Kirby has continued to make good progress over the last few days. They were able to remove her arterial line yesterday so we were finally able to hold her. She has one chest tube still that is not ready to be removed because it is still draining some fluids from around her lungs. They will leave that in for a few more days as it continues to minimize. Some of this fluid comes from the pressures in her heart because of them having to do an early second stage surgery, along with her having chylothorax (due to the surgery, the fats from formula leak into the pleural space around the lungs). She had this after the previous surgery as well. She is on a special formula that is essentially fat free that will help with the leaking of the fats. With that said, we also have to battle the fact that she has the milk protein allergy and this formula is not made to help with that....so we have an uncomfortable at times fussy baby. Bless her heart.
Today is a big day! We were able to move back upstairs to her regular room! We love the PCICU staff but love being back in a room. Pray for continued healing of Kirby's valve (it is still leaking but about 50% less which Dr K says is ok), healing of the chylothorax and the milk protein allergy and reflux. The goals for Kirby over the next few weeks will be to come off of the oxygen (she is only on a small amount), come off of the heart medicine that is going through her PICC line, and learn to eat by mouth. So, these are our prayer request! We are closer than ever to coming home and we are so ready to begin our life together at home as a happy family! Love to all