I don't have the answers to that because I have never seen it from that side. So I had to ask the heart parents I know and here are their answers.
Going to bed every night wondering if your child is going to wake up the next morning. Other than that... hmmmm it's all gravy! ... Remember laughter is the best medicine.
The hardest part for me right now that Bianca is doing good is seeing other heart babies and heart parents and other heart adults, hurt...it breaks my heart when my CHD family is hurting.
Never knowing what's around the corner
Worrying about her future and how her health is gonna be when she gets older.
I agree with both of them.
I often check Legend to make sure he's breathing. Also everytime i see a baby doing bad or pass and see as of right now legends doing good it makes me feel a little guilty. I feel like if i put a post about him im bragging. But the main thing is not knowing. He still has 2 more surgerys and the ones coming up in a few months and you never know afterwards just hope all goes smoothly
The uncertainty, for sure.....not knowing what the future holds.
To be honest with you.... The hardest thing for me is treating Lilli like a normal little girl. Letting her climb and fall, letting her run and play.
The constant fear and anxiety - that pretty much means everything! Sorry, probably not the answer you were looking for ;)
I worry sooo much about Binaca's future and what God has planned for her and her lil heart! I agree with everyone! And if I haven't said it, we are so glad and blessed to have a great supportive CHD family!
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