Hi First off congratulations on your son. I think when we get that devastating phonecall we are robbed of the joy of having a newborn. Know that your son will be ok. As a parent, the first year is the most difficult. When you should be full of joy at all your baby is learning, you are overwhelmed and in the back of your mind you are filled with worry. When Molly (my daughter) was first diagnosed we could not imagine what we could have done to deserve this, but very shortly afterwards we wondered what we could have done to deserve her.
My daughter Molly is now 9 and she is the most amazing yet typical little girl. She is in the 4th grade and is at the top of her class. She has an incredible sense of humor, is a complete know it all and an absolute pain in my butt — just like any other 9 year old.
When Molly was diagnosed her levels were 19 (she was diagnosed at 6 days and was breastfed)- she has what is called Classical PKU (the most severe form). Given Ace's levels, it seems like he will have a more mild form. As Breanna explained, the purpose of the formula is to provide all that Ace needs, minus the one thing his body cannot metabolize (phe).
Good luck with everything. Know that the first few months are overwhelming, but you will get through it. Feel free to send a message if you have any questions at any point. Give your wife a hug.