Tuesday, June 14, 2011

I hate the liver!

Bronson had a much better day today! First of all, I finally got to give him a bath! He's received lots of baths from the nurses but they always seem to do it at night when I'm not there, but, today it was my turn! It hasn't been that long since I've bathed a newborn, since my daughter is only 15.5 months old, but with all of the monitor lines, oxygen tubing, PICC and NG tube lines I was a little bit nervous that one of the lines would get caught or come out. I find it hard to move him around easily with everything attached to him but the nurses are accustomed to all of it and they just flip the babies around like it's nothing! 

Last night Bronson was actually calm and quiet and slept most of the night for the nurses - which is a huge improvement after the last couple of nights he's had. Bronson's breathing improved a lot overnight and this morning he was taken off of the CPAP and switched to nasal prongs with oxygen. He's been tolerating it all day with no problems! Woohoo! I hope we don't have to go back to the CPAP any time soon.

I'm getting frustrated with hearing different stories from different members of the health care team. Yesterday I was told that although Bronson's liver has very low function it's not in the range they would consider "failing". I know that "low functioning" is still not great but the fact that it's not "failing", in my opinion, is great news. However, his liver function tests continue to get worse and his conjugated bilirubin levels are almost as high as they were a couple of weeks ago. I believe that the normal level for conjugated bilirubin is supposed to be 0 or somewhere around there. Bronson's conjugated bilirubin levels were coming down and were as low as 210 (which is still VERY high) but today they're back up to 280. The bilirubin is broken down by the liver and then removed by the body (you poop it out!). So, along with the other blood work associated with liver function,  these levels are very high and show that the liver really isn't functioning properly or even close to how it should be. Bronson still has fluid build up in his abdomen (also associated with the liver function) but it appeared to be down  a little bit today according to his abdomen measurements. We're still praying for his liver to jump start and to get things functioning as they should be. Once his liver starts functioning as it should all of the other problems should clear up...I'm really starting to hate the liver! 

Also, I almost forgot to mention that Bronson got moved into a crib today which gives him a lot more room. Compared to almost all of the other babies around him, who are all preemies, he's getting to be so big! I think at the beginning of the week he was weighing somewhere around 8lbs 12oz and they think that this measurement is more of his true weight because he's lost almost all of the extra fluid he was holding onto for so long. 

I keep telling myself that we've come so far from where we were but, we also have a far ways to go.... One small victory at a time....One day at a time... We'll get there soon!


Lauren Farina said...

That's great you got to bathe Bronson today! I think the wires would intimidate me, too.

I'm just curious... I know when Noah was a newborn I was told the best prevention and treatment for jaundice is to nurse, nurse, nurse so the baby can poop, poop, poop. Because they have to poop to get their bilirubin levels down (like you said). Obviously Bronson is special circumstances, and only recently started eating on his own (having bottles). Is this partially why his bilirubin levels are so high? Because he's not eating enough to poop enough?

I really am just curious. Obviously I don't claim to be a doctor!

Angela Anthony said...

I always thought that the cure for jaundice was what you said, along with going under the phototherapy lights. But, I've learned that there are actually 2 kinds of jaundice. The first one is caused by problems with the unconjugated bilirubin and it's treated with the pooping and phototherapy. The other jaundice problem is caused by the conjugated bilirubin. The only way to treat this jaundice is to actually treat the underlying problem, which in Bronson's case is the very low liver function. But, they have no idea what is causing the decreased function... so it's frustrating! I wish just nursing, pooping, and lights would fix it.. that would be so easy!

Angela Anthony said...

Oh, and I guess I forgot to put this in an update but the day I was supposed to try bottle feeding Bronson he wasn't interested and he couldn't figure out the breathe, suck, swallow pattern. We were going to try again the next day but then he started having a lot of problems again and it's been on hold ever since. But, I was told today we might be able to try again tomorrow since his breathing has improved! And then, hopefully, try breast feeding shorty after that!

Lauren Farina said...

Ahhh, I see. I feel smarter now. lol.