It's Up to God...

Bryan and I are sitting with our sweet Samuel now. We've decided to stay at the hospital again tonight. It was a hard day for me and B, though Samuel has steadily endured it. Earlier in the day, one of the cardiologists, who isn't exactly gentle in his delivery, told us that he's very worried about Samuel and doesn't think he will be a survivor. He says Samuel is much sicker today than he was last week. He suggested we have him baptized if that's something that's important to us and said that he thinks Samuel could go quickly if he starts to go downhill. This wasn't surprising news to us given yesterday's scare.

Despite that "meeting," Bryan and I had a relatively calm and even joyful afternoon. We read to Samuel, chatted with Richard (our nurse), laughed over lunch, etc. It's kind of amazing to me when Bryan and I are genuinely able to laugh about something in these days. And yet it happens pretty often. I am thankful for the joyful moments and a funny husband.

The doctors had their weekly cath. conference this afternoon, and honestly, I had kind of forgotten about it until the same cardiologist I mentioned above wheeled his rolly chair over to Samuel's station. The doctors spent a long time discussing Samuel's case, and the conclusion was that they are out of ideas and options for Samuel. They don't really understand what's going on, and though they tossed out many ideas in the conference, there were always more reasons to not pursue a course of action than to pursue it. He mentioned ECMO (bypass machine), dialysis, MRI, CAT-scan, surgery, heart transplant, heart/lung transplant, etc, etc. They even concluded that the new option from this morning to repair his pulmonary valve in the cath lab, was based on faulty information from the echocardiogram. Essentially the doctors think they're all deadends for Samuel. This doctor told us we need to start considering how to proceed if Samuel's heart stops -- whether or not to resuscitate him. He even mentioned the possibility of taking Samuel of all the machines at some point and letting him go on his own.

Over the next hour, we spoke with several doctors who gathered around. One is our pediatric cardiologist, Dr. Videlefsky, who we like very much. He has called the hospital every day since Samuel's birth to check on us and Samuel. When I saw him coming, I just felt so bad for him. I know that sounds weird, but this situation has been truly hard on him. However, I was so glad he came to talk to us because he is so kind and gentle in his delivery and was very concerned about our well-being. He told us that he just doesn't understand what's going on with Samuel. He can't figure it out. It is so frustrating for him not to have answers for us, and he repeatedly asked us what we understood, if we had any ideas we wanted them to pursue, what our thoughts were, etc. It's not often we're asked what our thoughts regarding Samuel's care are. He pleaded with us to let him be a mediator with the cardiologists here if we have a course of care we want the docs to pursue. I think he was even teary-eyed numerous times in our conversation. I think compassion must be a really trying attribute to have when you're a doctor. It must be so painful to watch others hurt so much and then not be able to ease that pain.

His one idea is to call a doctor he knows at Stanford who "thinks outside the box." He said he doesn't want to give us false hope, but he wants to make sure no stone is unturned. He confessed that his greatest fear is that the doctors are missing something, but he doesn't think it's the case. He remarked how patient we've been and how well we've handled all of this. Another doctor in the circle, Dr. Kim, said that he hates that we're having to have these conversations, but that it's been such a pleasure to interact with us, and he doesn't know how we're doing it. It was a reminder to me that we can show God's goodness and faithfulness even to these doctors.

Anyway, the gist of all the doctors' input is this: we're at a deadend with Samuel's care. They don't have anything else to really try, and they say the course ahead is pretty clear: the doctors do not believe Samuel will survive. During one of the most terrifying conversations that a parent can ever have, Bryan and I were surprisingly peaceful. That can only be from God. I kept thinking, "Ok, it's in God's hands." And truthfully, it always has been. In essence we're in no different place than we've always been -- in God's care. It's up to God, and it always has been. So the doctors are at the end of their resources and knowledge; God is not. I don't know that God will heal Samuel, but I have no less confidence that He can. And if He does, what a way to get all the glory -- when medicine can't take credit for it. In fact, Bryan has thought for awhile now that if our Little Mystery is to get well, it will not be from medicine. We are still peaceful. We know the road ahead is likely one of hardship and pain, but we don't feel like it's written in stone. And we continue to call on God and ask for His healing and grace.

One other thing the doctor's mentioned is genetic testing for me and Bryan. They wonder if there is a connection between my two miscarriages and Samuel's condition, and they think it's important for us to explore that before we have more kids. In some ways, this was the hardest to take because it was unexpected and threatens my dream for more children. But, yet again, this is God's too. He doesn't make mistakes. And I trust Him in this as in all things.

So, God, here we are. Waiting. Samuel is Your child above all else, and our desire is that You do a miracle and heal his whole body -- his lungs, heart, kidneys, and liver. We would love for You to show Your power in this way and to draw the hearts of the doctors, nurses, RT's, and other parents to You. I'd love for You to draw the hearts of those who read these words to You. There is no other place to go with our burdens. And yet, we want what You want, and we surrender our desires to You. Samuel is Yours, and we open our hands and trust You. Carry us through these days, show us Your continuous grace. Use our story for Your greater story. We love You no matter what lies ahead. Grant us strength for each moment, and hold Samuel close to Your heart. Amen.