Heart of Beckett

UPDATE (4/20/13)What a difference 24 hours can make. From what I am being told of how sick Beckett looked yesterday, today he looked as if nothing had even happened. I walked in this morning feeling extremely uneasy, much like I always do after a rough day. Beckett was doing well, but it still did not seem to ease my concern. After a while the cardiologist came up to speak with us, and he helped calm my fears. They were working on adjusting some of his meds, and his oxygen was at 30%, which had gotten all the way down to 25% through the night. They are not going to do anything major for a few days, but rather are letting the dust settle from yesterday and allowing his body ample time to recover.

So, that meant lots of rest today. He did sleep a good portion of the day. In fact, I held him for four hours this afternoon and he slept the entire time. He was awake a little in around lunchtime, playing and having fun. Hopefully you were able to see the video. Then this evening when I put him back in bed, he of course woke up during the transition, and was ready to play some more. He was so happy, just looking around, back and forth from Grandma Linda to me. He was playing with his rings and chatting away. Hopefully you were able to see that video. So we just hung out and talked to him until he got tired and began rubbing his eyes. I tucked him into bed for the night and he was beginning to drift off to sleep as we left.

So all in all today was a good day. Very calm and relaxing, at least for Beckett. He was having an arrhythmia all day where his heart would beat early and then pause, which made the monitors think his heart rate was very low. Pretty much most of the day his monitor would alarm that his heart rate was too low. At one point it was reading 56. This is even low for an adult, so definitely low for a baby. It would correct very quickly but was still very unsettling to watch all day as it bounced back and forth. As we were getting ready to leave it appeared to be settling out and not happening as often, and actually I don’t think I heard his monitor alarm for quite a while. I had to call his nurse this evening for another reason, and she told me she had been watching his monitor for about an hour and he hadn’t had any arrhythmia, which is awesome. This too was something we discussed with the cardiologist and he wasn’t concerned. Even so, I would prefer it to be in a normal rhythm of course.

So, like I said, today was a good day and Beckett appears to be feeling much better. He is so resilient, like most kids are, and he bounces back as quickly as he gets sick. That is something for which I am so grateful. It was such a better day Jonny was even able to sneak away to a Phil Wickham concert back at Taylor. We were also blessed to have some family friends visit. I also want to say a very special thank you to Dr. DeSanto from St. Vincent’s NICU for taking the time to come over and check on Beckett. It has always been obvious how much you cared for him, and we are grateful for all you have done.

Now we find ourselves in an all too familiar place, grateful for a good day, but praying for even better ones to come. We are constantly reminding ourselves to enjoy the moment, relish the memories we are making, and to not wish this time away. So, as we face each new day, we take joy in the fact we are spending it with our son, and there is no place I would rather be.

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