We’re home! We actually arrived home on Friday. If you were unaware of that, and found yourself unable to enjoy the NFL games today because you were wondering if we were home, or if I was still orangutan gazing, please consider following TwoIfbyFaith on facebook. I just hadn’t found the time to get back on here!
Friday morning rounds went well, and we were home by 4:00 pm. Both boys are still spitting up, but they are all in all doing well. They stopped being contagious a while ago, we are just working on getting up to full strength. With their pace, and overall weakness, that might take weeks. We are continuing the breathing treatments 1-2 times a day as needed, and as mentioned before, are exclusively feeding via NG tube for now. The boys are still very sleepy. I know part of this is due to illness, but I also continue to believe part of it is due to the med changes. We have follow-up neuro visits scheduled, and we should begin pulling back on Sabril soon. I’m curious to see what other next steps they have in mind.
Nonetheless, we are all so grateful to be home and together. Saturday started with a nurse visit, then turned in to a lazy day at home. We ventured out to church today. We are relatively new there, so many of our seat neighbors don’t know details about the boys. There, just like anywhere I go with them in public, they are just cute twins, and strangers can’t help but comment on how well-behaved, quiet, and…sleepy…they are. But generally no one has any idea there is more to the story. Today the feeding tubes provided a clue. And led to a question, which led to a discussion. I saw sadness and heartache for the boys through the fresh eyes of a kind gentleman. And it really hit home. The last few days have been a mix of emotions. I’m thankful the boys came out of their first illness related hospitalization like fighters, yet I’m scared to death of how the winter will go. Truth be told, I’m scared fairly often. But I think it’s acknowledging that vulnerability that gives us the freedom to live each day to the fullest. I’m not frozen by fear, but I’m emboldened by it. I’m not running in fear, but I’m challenged by it. Challenged to make the most of each day, each moment. Challenged to fight for these boys. Challenged to allow my heart to wander around, also vulnerable.
“Making the decision to have a child – it’s momentous. It is to decide forever to have your heart go walking outside your body”
― Elizabeth Stone
And finally, this one should have been captioned “3 wigglers”…