Our son Michael was diagnosed with lobar HPE about few days after he was born. I delivered at 26wks. We had never heard of this disorder and we were completely caught off guard. Michael spent the first 3months of his life in the NICU. He was born 09/08/07 and we didn't get to bring him home until 12/03/07. At birth he weighed only 2lbs and 3oz. Today Michael is about 16lbs and is doing really good. We have had numerous hospital admissions and there were a few times when we didn't know if we were gonna make it out. Michael came home with an OG tube that his dad and I had to put down his throat and into his stomach. It was fine at first but as he got older he became more aware of it and started to pull it out often plus the tape was eating his face up. So Jan 08, 2008 we had a gastric button placed and he had a Nissen procedure also to prevent reflux. Surgery went fine but Michael had a hard time coming off the ventilator so we spent almost two weeks in the hospital. Michael has diabetes insipidus, bronchial pulmonary displasia, bilateral cleft lip and palate (his lip has been repaired and the palate will be repaired in Oct). He has had trouble sleeping since he came home. We've tried numerous medications but we've found that Melatonin works great for him. He still wakes up during the night but he will sleep for 3-4hrs at a time (something he had never done before). I have taken a LOA from my job so that I can take care of him and try to keep him out of the hospital. It has not been easy taking care of him but all the hard work has been worth it. He is the cutest thing. Michael is now 9mos old. He can't sit up or anything but he does try to. We believe with his therapy and everyhing he will be able to. He doesn't take anything by mouth but he will be having a swallow study next month to see if we will be able to feed by mouth. We just love him to death. We look at it like just "a different kind of parenting". Just know that GOD makes no mistakes!