I feel as though the next week of updates could be a lot of the same. Nevertheless, it is our reality, and Beckett’s reality, so I will continue to share. Beckett spent a lot of the day crying, at least to me it felt like a lot of the day. He did sleep for a few hours this afternoon, but he continues to wake up periodically and cry inconsolably. I just sit next to his bed and hold his hand, put pressure on his arms (they say this is much better than stroking them) or rest my hand on his head. I also try to hold him when I can. He does take his pacifier at times, but even that doesn’t always work. Needless to say, it is emotionally exhausting, so I try to take advantage of that rule “Mom sleeps when the baby sleeps”. We will continue to work through this, and as I must continually remind myself, Beckett is not the first to go through this process and he too will come out on the other side.
So for the good news. This morning they put in a nasogastric tube to try feeding Beckett directly into his stomach. Previously he was being feed into his small intestine. They left his other tube in to make sure he would tolerate this transition before taking it out. He did not have any spit up the entire morning and afternoon, so this evening they pulled out his old feeding tube, and now he just has one small tube going into his stomach. This is a big step towards him being fed normally. During the trial however, since there were multiple tubes in his nose, his oxygen was a little less than normal for most of the day, so they kept increasing it little by little. Once they were able to take out the old tube he did seem to do a little better so we pray he adjusts again and is able to decrease his oxygen to where it was before. His chest tube drainage has also decreased significantly, so hopefully they will be able to remove it soon. Please pray for this also as the area around the insertion of the tube has been a little red. This morning they cultured it, and we pray for no infection. Overall, today Beckett made some huge steps and we celebrate God’s faithfulness. One last thing, today we had the wonderful surprise of Jonny coming down. I turned around to see him entering the room. It was wonderful to have him there for a few hours and good for him to be with his son. He did have to return home for class tomorrow, but what a special treat as I was not expecting him until tomorrow night or Friday. Yeah for surprises!
https://heartofbeckett.com/ — with Jonathan Rupp at St. Vincent’s Women’s Hospital.