Chris and I were leaving one of the many ultrasounds after the oligohydramnios diagnosis. Still the kidneys looked small. Again there was no fluid. The doctor had given us a potential theory on what had happened- an obstruction that led to kidney damage. I think we needed to hear over and over again that her kidneys were damaged to really understand what that meant for our baby and our lives. We walked out of the building talking about dialysis. We had learned that dialysis for a baby is a daily undertaking. I realized that if my baby lived, she would likely daily dialysis until she was big enough to get a transplant- at age 2 at the earliest. That meant essentially we wouldn’t be leaving the house for two years. No vacations, no trips across country. I wondered if we would be able to make the 2 hour drive to my parents’ house.
People I know who have had a baby often lament how hard it is to leave the house. A night out with their partner sans baby is an unusual event. They can’t remember the last time they even stepped foot in a movie theater. When Mabel was diagnosed with Down Syndrome, we knew that she would need extra services- therapists of different specialties that would come to our house or her daycare. We looked into daycares that have worked with special needs babies and the Birth to Three program. I found a baby sling that was made for kids with Down Syndrome in mind. I looked into learning sign language and setting up a special needs trust. We knew that she’d be in leg casts for weeks and then strapped into a bulky leg brace for 23 hours a day, so I thought about what kind of clothes she could wear and whether cloth diapers would be appropriate for her and her little clubbed feet. So when Mabel was diagnosed with kidney issues, I tried to envision what I could do to prepare. This preparation was all mental, because we wouldn’t know what we were dealing with until she was born. I envisioned taking a long leave from work, giving up attending births, leaving my job entirely to care for my baby. I would be home for my baby.
I never had the opportunity to worry about when I’d ever see a movie in a theater again. It was a given that we would be pretty much homebound.
So as Chris and I were leaving that ultrasound, we wondered should we go away? Right now. We had two weeks before I was to go into the hospital. Could we make a trip happen? It was the middle of winter, so the idea of some place warm sounded blissful. I was 32 weeks pregnant with a high-risk baby, so I didn’t want to travel far and didn’t think getting on a plane was a good idea. And Chris and I had missed so much work so far, we were hesitant to take more time off. So we nixed the idea. I asked Chris in that parking lot, if our baby dies, can we go somewhere? To get away, reset and forget all this? We would go somewhere warm. So in some messed up way, if the worse thing possible happens, if our baby dies, we would have something to look forward to.
Chris and I are going to Fort Lauderdale for four days. We leave today. We plan to sit on the beach and do nothing. This was that something I am supposed to be looking forward to. I am and I’m not. We are going on our “if our baby dies” vacation. How do I look forward to that?