Meet Aurora
AURORA’S STORY
Aurora is our second child; we had no complications with our first pregnancy which would be Xander, our 5-year-old. We went into our 20-week anatomy scan expecting to see a healthy baby and find out if our son was getting a baby brother or a baby sister as anyone would expect during this scan. We got the exciting news that we were welcoming a baby girl into our family! However, that excitement quickly changed to worry when the ultrasound tech stepped out of the room to consult with our OB. It was then my husband, Dylan, and I knew something wasn’t right. The ultrasound tech couldn’t get ahold of an OB to speak with us that night and did her best to try and keep our spirits up before letting us go for the evening. She said that we would receive a call if we needed another scan. Our hearts sank because we knew that something was wrong and that this was not typical of a healthy pregnancy. We then got referred to an MFM and a cardiologist to get a fetal echo done. When we sat down to review the fetal echo with the doctor, this is when we first heard the term CDH. She did her best to explain CDH and provide us with what little information she had, but we would need to wait until the following week to receive the official CDH diagnosis from our MFM. We were scared and unsure of what the future held for our family and our sweet baby girl.
After receiving less than encouraging numbers and experiencing a lack of confidence from the surgeon at our home hospital, we knew that we needed a second opinion. From there, we made the decision to seek care from Dr. Kays at JHACH. This meant I would relocate 2.5 hours from home while Dylan stayed home with our son, Xander, to keep his routine as normal as possible. We are forever grateful that my mother-in-law and my parents were able to help and support us through this time. My parents moved into their RV and relocated from Iowa to live/camp near our home to help with Xander, while my mother-in-law stayed with me at the Ronald McDonald House. Xander was able to finish the school year and visit his sister on the weekends. Dylan was able to maintain a semi-normal work schedule by working in the office a couple of times a week and remotely from St. Petersburg while spending time with Aurora.
Aurora was born March 13, 2023, and came out much sicker than we expected, but we already knew she was going to be a fighter! At 6 hours old, she was put on ECMO and at one day old she had her repair surgery. Aurora remained on ECMO for 14 days. Once off ECMO Aurora was doing great! She was weaning off her vent like a champ, until we hit a slight setback when she got an infection. This caused her to go back up on support from the vent and meant she needed to start over the weaning process once we got her infection under control. She was finally extubated two days before she turned a month old. We were finally able to hold our baby girl and hear her after 30 long days! Aurora weaned down on CPAP quickly, but our next big hurdle came when we started to work on feeding. After not being able to try and eat for over a month and having reflux eating via breast or bottle was a real struggle for Aurora. We decided to opt for a Nissen G-tube surgery to help Aurora grow and thrive. After 107 days inpatient in the CDH ICU, Aurora was finally able to be discharged with a G-tube and on low-flow oxygen!
Dylan and I stayed in St. Petersburg at RMH for an extra week until her discharge clinic appointment, and then we were able to welcome Aurora into her home with her puppy, Minnie, and her big brother, Xander.
Since coming home Aurora has been truly thriving. She is absolutely smitten with her big brother, and he loves her just as much. Aurora has been slowly working on eating more via bottle and cutting down on her G-tube feeds. She is now 6 months old and the happiest little girl who loves talking, rolling, and always being the center of attention.
We are so grateful for the generous gift from the Fore Hadley Foundation. The many miles put on our vehicles and the cost of gas really added up in the four months we were inpatient. Their gift was able to help relieve some of the financial stress of the weekly back and forth travel of Dylan and Xander so that we were still able to spend our weekends together as a family.
⁃ as told by Chelsea Peters aka “Mom”
About the Fore Hadley Angels in the NICU Fund
Support and proceeds for the Fore Hadley Angels in the NICU Fund will go towards assisting current and future families like Alexandria’s, by providing financial contributions to assist families with the costs associated with extended, long distance travel and living arrangements. Costs that are often a must to ensure the proper specialty care for CDH babies.