Follow up and Spring Break

 In the two days that seemed like eternity until our next appointment, we (Sterling) looked up all the papers we could find on CDH. There aren't many, and most of them contain European data, which isn't quite comparable to what is in the U.S. But, it's what we had. We poured over every paper,  and Sterling analyzed every statistic he could find. The doctor had told me that we may qualify for an experimental fetal surgery, but he needed to look into it more and call some colleagues to gather information. He had had another couple not long ago with this diagnosis but they didn't qualify. In my mind, their case must've been so severe, the surgery wouldn't have helped. I clung to that hope, that maybe ours wasn't bad enough and that's why we might qualify. Then the morning of our next appointment, in the shower - where all wise thoughts are conjured, I had the realization it was probably the opposite. Why would anyone do an experimental surgery on a case that wasn't bad enough to outweigh the risk? It would have to be a situation where the baby didn't really have a chance, so this was their only shot. And my heart sank. We went to the appointment - all of our questions that had come up over our two days of research scribbled on a piece of paper- knowing full well we wouldn't remember them once we got there. He brought us back, reviewed the information again and included a little more detail - your son has a right-sided (which from our research was worse than left) congenital diaphragmatic hernia. All of my colleagues have directed me to John's Hopkins in Baltimore. They are the only ones who will do the experimental surgery, if you qualify. We would need to do an amniocentesis, which comes with its own risks, and then set you up with them for further testing. If you don't want to go this route, you need to find a hospital with ecmo (this takes the blood out of the body, oxygenates it, and circulates it back in the body), because the baby will not be able to breathe once he's born. And here was our chance. To ask the question we needed to ask, but not really wanting the answer.......what percent chance does he have of surviving without the experimental surgery. 20%. It was like a massive blow to the chest. I don't know what I was expecting, but it wasn't this bad. He left the room to let us decide if we wanted to go ahead with the amniocentesis. We looked at each other. We had the same thought. 20%? That was it? If we did nothing, his fate seemed certain, so our choice seemed clear. We were shortly in a room with a very long needle (I don't do needles well, by the way. I don't scream or anything, just pass out). This time I held it together for and we were again going to play the waiting game. This would be the story for the rest of our journey. We would wait to hear from Hopkins. We would wait for the results of the amnio. We would wait....

On the hour drive home we decided it was time to tell our family. We still didn't have much information, but gave them what we had. Via text of course. Maybe that was impersonal but there was no way of getting through a coherent conversation that day. They all offered their love and support, withheld their thousands of questions, and had now joined the waiting game with us.

In the meantime, we had planned a spring break trip with our kids, for the first time since we had kids.  Feeling ridiculous, we asked the doctor if it was okay to travel. I don't think I will ever forget his response, "Sure! Besides this one thing, this is a completely routine pregnancy!" Maybe he was trying to make things feel better, or more normal, but it made it feel so trivial, so easy. Nothing we were currently feeling.  But life kept on, and so did we.  We made our trip to Puerto Rico.  It was good for us. The tension was lower, the kids were able to relax and play happily together on the beach, while we tried to do the same with them.  And we got a phone call, with the amnio test results, which were negative.  We breathed a huge sigh of relief and tried to soak up the last days of sun and sand and kids before coming back to reality.