Once the initial shock of our new reality wore off, we actually fell back into a relatively normal routine for a while. No level two ultrasounds or maternal fetal medicine specialist appointments was a welcome change. However, the time did come when we needed to have a not so routine talk with Tyler. He was VERY excited about having a little brother, so we felt like he needed to be prepared for the various potential outcomes of the pregnancy.
Tyler was only 2 1/2, so we kept it pretty simple and straight forward. We told him that his brother was sick inside mommy's belly, so it was possible that he wouldn't make it out of mommy's belly. We also let him know that there was a chance that once he was born, he may not live for long before going to heaven to be with God. It seemed he had a deeper understanding than any two year old should have of a situation like this.
Up to this point, events were unfolding and decisions were being made so quickly, we hadn’t had the time to name our son. We were driving in the car one day talking about names. Seemingly out of the blue, Lauren spoke with convincing clarity about the name she thought was perfect for him. Jonathan. It wasn’t the name of any of our parents, grandparents or anyone else I could think of in our family, so I wasn't as convinced as Lauren. Then she said, “It means gift from God.” When I decided to write this blog, I was going to make every effort to share honest experiences and feelings. So, to be honest, I initially had a hard time thinking of Jonathan as a gift from God. There was a lot of fear and probably some anger in my heart. How could he be a gift if he was either going to be taken from us before he was born or shortly thereafter? And if he lived, his body would be overwhelmed with so many issues, he would have no quality of life…or so I thought. We had already lost one daughter, so how could this pregancy be a gift given the potential paths that lay ahead for Jonathan. But instead of resisting Lauren’s idea, I supported it 100%. I knew Lauren felt strongly about the name Jonathan, so I put faith in Lauren and the idea that God had a bigger purpose for him. And that was it…Jonathan…gift from God. I'm still humbled how Lauren was able to make that decision with such confidence and certainty when it seemed hope was all but lost.
It seemed odd given his prognosis, but as weeks went by, Jonathan seemed to move more and more. It was finally time for our next level two ultrasound appointment, so we were scared, nervous and curious to learn more about Jonathan and his future. The last ultrasound showed a lower spine defect and an encephalocele on the back of his head (about where you would wear a high pony tail). Relative to the size of his small head at 17 weeks, the encephalocele was an area that covered most of the back of his skull. At 30 weeks, what would it look like now?
The day came and there we were, same maternal fetal medicine specialist, same office, yet hoping for a different result. The cold and dimly lit examination room didn't exactly inspire hope. I remember the specialist's face being as stoic as it was the last time we saw him. As the ultrasound came to an end, the specialist lowered his glasses just as he had done 13 weeks before. This time, his words didn't siphon the joy from my soul. What he said felt like a sign of our first little miracle. He couldn't find the defect in Jonathan's lower spine that he had seen just 13 weeks before. It wasn't like this was a different specialist giving us a second opinion...the same specialist could no longer see the opening that was there at 17 weeks! Just as miraculous was the encephalocele. Jonathan's head had grown, but the encephalocele remained the same size it was when he was 17 weeks old. Instead of covering most of the back of his skull, the opening was now about the size of a penny.
The ultrasound also revealed that his size indicated normal growth, and he was showing good fetal movement. Based on the amniotic levels, he was also swallowing and processing fluid normally. Of course, ultrasound images aren't exactly HD quality, but we also got to see Jonathan's face for the first time.
After some prodding, the specialist finally admitted that we were now dealing with something different. Even though the spinal defect was no longer there, and the opening in his skull was smaller than anyone anticipated, it didn't change the fact that the hydrocephalus and encephalocele created a life threatening condition. Now, it was a waiting game...if he was breathing and doing well when he was born, he'd have to be scanned to see exactly what we would be dealing with. A small amount of hope crept in, but it was still too scary to hold on to that. After the visit, we realized there were multiple outcomes we now had to consider. Would he survive the remainder of the pregnancy? If he did, would he live long enough for us to spend any time with him? If he lived, would he ever feel the love around him or have any quality of life whatsoever? What we did leave this appointment knowing, was that none of us were in control here. That job belonged to God.
It seemed we had spent the previous weeks mourning the impending loss of our son. Now it was almost like we had to also mourn the loss of things he could never do if he survived birth. My thoughts raced. What would it be like if he did survive birth? How would the life I've always known be impacted? How could we be strong enough to raise a child that wouldn't be able eat on his own, see, walk, communicate or maybe even breathe without assistance? I realize the selfish nature of questions like this, but I'm human, and was scared to death about either path. During this difficult time, the only solace I found was by praying for peace and for the strength to accept that whatever the outcome, it was His plan. Only when I stopped trying to predict or control the outcome and left it in God's hands did I feel the strongest. The feeling we were not walking alone and trusting in a bigger plan was how Lauren and I were sustained as we weathered these early storms.
With time winding down until we would meet Jonathan, there were more questions than answers. We also had the daunting task of writing a birth plan, but with so many potential outcomes, we didn't even know where to begin. Enter...Be Not Afraid.