jessie describes the silver lining in Cutler’s NICU stay as the beauty in the community they formed there with medical providers, the NICU Nest team, and other NICU families. She explained, “NICU Ground Zero is survival mode, but it’s also looking back and being so thankful for the people and community that surround you, especially those with experience that can guide you, help you find resources, and tell you it’s going to be okay. You find a family in the NICU, and you need that support to get through the survival mode. Finding that community made all the difference for my child.”
Read more about Cutler’s story and how Jessie was able to bring her passion for family advocacy full circle in our May newsletter!
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Come visit with INF2F staff at the All-Community Medicaid Benefits & Outreach Fair on Saturday, April 29th from 1:30-4:30p at Broadway United Methodist Church, Indianapolis. For more information, call 317-924-4207 or email: ccpresourcefair@gmail.com.
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Join us May 21st for our annual fundraiser, Walking for Dreams. Donations from this event help to ensure that our services remain free for families. Walk with us in-person, virtually, or donate to our mission: https://www.inf2f.org/walking-for-dreams
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Save The Date!
Indiana Family to Family's annual Heart to Heart Conference will be held virtually on Thursday September 28, 2023. Be on the lookout for more information and registration details coming soon. We hope to see you there!
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