We're Coming to the Crossroads

My sweetheart,
You seem so unfazed by all of this.  Yesterday, your daddy was at the hospital three separate times and never even saw your eyes open.  (Grammy didn't want to rub it in that she was there late in the evening and you were wide awake...)  I don't really know what day it is anymore, but I will try to recap what this week has been like.

Our doctor has run your bilirubin test every morning to see where you stand.  A long time ago, we asked what the goal was for that number, and they said it needs to go to almost zero in order for you to go home.  Your liver is just working so hard to process it out, but you are still eating great, almost 100 ml each time, which is about 5 oz.  It has helped with your coloring a lot, even though you still seem to have a bit of a golden bronze coloring in contrast to the rest of our very white-as-a-bedsheet family.

Monday's hida scan was supposed to tell us if your liver was processing out all the things it is supposed to be, but the GI doctor warned us that he would not be surprised if the results came back abnormal.  And they did.  None of the dye made it out.  Your tiny little liver is working hard to get out all the bilirubin and the excess iron in your system, so the dye just had to wait in line.  The doctor said that if your numbers continued to trend down that it might be more conclusive to run the test again, but your bilirubin would have to be below a 4.  Yesterday it was down to 7.0 and then today it suddenly went back up to 7.5.

The good news is that our doctor knows that we shouldn't go on like this forever.  He was optimistically waiting and monitoring you to see if your body could keep fighting and bring the levels down gradually.  However, if your numbers start to trend up, he knows that we should consider going to Houston.  Any kind of surgical procedures need to be done before you are six weeks old, and you are approaching three, my love.

The bad news is that there are still possibilities that you have a malformation called biliary atresia that would require surgical correction to the duct that leaves your liver, and they may still need to do a liver biopsy.  Fortunately, I believe both of these procedures can be done at the same time if necessary, which would minimize your exposure to anesthesiology and infection.  A liver transplant is still not off the table, but we are trying not to worry too far in advance.

Monday will be another round of testing, and our doctor has decided that those results will be the final factor in whether or not we go elsewhere.  I am feeling more at peace about it, but there are still lots of questions regarding what it will mean for our family since Daddy is already back at work and Cameron certainly can't sit around a hospital all day.  We may be praying a lot in the next few days for God to make the next step clear.  I think God wanted me to see this scripture today:

Isaiah 30:21  "Whether you turn to the right or to the left, your ears will hear a voice behind you saying, "This is the way, walk in it.""

We are so grateful to have many friends and family tell us that they are praying for you, ready to help us in any way that they can.  You are very loved, Rhys Man!

Hugs and Kisses,
Mama

P.S.  Sorry that I didn't see you much yesterday.  My doctor confirmed that I have mastitis (Yeouch!!!!) and the fever and chills were just dreadful.  It makes you feel like you have the flu and just can't function.  I was feeling better this morning after a few rounds of antibiotics, but I only made it to lunch time before I was feverish again and had to come home for a nap.  You are still a very happy eater and are the nurses' favorite for sure.