02.04 Update

(by Bethany from http://iamknittogether.blogspot.com)

Weeeeeee!  Today has been an up, down, up day already..and it's only noon!  Last night was very quiet.  We bathed Lydia (she liked it) and Jonathan fed her a bottle (she liked that too) and we all rested well.

This morning we woke up to rounds starting early and Penny back on the "blue light special" (phototherapy for jaundice).  We've been noticing that she had a more yellow look for the past few days but were told that it was probably the fact that she's been on the IV nutrition for so long.  This morning the doctor told us that her bilirubin was up to 19 and that he didn't think that was an accurate number because she wasn't glowingly yellow. He had the labs retaken to confirm that those numbers were a fluke...and they weren't.  She was up to 21.  I had just gotten off the phone with my mom saying "I'm not going to worry until the doctors are worried", when the doctor came in and said "I'm worried about Penelope."  Because the timing of the bilirubin bump was immediately after her transfusion, his first thought was that it was something wrong with the blood.  So that is being checked into.  Second possibility was something with the liver, so the Radiologist came up to ultrasound her liver. Her liver is fine.  Now we're waiting on the results from a hepatic blood panel that will check the function of the liver.  Third, we saw a GI specialist who examined her and found nothing of concern.  He said that this kind of jaundice is always multifactorial (lots of things could have caused it) and all of the possibilities are treatable.  That made me breath more easily for sure.  She's been taken off of the phototherapy because the type of bilirubin that she has (conjugated rather than unconjugated...yea like the verbs) is not the kind that is treated with phototherapy.  

So here we are.  Waiting for results and riding the ride.  

Specific Prayer

• Penelope's bilirubin to miraculously level out and for this to be nothing at all
• OR for the cause to be clear and treatable
• really, for her discomfort level to be as low as possible through whatever happens
• for Penelope to still be able to get off of this ventilator despite this setback 
• Lydia to continue to do well on her feeds and gain weight

We'll send brief updates as we get more information.  Thank you so much for walking down this road with us.