At 20 weeks pregnant during my anatomy scan it was seen that her left sided structures were small but they couldn’t really tell what was going on so referred us to cardiology. 

A few weeks later we learned that Remi had a hypoplastic aortic arch with near interruption, small left sided structures, and a large VSD. Our cardiac team at Methodist Children’s in San Antonio has been amazing every step of the way. 

Remi was born on 3/3/25 at 8lb 5oz, a bright pink and feisty little one requiring no oxygen and thriving! She was immediately given a line in her umbilical cord and started on prostaglandins to keep her PDA open and blood flow good until her surgery. 

At just 3 days old on 3/6/25 our tiny little one went back for an 8 hour open heart surgery. They were able to successfully repair her aortic arch but were unable to close her VSD so they placed a band on her pulmonary artery to help manage pressures to her lungs. 

Remi spent the first month of her life in the hospital with many ups and downs including being re-intubated, on CPAP multiple times, paralyzed right diaphragm that miraculously healed itself, and not being able to eat anything by mouth until she was 3 weeks old. We were discharged home on her 1 month birthday and she was thriving until one day she stopped gaining weight and started projectile vomiting any time she would cry. 

Her follow up echo revealed that she was in the 20% of babies that have a reaction to the patch on her arch which caused the patch to shrivel and her arch to narrow again in one section. She was immediately scheduled for a cath where they placed a balloon in her arch to open it back up. 

Thankfully that was successful and Remi is gaining weight again and up to 11lbs! Remi is scheduled for a heart cath again on August 6th and then will undergo her 2nd open heart surgery to take off the PA band and close her VSD. Her left ventricle is still struggling from the narrowing again and if her function doesn’t improve then her surgery date might be move up sooner. 

Remi is such a strong little girl and I am constantly in awe at how strong she is and for all that she has gone through in just the first 3 months of her life! 

Because of Remi’s appointments and upcoming surgeries, Tiffany (Remi’s mom) has decided to give up her full time job to stay home with Remi and keep her as healthy as possible. Due to this there is added financial strain with just one income to support our family of 6. 

Any help is greatly appreciated!

Here’s how you can help: