News from the NICU

After a few days of "not feeling so hot", Jules is back on the ventilator. She kept getting air trapped in her pleural (lung) space and it was making it difficult for her to breathe. Most likely the air was coming from along her chest tubes. Since the tubes have been in for over 2 months, they aren't as tight as they once were and frequently leak. If they aren't tightly sealed, air can sneak in along the track that her body forms around the chest tube. Yesterday morning, they decided to put in a 3rd chest tube to try to get the air out. This required full sedation and therefore, she needed to go back on the vent. Last night, they took out the old chest tube on the right side since the new one was draining fluid.

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