Tuesday, November 19, 2013

Uncharted Waters

It goes without saying, but Julie is literally among a handful of Cystics who have undergone double lung transplant and then pregnancy. My job has taken me to NICUs around the country and as I learn about this very complex area of medicine, I am humbled. Neonates are extremely resilient in their fight to live. That being said, it is chilling as I am confronted with the complications of early term births on almost a daily basis. Julie is just under 28 weeks; a critical time for the baby's lung development. As we were looking at some research the other night around delayed cord clamping and other data around pre-term pregnancies and transplant we came across the registry for post transplant pregnancies. It is one of the oldest running studies in medicine. There were only a handful of patients (voluntary registry) that had Julie's situation. The possibilities of complications with an early term pregnancy are enough to get your attention. But to add to it the possibility and reality of rejection; It brought me to my knees. Anyone who has read this blog has seen we are very optimistic and have a "cross that bridge when it comes" attitude. That is not to say we don't get smacked in the face with reality every so often. Luckily so far we haven't been smacked at the same time. We started to have the kind of conversations we have every so often that I imagine a psychologist would be giddy over. I asked Julie about some worst case scenarios with regard to our twins and our unborn son. If she were to reject because of this pregnancy and leave earth in their young life, possibly just a few years from now, the twins would be old enough to remember her, and have to cope with losing their mother. Trust me, this isn't the first time we have had this conversation. If faced with this I asked her if she would have regrets about getting pregnant. Her answer was considerate but concise. 'Its not about that. It's about giving them life, no matter what the obstacles are,' speaking of both our twins and our unborn son. How profound that she sees it as it is. She is considerate of the trial it would be for our kids but not consumed by it. 

The following morning I told Julie I had a hard time falling asleep (partly jet lag) thinking about the risks we are knee deep in. At some point the scripture came to my mind in a still small voice: "Did I not speak peace to your mind concerning the matter?" Without telling her this detail she told me 'Sometimes I think about those things (risks to her graft or the baby) and the scripture "Did I not speak peace to your mind concerning the matter" comes back to me.' I was blown away that a scripture that helped her prior to us getting pregnant among other times was the same one that came to my mind the night before. 

We talked that night before about what life may be like for either of us if the other died. Conversations like this may seem depressing or stressful, but they are just the opposite. We all will be faced with it at some point. I believe in order to truly not worry about what you would do, and 'cross that bridge when it comes' you have to actually have a dialogue around it. We don't talk about it often, but it clearly would come up in conversation because of our situation. Before I married her I thought that I could be faced with this if I married a perfectly healthy girl; with Julie at least I knew somewhat what I was up against. The same types of conversations are had with our boys from time to time. It's amazing to see how they grasp the concept of eternity so easily. We of course do what we can to reassure them, but they are well aware at this point that we all die and we will be with each other again. Around all of this is the age old benefit risk analysis. For us, we have everything to lose if we don't go on this endeavor to have a family, especially if she lives a full life. If the worst comes, we have boys who were brought into this world in part by a fearless mother who has a will to live, and sticks to her principles amidst the strongest obstacles and personal anxiety. That is a legacy they will most definitely draw on throughout their life. You can't pick your poison, so go with your gut, ask God for some kind of confirmation and live your life.