u/Emotional-Treat-4410

Hey there, my daughter has gotten released from the hospital on Monday at 8 months old. She was diagnosed with HLHS and has gotten both her Norwood at 3 days old and Glenn at 4 months old. She has a GJ tube. Can someone with a similar experience please given me an idea of what her next couple of years will look like and also maybe what her adult life would look like? I understand she will always have doctor’s appointments and heart and blood pressure medication and I know that everyone’s story is different. But right now, it takes both of us to give her a bath because she wants to pull at her tubes. And I’m feeling like it will be a struggle for a while. Thank you for anything to add to all of this.