Camie Rose Weber (2022-2022) Obituary and Memorial

Life story

Camie was born during a late winter storm at the end of March 2022. After a routine pregnancy and uncomplicated early labor, things suddenly and rapidly took a turn for the worse. During the labor and delivery process Camie's umbilical cord was compressed, cutting off the blood and oxygen supply to her brain. Camie was unresponsive and the NICU team was present to immediately begin life saving measures. She was ventilated, hooked up to IVs, and eventually was stabilized. Tests were immediately run and it was quickly discovered that the cord compression lead to an injury to her brain, known as Hypoxic Ischemic Encephalopathy. Immediately following delivery the extent and impact of Camie's injury was unknown, but it was quickly determined that she needed a higher level of care and was transferred to the University of Iowa Hospitals and Clinics NICU. Once the NICU team arrived at the hospital, Camie began therapeutic hypothermia treatment. This treatment cooled her body to about 92-93 degrees to help protect the brain by preventing any further damage. Camie remained in this cooled state for 72 hours in Iowa City.

During the initial 72 hours, Camie remained on the ventilator, had 24/7 video EEG, had daily xrays, bloodwork, and variety of tests, had multiple IVs to administer medications as needed, and required catheterization off and on. After 72 hours an MRI was done to determine where Camie's injury occurred, what the extent of her injury was, and what the outcomes for Camie might be. The results of the MRI indicated that Camie's injury occurred at her basal ganglia, which was described to us as the communication center between the body and brain, and that her injury was severe. Her neurological team explained that they often see impacts to hearing, vision, gross motor development, and that there was a high potential for secondary diagnoses throughout Camie's life, like cerebral palsy. We were overwhelmed, but grateful that Camie was still with us and began to think about how this would change our lives and what things we needed to start working on.

The week following Camie's MRI she remained on the ventilator and had IVs for medication and nutrition, but otherwise her body was functioning well. However, in those days Camie was not showing the progress that her team of doctor's expected as certain medications and supports weaned out of her system. At the end of the week, just one week after Camie was born, her lead doctor sat down with us and shared that she was concerned that Camie's injury was more significant that her team initially thought and that we needed to make decisions about what we wanted her life to look like.

The following conversations we had were conversations no parents should have to endure. We made the decision that we did not want Camie to live a life hooked up to machines in the hospital and signed a DNR. Over the next week of Camie's time in the hospital all of our immediate family had the opportunity to come and meet Camie. We had the best day when Camie's older sister Hallee finally got to come and meet her little sister, but we were so terrified it would be the last time she saw her. Thankfully it was not the last time they got to be together.

Camie's vent was removed 2.5 weeks after she was born and we spent the next 3 days in the hospital coordinating hospice care at home, learning how to manage Camie's tube feeds and care, learning how to administer her seizure medication, and wrapping our heads around being parents to a medically complex child.

3 weeks after Camie was admitted to the NICU in Iowa City, she was discharged and we brought her home! We were blessed with 5 beautifully stressful weeks at home with Camie. We quickly got into a routine, got more comfortable with her care, and started connecting with evaluations, therapies, and local doctors to get the necessary supports in place. We made as many memories as we could and held and snuggled her as much as possible. She was so cherished by everyone in our house, even the dogs!

About 4 weeks after we brought Camie home she had follow up appointments with all of her doctors in Iowa City. During those appointments her Neurologist described Camie as a warrior, and everyone was impressed and surprised with how well she was doing. We had no idea that just 3 days later Camie would start to decline and our time with her would come to an unexpected end. The week after Camie's appointments she started to show signs of pain or discomfort and requested a visit from our hospice nurse. There was no obvious sign of something being wrong, like a fever, but her heart rate was very high. After consulting with the hospice care doctor who was managing Camie's case, we were instruction to begin to give her comfort meds. These were pain meds we were given when Camie was discharged from the hospital to help provide her comfort when she approached the end of her life. With one sentence our lives were shattered.

We spent the rest of that afternoon snuggling Camie, pouring all of our love into her, and tried to stick to our evening routine with Hallee. Hallee hugged her little sister for the last time before going to bed that night, and we spent the rest of Camie's time holding her, singing to her, and cherishing every minute. Camie passed away in our arms at 10:30 on May 25th, 2022, just 5 days before she would have been 2 months old.

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