Beckett has had a good day, but a rougher evening. Beckett’s withdraw scores have consecutively been low so today pharmacy decreased how often he receives his methadone. While he still gets the same 24 hour total, he gets a dose every twelve hours now rather than every eight. So, tonight it appeared to hit him. While I was holding him this evening he would cry pretty hard every 15-20 minutes and it was very difficult to help him calm down. While he did calm down each time, it was very hard to watch. We have been extensively warned that this will be a trying time, but like with this entire experience, you don’t realize the difficulty until you do it. He was sweating all over, fidgeting and crying excessively. I have such a hard time leaving him while he is awake and no matter how much I rocked and tried to soothe him he just would not fall asleep. When he finally settled down for a while I put him back in bed, changed his diaper, and swaddled him. He was upset at first, but I think he just tired himself out because he fell asleep shortly after. I quickly made my getaway while he was comfortable. One positive is his vitals didn’t change too much while he was crying so hard. He was even able to keep his oxygen up. So please pray that he is able to make this transition quickly and painlessly, and pray for Jonathan and I as it is extremely difficult to watch our baby in agony.
To leave you on a good note. Both the cardiologist and the nurse practitioner that works with the surgeon came by today. They both said that from their perspective he is doing really well. So, from a heart standpoint Beckett looks great! The cardiologist continues to say they believe he will outgrow the issue with his fast heart rate. So, as there is always a possibility something else could come up, we are moving on to working through the withdrawal, feedings/growing, and coming down off the oxygen. All big tasks, but nothing Beckett can’t handle, as he has shown so many times already. He truly is such a sweet baby, and has been so much more alert and interactive the past few days, spending a lot more time awake. We enjoy the moments of just being able to be with him. Today was nothing beyond what was expected and we pray for many more days of the same. — with Jonathan Rupp at st Vincents womens hospital.