Heart of Beckett

UPDATE (5/8/13)
It is amazing how different Beckett can be from one day to the next. Today was the complete opposite of yesterday, and I am truly grateful for that. I was told he was pretty upset early in the morning, but when I arrived he was awake and looking around. He fussed a little but was calmed down very easily. He was acting so much more like himself. The nurse and I were just talking to him and he was playing with his toys, lying so content in his bed. Then my mom walked up, which was a total surprise. She thought after yesterday I could use a friend, which was much appreciated. After playing for a while, Beckett got tired, and my mom patted him to sleep. Beckett woke up mid afternoon and was again pretty happy. My mom played with him for a bit, and I held him after she left. He slept until it was time for his next feeding. He got a bath tonight and was so calm during the whole thing, barely even crying when I washed his neck and under his chin, which he hates. One of the neonatologists even came in to play with him during bath time because he was so happy. A friend of ours had brought me dinner, so she was able to be a part of bath time and then hold him after. I rocked him to sleep and he slept so well. He woke when I put him back in his crib and then fought sleep for over an hour. I picked him up multiple times to rock him and he would fall asleep, only to wake back up when I laid him down. He did start to get upset, most likely just because he was tired. Eventually the nurse took over so I was able to come home.
So today was really a good day. Of course he fussed a little here and there, but that is normal. The big change of the day was they weaned his Fentanyl. They did increase his methadone to accommodate the wean, so we are praying Beckett doesn’t even notice. We will see. We are getting so close to him being off this drip completely and we are hopeful it will be a whole new ballgame when he isn’t dealing with that. Beckett’s oxygen is still up, but we are also hopeful that as he settles down from being so angry so often, as well as changes in some of his other meds, that will sort itself out. Perspective is everything, and I am chalking today up as a win. Thank you Jesus for giving us a better day. We pray we continue in this direction.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.