Many times in life I have gotten caught up with wanting things to happen within my own time frame, and I can be quite impatient with some things. For instance, with getting my wife presents. Now, some of the gifts for her were actually given on that appropriate day of Christmas, birthday, or anniversary, but very often it was,"Sweetie, why don't you go ahead and open it!? You can open it now if you want, I think you'll really like it". I've been reminded of this in the past couple of days as I strive to remember to tell my anxious energy and mind to SHUT UP when in comes to what Ainsley is doing and when she's doing it. She is on her time frame and is quite frankly, the boss. She has told us all this in the past couple of days by expressing that she needed a break to recuperate after making non-stop positive steps since last Friday, giving us all a wiggle and move show, and then having an energy draining day of breathing on her own (while doing so through some secretions all day). After a day off the respirator, it was thought best to place her back on and to also assist her in recovering her baseline with some Nitric Oxide. I will say though that the respirator she is on now is not an oscillator, doesn't shake her body, and appears to be a more peaceful experience for her. During the past two days Ainsley has retreated within, and has not been showing us much movement at all. Until tonight! By this evening Ainsley was looking much better with her swelling having gone way down, her blood gas results (while still needing work) are looking more positive, and when I changed her diaper she was kicking some and wiggling in response to cold wipes. She also moved all four limbs when being moved by the nurses to be weighed! Our night was also brightened by having a visit from a good friend who brought us the best fish and chips I've ever had along with some beautiful blankets for Ainsley, and another friend who brought a very gracious gift and card from co-workers and friends.
All that said, my wife and I have experienced one of the first large bumps on our journey with Ainsley. Although, I think that bump mostly shook us and that Ainsley is on her own schedule, where she has much more to show us when she's ready; 'cause she's the boss.