Hi Catherine. So much of what you said reminded me of myself and my son Brayden, who is 5 1/2 months old and has SWCAH.
He too was severely dehydrated, poor weight gain, very sleepy, had a heckuva time getting him to nurse...he was just too weak I guess. Thank the Lord that the results of his newborn screening came back when they did. I got a call at about 8:00 PM one night telling me to bring Brayden to the hospital for some bloodwork because his test had came back showing something. We took him for the bloodwork, got home, and as soon as we came in the door his Pediatrician called telling us to get him to the ER, ASAP. He was rushed by ambulance from that hospital to another hospital an hour away, a hospital that was more equipped to handle his problems. His ped. told me that night that if the screening tests hadnt came back when they did, my baby would’ve been gone by morning. God was watching over him, and still is.
As for the salt solution...ditto! I’ve had to try lots of different ways of getting that nasty stuff into him. Right now, we’re filling up a syringe and sort’ve "shooting" it into the back of his mouth so he has to swallow it. But in the beginning, I would mix it with some white grape juice and he would drink it from a bottle nipple. He decided that he wasn’t gonna go for that anymore...so maybe the syringe will work for a while!
Anyway,I’m glad you found this place, and I’m glad I did too. It’s a blessing to me to know I’m not alone in this.