WARNING: venom ahead. Reader discretion strongly advised.

I'm sitting here pumping milk, as I do every evening while I update. But I have to wonder why I even bother with the milk. Evidently, I'm not good enough for my own child. Through a series of miscommunications, I didn't find out until today that Quinn is only getting my milk half the time, and formula the other half. They started doing this on Sunday. A nutritionist apparently tried to talk to Kurt about it when he was there yesterday. But she made it sound like she was talking about the addition to the milk with Human Milk Fortifier, not straight out giving him formula. So Kurt said he already knew that was going on, not realizing what she was talking about, and everyone went on their merry way. When I got there this evening, Quinn was feeding, and I looked at what was left to be given to him and thought "Hmm, that doesn't look like milk. It looks like wallpaper paste." Well, that's because it wasn't exactly milk. The nurse told me someone had tried to tell us about it, but obviously that didn't happen as planned. The concern is that they don't want to put too many calories into my milk because it messes with the osmolality of it, and throws that off for Quinn, and also that he needs extra calcium and phosphorus and he hadn't done well with the supplement they had given him. So, in comes the formula which has extra calories and the extra Ca and P. Guess what. He lost 25 g yesterday and had only gained 15 g the day before, whereas the day before that on full breastmilk, he had gained nearly 100 g. Fat load of good that extra formula is doing, eh?

I talked to an NP about what still needs to happen with transferring, and she talked about urology wanting to do a VCUG on him. This is a test to see if there is any urine going up into the ureters, increasing the likelihood of urinary tract infections. I had heard about 6 weeks ago that it would be recommended for when he was around 6 months old. Either I don't remember right, or the recommendation changed, and the NP didn't know which it is. But she said it's likely they would want to do it before he is transferred. I asked her to decribe the test in greater detail, which she did, just as I did above. I asked why it was indicated for him, and she said it's because he was small for dates, and because of his hypospadias, that an anomaly in one part is often enough correlated with anomalies elsewhere. She mentioned that he had had an ultrasound when he was just a few days old of his kidneys and that it showed no signs of reflux. But that wasn't as definitive as the VCUG. Then I asked her what the risks are. She said "Minimal." I tried again. "What are the risks?" She said there is always a slight risk of trauma as the catheter is inserted, but don't worry, radiology has done this lots of times before, they know what they are doing, and other than that, there are just very minimal risks. I said "I want to know what they are. I'm not saying they outweigh potential benefits, but I can't feel good about the decision without knowing what they all are." She really didn't have a good answer for me, and continued to downplay any risks. If I hadn't been holding Quinn, I'm sure I would have been a lot more demonstrative of how frustrated I was that I didn't feel like she was listening to me. She finally said, "Would he be okay without this test? Sure. Is it possible that he might have reflux and get UTI's? Yes. Wouldn't it be better to spare him the potential complications of that when we have this simple test to know for sure?" I told her I wanted to know more before I felt good about it. But then it occured to me and I asked if this was something that they would ask our permission for or if it fell under the blanket consent we signed at the beginning. Blanket consent must be a boon to them. She went on to tell me that it must be so hard to be in my position. By this point I was extraordinarily bitter and said "You're right. You have no idea. I don't even feel like he's my child. You do these things and we have no say. And now even my breastmilk isn't good enough for him. That was the one and only thing I could do for him and now that doesn't even count." She tried to tell me not to think that way, that of course it's doing some good, he's still getting some and will still use the supply that is currently taking up one third of our freezer space, but the words rang hollowly. They sounded like token gestures.

Here's another fun tidbit for today. As usual, I picked up Quinn's chart to see how the day went, and a nurse at another station told me that they don't allow parents to look at it. I asked why and all she could say is that they don't allow it. I said I had been doing that for a long time, but the broken record just said they don't allow it. When Quinn's nurse came back I asked her what was up, and she said it's a new rule that they don't allow parents to look at it while the child is in the hospital. You can ask any questions you want from anyone, but you yourself can't look at it. Does that sound extraordinarily fishy or am I just paranoid? And once again, she couldn't tell me why, just that she had only just heard about the new rule. And no, she didn't know what they could do to me if I continue to look at his chart.

Here it comes, and yes I am yelling. QUINN IS MY CHILD! HE DOES NOT BELONG TO THE HOSPITAL NOR TO ANYONE WORKING THERE. I HAVE A RIGHT TO KNOW WHAT IS HAPPENING AND HAVE A SAY IN HIS CARE.

I realize he wouldn't be here without their help. This won't be a popular idea, but I submit to you that it is only unthinkable until you are in this situation. I am here, and so it is on my mind. It's fortunately only a few parents who look at their child and wonder if death isn't the more merciful option. I do believe that eventually Quinn will be okay, but consider his life thus far. He has known little besides pain, fear and chaos. Our visits are a relatively small portion of his day, and when they coincide with meetings like tonight, where I was exuding negative emotion, I don't know how beneficial that is anyway. In short, Quinn has led an absolutely miserable existence. Some babies live their entire short lives in the NICU and that is all of this earthly life that they know. Pain, fear and chaos. And parents who are too handicapped to even provide positive emotional influence. I could be entirely descibing my own experience, and everyone else whose child ends up in the NICU doesn't feel this way, but somehow I doubt it. I won't pretend it represents every NICU journey, because they all vary greatly, but I seriously doubt I am alone. And it's a taboo subject, so no one wants to hear about it. Well, there it is. I've bared my soul to the world. Do as you like with it.