Mama bear, hear me roar.

I slept for a total of 2 hours last night, and spent the rest of the time trying not to think about everything that's going on. But I'm sure it's not a huge logical leap to see that concentrating on what you don't want to think about makes it hard to forget about it. The more I thought, the less sense things made. So this morning, I got on the horn. All told, I made somewhere in the neighborhood of 17 phone calls today. But it wasn't until about 4:30 this afternoon that I finally talked to the nutritionist, who was the main person to make any changes in Quinn's diet. She began by apologizing profusely that we hadn't been informed of the change beforehand. She recounted how that had come about, and that we most definitely should have been told and presented with the options before she went ahead and made the orders. And it turns out there are other options. There is a different fortifier that has the calcium and phosphorus Quinn needs that can be used instead. She said that isn't usually her first option because A) the Ca/P isn't quite as high as in formula and B) it isn't as sterile. Human Milk Fortifier usually comes in individual packets that are mixed in with the milk. Formula used in hospitals comes ready mixed in bottles. But this other kind of fortifier comes in a can of powder, much like the baby formula available in stores. Therefore it can be opened and closed multiple times, and that can in theory introduce bacteria. I pointed out that breastmilk isn't sterile and they definitely use that. She agreed, but said in that case the benefits of breastmilk definitely outweigh the risks of infection from it, and they really try to reduce any source of contamination. She then offered this other fortifier as an alternative option for Quinn, to which I readily agreed. She apologized again, saying she would never have put the orders in if she had known I was not okay with Quinn getting formula, but we already know that story. I told her that this is something that really worries me about Quinn's care, the fact that there are roughly 1,000,007 people involved in it. The message that the nutritionist wanted to start formula was passed through three different people before a slightly garbled version of it came to us. Consequently, we didn't know what was happening for 2 full days. Then it took another full day to track her down and get it straightened out. This, more than the distance, is the reason I really really want to get Quinn transferred to the smaller hospital. I still don't know when that will happen. One of the people I talked to in trying to get the formula thing under control was the nurse practitioner on call for today. She said she was pretty sure urology needed our express permission for the VCUG, and that that conversation would afford an opportunity to ask more questions about it. So all in all, I'm feeling a bit better about life today. I still haven't called the patient advocacy office at the hospital to find out why we poor stupid laymen aren't allowed to look at charts. That will have to wait for another day. I had bigger fish to fry today. And mission accomplished. He is getting no more formula. Just breastmilk and fortifier.

As for Quinn himself, he is still doing wonderfully. He's stepping down slowly but surely on O2 and pressure, and he did gain weight today. He's at 1785 g, 3 lbs 15 oz. Kurt said Quinn was awake and smiling while he was there, and that was fun. We're getting closer still to our goal of all this being a distant nightmare.