Heart of Beckett

UPDATE (4/17/13)

What another great day! Beckett slept peacefully literally almost the entire day. He was awake for about an hour during lunchtime, and then for about another hour this evening. He was so happy when he was awake. He smiles so big and talks to us. Boy does he have a lot of stories to tell. This evening my mom was here while he was awake, so he was able to show off how he reaches and plays with the toys hanging over his bed. He does really well for not having had a lot of true playtime the last three and a half months. Everyone talks about his attentiveness and social skills. They say he makes great eye contact and loves to interact with people. Even the neonatologist had to spend some time playing with him today after her assessment. It is so great to know he is a happy baby despite all he has been through.

On to the logistics. The big news of the day is Beckett’s billirubin came way down today and they were able to pull out his drain. We pray this problem does not creep up again down the road. This morning when the doctors were in his room, they said his Vapotherm was barely in his nose and he was doing just fine, so they turned his flow down to 3 liters. He has been doing great with that. They are continuing to wean his Milrinone which he has been tolerating, and it will be turned off completely tomorrow morning. They also have an echo scheduled for the morning once he is off it altogether, as well as started him on a small dose of Captopril, which will help with his heart function. His last IV med was switched to oral today, so after his antibiotics in the morning he will no longer need the IV in his scalp. I cannot wait for that to come out, which I am actually surprised it has lasted this long. They also plan to begin weaning his fentanyl again tomorrow. So, lots of changes, but all in the right direction. I have told Jonathan for a long time that eventually the drastic set backs will have to stop and Beckett will have to make continual progress. I am praying that he has turned that corner and it is only up from here.

We had some special visitors today. One was a nurse that sat ECMO back when Beckett was first put on. She could not believe how big he is, nor can I half the time. The other was a family we met here whose son also has HLHS. It was so good to see them, especially since it’s not as convenient for them to visit anymore. It is always nice to have people come see how we are doing, or sit and chat, like yesterday, when my lifelong best friend sat with me for hours. It helps to have some positive distraction every now and then.

Each day I get to help a little more with Beckett’s care. Obviously there are things I’m not allowed to do, but each day it feels like I get to be more and more of a mommy, taking care of my baby like normal. It feels so good to be able to do this for him, as well as help me get comfortable with what life at home will be like. I love that I get to be here all day to watch over him and care for him. He truly is such a special boy and is going to do big things in this world. I can’t wait. It is such an honor to be able to watch God’s plan unfold, and he is not done with Beckett yet. We are all privileged to watch him work, and I pray our eyes are open to his power being displayed before us. Thank you Jesus for choosing to use my son to do such a mighty work in this world.

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