Well, Addie successfully pulled out her feeding tube twice this weekend and had to take full bottles without it. She was so happy to have her nose clear that she stayed awake for 4 consecutive hours, bright-eyed and happy. So, the nurse asked if we wanted to go without it. Her oxygen was good too, so she is without that tube most of the time. I got some pictures with just the tape on her cheeks, but we've got that off and, if she would wake up without fussing, I'm hoping to post some pictures with her face tube-free! It is so nice to see her little cheeks and a dimple was revealed on one cheek!
She's getting purple more often (a side effect of her heart problem) and having some strange spells where she seems to be unable to catch her breath. But, her weight is up to about 5 lbs, 12 oz. Every day has been different. Her congestion has improved and her diaper rash is about gone. We're trying to enjoy everything about her as long as we have the opportunity and trying not to stress about things like the future, and hospital bills, but Tim isn't very good at that. Ahh...life is so stressful sometimes! It's hard to be calm and enjoy the baby with so many variables. We're doing okay today, we just don't know how long her heart will function along with her other problems with her kidneys, intestines and any unknowns! It's so hard to see her look like she is in pain, especially when she has trouble breathing. We're not sure how her body will handle things as she gets bigger. As her mother, I just want her to feel better and be healthy. She's so sweet, I can't describe how it feels when she looks up at me, wide-eyed. It's hard to believe she has such a severe problem. I'll keep adding photos, we have so many!
