Beckett is such a happy baby. In fact, his nurse tonight asked if he was always that calm. My mom and I just looked at her and at the same time answered yes. Beckett was swaddled up for bed, sucking on his pacifier andjust looking at her. One of the nurse practitioners kept walking by to stare at his picture on the window. She said she just wants to eat his face. She even did some little dance she was so excited about it. She said she comes in and talks to him at night, but what they talk about is a secret. It is so comforting to know people are talking and playing with him when I am not there.
Today was a pretty uneventful day. They only made a few changes. They weaned his fentanyl and he has been doing great. I think they have him on enough methadone that he hardly even notices. I mean, when they gave him his Lovenox injection today he barely even flinched. They are also exchanging one arrhythmia med for another, so they slowly are decreasing one and increasing the other. Lastly, they increased his feeds to 72 mLs. Hopefully he will start really putting on some good weight.
Today we just got to play and hang out. He spent time in his bouncy seat, which he always loves as well as played with his toys in his bed. His new thing is to stare at himself in his mirror, which is adorable. He was patted gently to sleep by my mom who is staying with me tonight. We are having another care conference tomorrow, and we are praying this one goes a little better than the last. Also, please keep praying that Beckett’s heart is able to sustain his body, as they will soon try to take him off the Milrinone again. This is what led to the problems on Friday, but we know he has to come off it eventually. As always, we continue to pray for complete healing, and trust God with give Beckett just that when the time is right.
I also want to say a huge thanks to all of you who continue to diligently follow and pray for my son. It has been four months since this journey began, and you have not forgotten us or let our story drift by the wayside. I hope you truly know how grateful we are, and will always be.
— with Jonathan Rupp at Riley Hospital for Children at IU Health.
You will always be part of our Evident family. Our prayers are always for a full healing for Beckett. You and Jonny get prayer for strength, peace and patience, although praying for patience can be dangerous. Our loving God will give us trials to test and strengthen our patience. Please know that you are always in Curt’s and my prayers.
Good day…and much to thank God for. Continuing to pray for Beckett earnestly every day,, as well as for you and your husband and of course Beckett’s grandparents too. Being one, I know how this would (and does) tug at my heart strings on their behalf, too. Keep hanging in there, and we will keep praying.