August 20

Well, today we have good news and we have mediocre news. Will is up to 5 lb 1 oz! He's still tollerating full feeds, hovering just above room air on oxygen and doing well all around. I let the nurse know before I left the house that I wanted to talk to a doctor today, so when I got there about 1 she ran right over and got the doctor. Luckily it wasn't Will's official doctor, who I have a gradually growing pocket of rage for which is escalating to the point I'd be very happy to see him kicked down a flight of stairs and attacked by a swarm of rodents. I talked to the newest doctor there, who I've spoken to on the phone before but never met. She's really nice, gives me straight answers and tells me information I didn't know to ask about so I like her.

I asked about the medication he's on, I read in his chart to see what he was taking and looked it up online, where I discovered one was not supposed to be used in people with circulatory problems. She told me he was on it before but it was discontinued around the time he had his cardiac arrest. It is that NICU's policy to put any baby who has a hemocrit (anemia) test lower than a certain number on this medication to help and prevent the need for a possible transfusion. He apparently was automatically put back on it (which of course takes his assigned doctor's approval) after his most recent transfusion. I told her I am REALLY not comfortable with him being on this medication after the circulatory problems and CODING! since it carries a side effect of cardiovascular problems. I would MUCH rather he get another transfusion that have another heart attack! That isn't even a decision, it's a no brainer! It was obvious from the look in her eyes that she completely agreed with me that putting him back on this medication was out of line but of course she couldn't tell me that outright. She's only been there a couple weeks, so she wasn't there at the time he was put back on it and doesn't have enough seniority to question the lead doctor's decisions without being requested by a parent - which I did. She sent the order to discontinue the medication, and if he needs another transfusion then he needs another transfusion. I won't tollerate him on a medication which has side effects that could kill him on the chance it might help him avoid something that he's already been through and is relatively low risk.

I'm still pretty ticked off and will be filing a complaint with the administration this week. I also made my expectations for his timely discharge clearly known, I've seen babies come and then go home with the same problems he has in the time we've been there, they're just dragging their feet with the excuse that he coded - they were slow starting his feeds for that, slow speeding them up, slow, slow, slow though he's proved every step of the way that he's ready to keep going. He's even shown frustration, looking to nurse when they were tube feeding and wouldn't even let him try. I've requested a list of all medications given, when and why and the doctor said it will take a couple days to compile but she will get it for me. And the good news for today - we had a great day on nursing today! I got the nurse to get me a smaller size nipple shield, which fit Will much better. A little uncomfortable for me, but not painful and he was able to latch much better then actually got some milk! He's had a couple swallows before, but he actually was able to get a rhythm down for a couple minutes at a time and coordinated suck-swallow-breathe. Didn't last too long, we were near the end of nursing time and he was getting tired by the time she was able to find one - impressive since lactation is closed on weekends so I don't know where she got one! I'm much more hopeful about our long term odds of successfully breastfeeding.