Noa’s Story
We found out at our 20 week ultrasound that we were having a baby girl, and that our sweet one would have a long, hard journey ahead of her that would entail multiple high-risk and across-the-country open heart surgeries. That was just the beginning of the whiplash journey our sweet girl's life took us on.
Noa Louise was born May 26th, 2022 and was not stable enough to bring home. She was beautiful and whisked away within 30 seconds. The next 29 days of her life were spent on the 3rd floor of the University of Iowa Stead Family Children’s Hospital and were riddled with the highest stress I've ever had to face in my life. She fought for her life, we fought for her life... and she left us all too soon. She was pudgy like her brother and so soft featured like her sister; unmistakably belonging to our family.
Noa was born with Tetralogy of Fallot with MAPCAS and a hole in her heart. Her heart was also on the opposite side of her chest. She did not have her pulmonary arteries. We were given the hope that her body would grow little veins to support blood flow from her heart to her lungs and that there was a surgeon who could sew those little veins together to make her new arteries. She was supposed to have been born stable enough to make it to him, but that was not the case.
Since her passing, our lives have turned upside down. We’ve been tossed into an entire new world of living with our feet on the ground and our hearts and eyes on the sky above.
We have felt every range of emotion. We’ve revisited the hospital and left our complaints. We’ve battled anger with them and ourselves. We’ve lost sleep over the what-if’s and if-only’s. We’ve grieved beloved relationships with people who just couldn't hold the space for our heartache, and we’ve found ourselves in a circle of new faces who rushed in to help. We've been so broken and so thankful all at the same time. We have learned to give a new level of grace and speak truth boldly.
We have a new mantra in our family: "We can do hard things", because Noa has shown us how to fight, live courageously, and ultimately conquer. She has won, and we have hope through Jesus Christ that Noa is just up ahead and that someday we will all be together again - and that we won't ever have to say goodbye again.
If I had some practical advice for other families going through this, I would say that for the first year following your child's death, take an imaginary trash can with you wherever you go and toss all the negativity right in. For example, "God replaces what he takes away" - trash it and any other comment that breaks your heart or infuriates you. Protect your healing by only putting yourself in safe spaces. I learned the hard way so many times that I just couldn't be around unsensitive or dismissive people. Mom dates and church services that seemed to force me into being "happy" just made me hurt even more. Avoiding painful and triggering places kept me from backsliding and kept me on the trajectory toward healing. I didn't avoid these things forever, but I needed time. Get after your healing. Counseling, attending grief retreats, and finding a mentor have all helped me so much. I can't tell you how encouraged I have been by watching others who have survived this kind of tragedy living their lives decades after their loss. Talk to them, ask them how they kept walking. Lastly, speaking Noa's name and sharing my story has given strength to my heart.
I'm so appreciative of this organization that brings light to dark places and helps grieving families find their feet and voices. Thank you for educating others on how to love the broken, to not run away, but to rush in.
We're so grateful to you!
-Aubrey
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