Highs and Lows

One of my coworkers, in my job at a day treatment program, has used an example from his own life to assist the kids we work with in processing their days in terms of what went well, and what could have gone better. He uses the example of sitting down at the dinner table every night, while his kids were growing up, and having everyone state their highs and lows for what happened throughout the day. This exercise is an appropriate way, I believe, to go through how today felt.

Early this morning, Ainsley's tube for her ventilator came out; either of her own doing or by the tape holding the tube in coming loose. She demonstrated the ability to breathe on her own fairly well, so that assistance from the respirator was discontinued. We were told she was breathing on her own, but was working hard on demonstrating that she has the ability to swallow, cough when needed, and that she has a gag reflex. We had previously been informed days ago that Ainsley had been observed demonstrating her gag reflex, but we had yet to see evidence of swallowing or coughing. In seeing her today it was easy to observe that Ainsley was having some troubles with disposing of secretions in her throat. It seemed that she was trying to cough, but couldn't quite get the force needed to clear her throat. Despite not having productive coughs, she didn't have liquid coming from her mouth and always seemed to do away with whatever secretions were giving her difficulty breathing. As this occurred throughout the day, we concluded that she was indeed swallowing because there was no other way that she could rid herself of these substances/secretions. Through her rattled breathing, the nurse, as well as Ginnie and I, could swear that we heard some coughs as well though. 

Ainsley continued to have steady breathing though and Ginnie and I both ended up having the opportunity to hold her today! It was AWESOME! It's hard to describe how wonderful holding her so close and being surrounded by her sweet presence was! It is hard to get pictures sometimes in the NICU, but here are a few that came out ok.

It was a great time to share with my wife and daughter. We also had a great visit with our friends Zach, Marissa and Asher White, who came by to share dinner and their experiences with us. It did both mine and my wife's souls and minds good to ask them questions and listen to what the had learned during their NICU experience and how they had navigated the roller coaster of emotions, as well as peaks and valleys of hope.

Towards the end of the night, along with the nurses, we observed Ainsley having  a much harder time catching her breath.  She was taking very quick short breaths.  Her blood gas was taken and found that her carbon was very high, further demonstrating that she wasn't getting productive breaths. She was just having a hard time, and it was decided that she should be given the assistance of the respirator again.  This is technically seen as a step back I guess, but after seeing how much more comfortable and relaxed she was, I knew it was the right thing. I know the saying goes, "Two steps forward and One step back," but I really feel that this was one step back after about 5 forward. Our girl has worked SO hard during the first week of her life, and I just know she has so much more to show us! Feeling kind of spent tonight so I'm going to leave it at that.  Keeping hope alive here, and thanks for all the love and support out there! It is felt and appreciated!