It’s almost midnight. I should be sleeping, B is asleep in her hospital crib and Grant is asleep but all these thoughts and “what if’s” just keep flooding my head.
Bailey has been running a fever since Monday. Highest it’s been was yesterday 102.4. My mom took her to the doctor Tuesday and Dr. Miller ruled out all the “normal baby” stuff- no UTI, or ear infection, or strep, or flu. So we settled on viral unless we thought deep down it might be liver. You can never really know. So finally today after Bailey took a 4 hour nap and woke up with a 102.0 fever, my gut told me that this isn’t getting any better and to bring her into the ER. Labs confirmed our suspicions- her conjugated bili is 1. That’s high. It hasn’t been 1 since over a year ago after her Kasai. Even with our cholangitis episode in January, the highest it got was 0.8.It’s just so mind blowing because literally 1 week ago her bili was 0. And now it’s 1!? How can everything go so wrong so fast?!I’m stressing out because what if this is the beginning of her road to transplant?? I’m 12 weeks pregnant. What if she needs a transplant in the next 6 months? How will I be able to be there for her without compromising myself or her new baby brother or sister? I’m trying to give it all to God, because I know He already knows the outcome and everything happens in His perfect timing. It’s just a lot to think about right now – and not a lot we can do to “plan” for anything right now.
So the plan for now is same as last time. PICC line and 3 weeks of antibiotics and we can be released as soon as her bili starts to trend down.
Prayers for her bili to respond to the antibiotics, for Bailey not to be in so much pain, and for peace for me to trust God’s timing and plan for our family- no matter what the course may be.