Baby Luke Rogers medical bills

My son Luke Rogers was born 5 weeks early weighing only 4.6 lbs with a rare disease called VACTERL syndrome. Each letter stands for a part of the body that can be affected. Luke has 6 of the 7 letters. Alot of people probably never heard of or will ever meet anyone with this. It happens 1 in approximately 25,000 babies. Luke spent 47 days in NICU at Christ Hospital. Just 4 hours after he was born he had to go for his first major surgery. He had so many tubes and wiring connected to him so we were unable to hold him for 2 weeks for tseehe first time. Not knowing anything while I was pregnant was hard to deal with when he came into this world. 
He's had 4 majors surgeries so far with a few more to go and hes not even 1 years old yet.  Hes currently in the hospital now recovering from one of his surgeries. We are expected to be here for a week then continue care with home health care nurse. There are many specialist who work with Luke and along with therapy sessions 3 times a week.
So needless to say I can no longer work and haven't worked since the day he was born. Having a one income house on top of all Luke's medical bills is really taking a toll on us. My husband's job is slow right now so he's not working nearly as many hours as he did last year.
If everyone can please share our story of Baby Luke, we would appreciate it.