02/16/2007

Well we are back from our day with Emery. He's developed a new thing that is odd for him, which is spitting up. He never really had a problem with it before and now he's done it about 4 times this week, three in a row from just last night. His belly is soft and he doesn't seem to be in pain, and he is still digesting well and has good bowel sounds but of course it freaks me out. I think the worst, like "Oh great. It's probably NEC," but they're just monitoring him. At his last feeding he had no residual and hasn't thrown up at all, and they think that it might be because they have started potassium chloride now since he is on diuretics. Who knows? I held him again today for about 10 minutes and he urped a bit so they had to put him back in bed. We also found out from the doc today that the only thing we can do now is wait for new lung tissue to grow for Emery. He also might need to move to a jet ventilator. They had to go up on his PEEP a bit today but the good news his blood gases came back down in range for him and O2 requirements came back down to 45%. We had a good day with him. He had his eyes open several times and he's so aware. He's got a funny new thing, it's like he tries to focus and his eyes cross. We found out on Wednesday that he had stage 1 ROP (retinopathy of prematurity), which is a disease that develops in premature infant's eyes from the prolonged use of oxygen. Something about irregular blood vessels building up in the backs of their eyes. It can lead to blindness if not treated, but Emery has the smallest stage of it and it can resolve on its own. If not, they can do laser surgery. So we haven't made it out of the NICU unscathed. I feel like we haven't even gotten to the darkest part of this journey yet. There is no light at the end of the tunnel right now, it's odd sometimes not knowing what the outcome will be. It's a great lesson in life really. One thing I do know is that he is in very capable hands at the U of I. They are diligent with him, with all the babies. It's funny actually. The nurses who take care of him during the day chase the docs down and ask questions and the nurses at night pester the docs on at night about him. We just have to give it up to God but it is soooooooooo hard. I want him to be okay and home. Holding him was great and also weird. I mean, he's my kid but it takes two people to set him and adjust him in my arms, to make sure that his feeding tube is capped and his vent tubes are hooked to my shirt, to make sure he is warm and my arm is propped right and to make sure he doesn't aspirate or desaturate. Most moms just pick up their babies whenever they want. Wierd. Anyway, that's all I've got for today. Mandi is taking care of him tonight and she had a talk with him and they decided together that he was going to have a nice quiet night. Don't forget trivia night tomorrow night :) Actually, Erik and I are counting that as a night out. We miss the kids. Oh, and Erik and I made a CD for Emery today. The music therapist left us the CD recorder and some books, and yes.. Erik sang Grateful Dead songs to Emery. XXOO Sarah, Erik and Emery