It’s amazing the difference in how I feel this time after coming home from the hospital compared to after we came home the first time. I’m not walking around in a blind panic.
The first time, I was shell-shocked, grieving, terrified of the future and all that James’ condition implied for it. I was still navigating how to take care of an infant again as well as one with special needs. I couldn’t fathom the thought of how difficult our lives were about to truly become.
This time, I have had some sort of breakthrough.
I can do this. Whatever this winds up being, I am equal to the task. It isn’t the life I would’ve picked for myself or my son or my daughters, but it is the life I have. And I am capable of handling it. Yes, things will be different. But the things that matter – my husband, my daughters, my loving and supportive family, my friends – they are not different. They are still there and will continue to be there.
Last night, I spoke with a mother of a baby with T13. He takes medications 13 times a day. I was floored. I thought the 9 medications that I give James twice a day was hard enough, but 13 times a day! It reminded me to be grateful for even the small things. Life can always be harder, someone is always dealing with something harder than I am.
Also, I realized at some point last night that I am physically blessed. I am healthy, I don’t have any chronic diseases, all 4 limbs work. I can take care of James physically and emotionally. I can be here for him and carry him when he can’t carry himself.
I am so much calmer than I was even knowing that we could be facing James’ death in the next days, weeks, or months. I have chosen not to focus on that and to instead focus on the hope that he will surprise his doctors. What is life without hope? Why get up in the morning if I’ve given up on James? He has made it this far.
Another part of the breakthrough has been the learning curve. I watched the NICU and PICU nurses while I was there with James, every single day. I watched how they handled his problems, what tools they used, when they were alarmed and when they were not. As a result, I feel better equipped to care for James at home.
He had a scary episode this morning. I think it was spit-up/reflux. He was lying on his side, and I noticed a little spit up in his mouth. I suctioned his mouth a little and then sat him up. For no reason that I could see, he suddenly became very pale, weak, and cyanotic. His breathing dramatically slowed. His sats dropped on the pulse ox. I went through the steps to determine the cause of his drop and to help him. Eventually, we solved the problem, and he responded, but it did take a while for him to reach his baseline.
When it was happening, I thought to myself, “this could be it. He could die right now.” And as terrible as the feeling was, I wasn’t scared. I knew what to do to help him, and I did it. That is all that Jim and I can do – everything we can to help him, and then when the time comes, let him go.
After my DNR post, I’ve done a lot of soul searching, and I wanted to clarify some things. At this time, he has been declined for cardiothoracic surgery. His heart is the thing affecting him most at this point in his life. He is being medically treated with diuretics and other medications to help control his heart failure. Some babies are successful for a good while on these medications (weeks to months). It is possible that his heart failure could be controlled long enough for him to gain weight and become a surgical candidate.
We have closed no doors for James. We are treating him as aggressively as the cardiologist recommends for his heart failure. The surgery decision is not ours to make, so at this time, we are doing everything we can at home. If James surprises everyone and does well with his medications and weight gain, then we will revisit all decisions we have made for him. Nothing is written in stone. I will continue to advocate for my son based on what he tells me he needs and wants. I will continue to do everything I can for him to give him the best life possible.
Because I am capable of doing this.