05/15/2007

Well, they discontinued Emery's nitric oxide today and promptly restarted it. He was on a measely 1 ppm of nitric and when they stopped it his oxygen requirements shot up, so they had to put it back on and go back up to 5 ppm. I guess it's back down to 1 ppm, but he's not satting as well as he was. They had even talked about going back up on his pressures on CPAP a bit and I didn't like hearing that. I know it's too early and I'm putting the cart before the horse, but Emery is behind in just about everything, from a corrected gestational age standpoint and not from a chronological age (yes, I know it's too early to worry about). The only thing he does good like all other little kids is get constipated. Developmentally he really hasn't even had a social smile yet. He smiles endlessly while sleeping or dozing, and if he's not in pain he will 'interact' and look you in the eye and get a pleasant look on his face, but otherwise if he's in pain he usually just cries out and half dozes and squirms and fusses and who wants to interact when they are miserable? I've just read so much about preemies with autistic characteristics that don't get treated early in life because people fail to intervene. Leave it to me to worry about that now. We still need to get the kid home. I hope that the reflux meds take care of some of that. Friday he has his repeat ultrasound to check and see if the kidney stone has passed, and next Wednesday we find out if his retinae have matured. If his retinae have matured and his eye disease continues to heal then we will be able to move a little quicker with the weaning of CPAP. He's still a very long way from home. I so miss him and want to be with him. I've discovered that if Emery has a good day, I have a good day. If Emery has a bad day, I have a bad day. I don't want my emotions to be dependent upon his 'good' or 'bad' days per se, becuase if that's the case then I'm in for a fairly miserable existence here over the several years, but it's so hard being away from your baby and knowing that he's hurting and sick. It's hard enough being a parent. Being the parent of a sick baby is just that much harder. Erik and I are going to see him tomorrow. He's big and pink and healthy-looking and we get bathe and hold tomorrow as long as they are not busy. Please still keep Emery in your prayers. Sometimes I don't have the energy to pray and so I rely on all of you to do it for me. It's bizarre. I almost feel like any time spent in prayer now is a waste unless it's pleading Emery's case. I know that to not be true, it's just the little tricks my mind plays on me. Don't forget to check out the new pics of Em to see how he's grown!