Warrior Wednesday

Wren, 2mths old

HLHS with multiple VSDs

Wren was born 5/24/24 via emergency C section. We didn’t know about her HLHS diagnosis until our last ultrasound to check her growth at 37 weeks as it was missed on 3 ultrasounds prior. We were sent to the hospital that afternoon only to deliver her the very next morning where she was rushed to NICU. We got to spend very little time holding her after birth before being sent to the PICU at a different hospital. Wren was born weighing only 4Lbs 5oz. She needed a procedure called the Norwood but was too small to survive it. After being intubated due to rapid heart rates, low post ductal saturations and difficulty breathing, she was intubated and had a “Hybrid Norwood” on 5/29/24. This was not 100% successful as her heart was too small and unstable, so all that was able to be done at that time was placing restrictions in both PAs. She continued to be a rollercoaster after this. Unable to tolerate NG feeds due to poor circulation to her intestines and unable to keep up with oxygen demands. She was intubated again and went back to cath lab 6/17/24 where she then had her Left restrictor replaced with a smaller one, a stent placed in her PDA and a stent placed between her atria. After this, she would be stable for a short time, but then again would be unable to tolerate feeds and would get reintubated. After multiple intubations, and learning she had a milk protein allergy, along with supplemental medications to help with her heart failure, she is stable, growing and finally tolerating hypoallergenic formula through her NG. Although stable with her new “hybrid Norwood anatomy” they have decided to do the actual Norwood 8/12/24 with hopes of one day doing a biventricular repair vs the Fontan.