Tuesday Update!

Hi All,

Sorry for the delay getting an update to you all. We've been busy since the last one!! Where to start. Riley says hi!



Well, when Riley did her first blog post on Thursday, the doctors were starting to talk seriously about taking her vent tube out. Unfortunately she wasn't quite ready yet. The doctors decided that they wanted to try to wean her off of the nitric oxide over the weekend. She has been on the NO, along with oxygen, since birth. A broncho-dilator, it helps with her gas exchange and pulmonary pressures. Over the weekend, the doctors progressively halved her NO levels: 20, 10, 5, 2,5, 1 and then...none! Along the way, they had ultrasounds done on her heart to see what the effects of the reduced NO were on her pulmonary pressures. The results were great; the ultrasounds showed that her pulmonary pressures were about where they should be for a non-CDH baby, despite the reduced NO levels.

While the weaning was going on, Grandma and Poppa Trask brought Chase out for a visit over the weekend. He was excited to see the be-be and liked patting her (gently) on her head. Sandy and I were happy to have some play time with him as well!

On Sunday, we got word from the doctors that Riley would be ready for extubation on Monday or Tuesday. The doctors also showed showed us her latest chest x-ray. Her left lung is now almost as big as her right! The left lung will never be quite as efficient as the right, but the lung growth is contributing to her breathing, so this is a very very very exciting development that we weren't expecting.

I was ready head out to Boston from work on Monday if the doctors decided to extubate, but then Sandy got word that extubation was scheduled for early Tuesday. Grandma Coombs is up from Florida, so she watched Chase last night and I headed out to Boston so that I could be there early this morning. The doctors confirmed during rounds that Riley was ready to go!! We waited for a few hours until Riley graced us with some awake time, and then the tube was pulled! She is currently getting oxygen from nose cannulae and this is a major improvement over the ventilator. Some pictures are below of Riley without her tape mustache and Mommy having some quality time with her. It's such a joy for us to finally be able to hold her, along with doing some of the diaper changes.

The next steps are to slowly wean Riley off of her sedatives and heart medications which are administered through the PICC line in her thigh. Somewhere along the way, the PICC line will be removed and she'll be closer to being released to the floor (10 East). Once she's on 10 East, she'll work on learning to eat and getting stronger. We're still looking at a few more weeks at Boston Children's, but we are getting closer to bringing our baby girl home!