April is HIE Awareness Month. HIE refers to lack of oxygen in the brain, in the case of my daughter Kaia it occurred at birth. I remember spiraling in those early days looking for stories and families that understood. Hope for HIE became such a source of comfort and community. All proceeds from this fundraiser will benefit Hope for HIE which provides support, advocacy, and research for those affected by HIE.
Kaia was born 8/25 at 2:57am. Instead of putting her on my chest, they took her away to "examine her quickly.” My first memory of my daughter was them rushing her away, the deafening silence of her not crying, the codes being called on the loudspeakers, and the doctors rushing in. It took her 5 min before she took her first breathe with help. The doctors rushed her out to the NICU to stabilize her. The doctors sat down to explain what happened and the steps forward, but I don’t remember hearing anything other than a silent room missing the cry of a newborn baby. It was the quietest moments in my life. After 6 hours when Kaia was stable, we got to meet her. Kaia was on a ventilator, EEG monitor, and a hypothermia cooling pad with one-on-one nurse to allow 72 hours for her brain to recover from the lack of oxygen (HIE). Our time in the NICU was filled with so much uncertainty and all the medical talk was so overwhelming. We weren’t able to hold Kaia for 5 days. It went against every instinct in my body to not pick her up. I had to constantly remind myself the cooling pad was helping her as every fiber of my body was screaming to hold her and to soothe her. Once off the cooling pad after 5 days we could hold her for the first time. Kaia CRUSHED things and got out of the hospital in weeks instead of possible months. My Philly girl, in her rocky "gloves" fighting for her life harder than she ever should have had to. The line that resonated with us the most was when our CHOP neurologist said,” Go home and just love Kaia, she will show you what she can and will do.” And god has she shown us over the past three years and taught us so much about resilience, hope and strength. Kaia is a true ray of light and miracle. HIE is a part of our story but will never define what Kaia can and will do.
Please join us in supporting Kaia and others affected by HIE. Every donation means the world to us and makes a difference. Thank you to our people for always sending such love and support for the past three years.
