Aurelia’s Story

Site created on March 19, 2019

Welcome to my CaringBridge site. I am using it to keep family and friends updated in one place. My baby was diagnosed at 17 weeks with an omphalocele. This means that some of her abdominal organs are growing in a sac outside of her body rather than where they are supposed to be. Check back here to follow my journey and read updates. Thank you so much for your support!

Newest Update

Journal entry by Kaitlin Stevens

One year ago I was 17 weeks pregnant and excited/nervous for an early ultrasound to see my baby. I had taken a quad screen to test for defects and such and one level came back elevated by .01. I was told I had nothing to worry about. That they got false positives on those tests all the time. I was given the option of an early ultrasound if it would calm my nerves. I jumped at the chance because it meant I could also know what I was having a few weeks earlier than planned. I was at this ultrasound alone because I figured it’d be no big deal. My baby came up on the screen and there was what looked like a big floating balloon on it’s belly. Words started being thrown at me that I didn’t understand. They, including the ultrasound tech who shouldn’t have said anything, started talking about survival rates and genetic counseling. A doctor came in and said omphalocele. Somewhere in there they told me it was a girl. After the ultrasound they made me go chat with a genetic counselor. I was near tears and don’t even remember that conversation. It didn’t need to happen right then. When I was finally able to leave I walked out of that office and broke down. I was crying hysterically on the phone with my mom and maybe my sister. I went home and started googling. I immediately called children’s and got myself set up to switch care. I spent one of the worst weeks of my life waiting for genetic test results. I cancelled the gender reveal i had really been looking forward to. I tried to keep moving forward.

Today, one year later, I’m having a memorial gathering for my baby girl. I tried to be so positive throughout my pregnancy even with her diagnosis. There were so many success stories. I pushed so hard to get her the right care and consistent care and tried to make doctors take her seriously. Some of them never did. But some of them loved her so much. I tried. I never gave up and refused to let anyone else give up. But it wasn’t enough. 

I just want to celebrate her today. Most never met her, but she was special. I so appreciate the people who did come to meet her and just sit there in the hospital room with me. It was hard being there alone all the time. 

It’s supposed to be in the 40s today. A great day to celebrate Aurelia Brienne. She taught me so much. I had so many plans. She taught me you can’t plan everything out. She taught me life is short...waaay too short. She taught me about people...some will be there for you and some won’t. Sometimes the ones who won’t will surprise you, sometimes it’s exactly who you’d expect. She also taught me that there is great kindness that can come from complete strangers. She taught me so much more, but I’m going to lay down now and try to get a little more rest before celebrating her today. 

I don’t want to do this today. I don’t want to think about the last year. I may not be able to make a lot of small talk with people today. But no matter what, I wil appreciate everyone who shows up. 

Aurelia Brienne was braver and stronger and just straight up better at life than anyone I have ever met. She should have been able to keep on living it. 

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