The doctors, as well as Chris and I, are realizing the conservative treatment with chest tubes is not working to heal her chylothorax. Most children with this issue heal on their own in 6-8 weeks. (As we all know, Juliet is NOT like "most" children.) It is time to try other options. The issue is most of those other options are surgical. While she is intubated, the team decided to try a pleurodesis. Basically, they put medicine INTO her left chest tube to create a chemical abrasion in attempt to seal the place where the fluid continues to leak. This can be very painful, so they kept her well sedated and with lots of pain meds. We won't know for 4 or 5 days if it worked. If she tolerates it without complication and it seems to be helping the chylothorax, next week they will try it on the right side. If it doesn't work, she may need another surgery to fix the issue.
It is very difficult to see her go through all of this. It is hard not to pick her up when she is upset. It is hard not to be able to dress her and snuggle with her. So many of the things we enjoy so much with babies is not happening with Juliet. I know she will be home in time and we will get to do all of those things...someday. For now, I will enjoy the time looking into her beautiful eyes, holding her hand, and singing her lullabies.
For all of you who continue to support our family during this trying time: WE THANK YOU! Juliet has a Christmas tree, a stocking and many presents next to her bed thanks to great friends. For the past week, we have received special treats on our doorstep EVERY day. All of these things put smiles on our faces and remind us how many people we have that love us and love Juliet.
Merry Christmas to you all!
From earlier in the week