03/14/2007

Up and down on the roller coaster we ride. Well, today was a sort of scary day. Erik and I are up with Emery right now. We drove up tonight with the hopes of giving him a bath. When we got into the parking deck I grabbed my cell phone, and there was a voice mail, from the University of Iowa. I only heard something about vent changes and sedation, and of course when you round that corner you never quite know what to expect. We walked in and the nurse said "the bath is out. Holding is out. His oxygen requirements have been all over the place." Then she went to get the doctor who had left me the message in the first place. On the way up the NICU I was telling Erik that I was scared because I had had a dream last night that Emery had died. It was a horrible dream that woke me up out of a dead sleep. I felt like it was a bad omen. I guess what they're thinking is that Emery is having a pretty bad rebound from the steroids. They did start inhaled steroids today. His diagnosis is now severe BPD. They are tweaking the vent settings. He had a CO2 of 92 today, which he has never ever climbed that high, not even when he was extubated the first time, but after some tweaking it came down to 49 so now they are tweaking again as they feel they are doing too much work for him. I guess I'm just tired. Dr. George said it was necessary to keep Emery sedated and comfortable so that he doesn't fight the vent, that he needs to survive his chronic lung disease before we can really do any work with him neurodevelpmentally. He said that they have treated hundreds of babies like Emery, and this is a normal course that preemies with severe lung disease take, but it still scares the crap out of me. I mean, seriously, I watch babies, preemies as young and small as Emery, come and go daily, and I mean that literally. The hope is that new lung tissue can grow before the lung tissue he has now becomes injured from the vent and oxygen. It's kind of a race. There is a definite risk of death from BPD. He is at least acting like it is a steroid rebound, very similar to the last time. They started inhaled steroids and bronchodilators today. I hope they help keep the swelling down and help him out. He has seriously nasty thick secretions. aren't expanding and complying the way we like, but his chest x-ray shows that he's over-expanded.' What the heck does that mean? More surfactant for crying out loud? I could buy an Escalade for the amount of surfactant that is in my child right now. Erik says not to worry, that this is just Emery. I try not to, I really do, and maybe I wouldn't worry so much had I not had the dream that he died last night, I don't know. I feel like Emery got short-changed, that his life could have been so much better had I not failed him, and the hope and reality of more children really is so minimal. I just don't know if I could take the risk, and I don't know if I could put a child through this again. The staff here is wonderful, but the NICU is hell. There is no other word to describe it. I don't want the only parenting I do to be at a hospital bedside, and even though I know I'm not alone, that there are literally thousands of parents going through this, it doesn't make it any easier. Emery is really starting to love being held, and now we can't even do that. It seems sometimes like every time I pray for help for Emery he just gets worse. It is so frustrating. There was a little more talk of a trach tonight, which doesn't frighten me in the least. I just want him home. The doctor did say, though, that in terms of Emery's stay in the NICU, he does feel we've made it past the most critical stage and now we are trying to manage his lung disease. I hope and pray that it is manageable.