06/02/2007

Well, I don't have much to report but I didn't want everyone freaking out about no updates so I'll try to come up with something. Overall, Emery has tolerated going down on his CPAP pretty well. His pain management, though, is becoming a little bit more difficult. He's needing round-the-clock morphine and Tylenol now. Yesterday, out of a 24-hour period, he slept perhaps 4 hours total. Today he's so exhausted he's sleeping pretty soundly. He's pretty uncomfortable, but not always unhappy. He and I talked and laughed and played yesterday. He's gotten so strong that when he's lying on his tummy he can push himself up on his arms. Today, he nearly rolled himself over in bed. I did ask what would be the cause of emergent surgery and they said 'uncontrollable pain.' So, right now his pain is fairly controllable. I hate the thought of him in pain and him having to wait for surgery. Everyone likes to tell us how painful a kidney stone is. It's like rubbing salt in a wound. I'm already hurting for him and feeling pretty helpless to boot. There are times when I just want to step out of his room and scream and demand that they do something, that if it was their baby lying here like this things would be different, and then other times I look at him like right now and he's sleeping well and comfortable that I just have to let it go. It's the dark moments that I feel like Em's getting the short end of the stick, and that's not anyone's fault. I think it's impossible for some people to understand just how difficult it is to take a child away from the mother, or the fact that I have so little to do with his care, that he's here and I'm at home and I just feel so helpless. It's my job to care for and protect him and I can't really do that. It's tough! Consequently, I'm not depressed today or anything, I was just trying to explain what a mother actually feels with a sick baby. I want what's best for Emery, and sometimes I have to wonder if that means somehow getting him home. Then, again I realize how really very lucky we are that he's still here. He was a pretty sick little guy in the beginning. He still is, obviously, but man have we made progress! We went from 1 pound 5 ounces to 10 pounds 5 ounces! (can I get a Jenny Craig, amen!) Apneas and bradycardias (so much so that his resting heart rate in the early days averaged 195), lungs mysteriously collapsing, the dreaded oscillator for 6 weeks, NVN nutrition and liver stress, not holding him for 8 weeks, not being able to touch him for the first 2 weeks, an opening and closing PDA that miraculously closed thank heaven because there were times when there was no surgeon to close it, sepsis, pneumonia, pre-plus ROP now resolved, intubated and on a ventilator for 99 days, one 1 a.m. phone call, I can't even begin to remember how many blood transfusions, nitric oxide (which I now lovingly call the cursed nitric oxide because he can't get off of it), four rounds of steroids, two failed extubations, 3-1/2 months in critical care, one big-a*... ahem, large kidney stone, over 4000 ounces of breast milk, nearly 20,000 miles on the car...... and here we are... and our NICU stay is probably, right now, just half-way through. We're on day 166 in the NICU and I expect to be here at least 300 days. Statistically his chances of going home and actually living after this long of a stay are so small, and yet to look at him you'd never know he was a sick baby because he looks so great.Maybe we should take up a collection and make guesses on how many days Emery will be in the NICU, and we can put a collection jar up at the YFC office and whoever wins gets 50% and the other half can go to YFC. I haven't run that one by Sara yet so don't show up there handing her money lol! That was just a random thought that happened to come out my fingers. CPAP: Continuous positive airway pressure. It's what delivers oxygen to Emery's lungs and helps keep him expanded.