Waiting for Monday

Everything always makes better sense in hindsight. The next few days consisted of a lot of waiting…and thinking. I had asked Dan to give me a blessing twice during the pregnancy, once after my preterm labor at 33 weeks and once right before delivery. I had asked for both of them in the hopes of hearing that everything was going to be fine with the baby and that I didn’t need to worry. Instead, I heard phrases like, “there will be minimal complications,” “Heavenly Father is aware of you,” and “you have an understanding of the plan of salvation.” At the time, not much comfort was found, but after Averi’s arrival it made complete sense.

Since meeting Dan and seeing how well he worked with Matthew (a young boy with Fragile X) and other mentally disabled people at his job in Utah, I have always felt that we would be blessed with a special child of our own. These things helped us find comfort as we tip-toed around just telling our families until the official chromosomal results came back.
As Monday drew near we started hearing more things that could be wrong with Averi. Her blood work was really off. There were lots of immature blood cells, too many white blood cells, and not enough platelets, which are used for clotting. More blood work was taken every day to ensure that her platelets were still barely high enough to not need a transfusion. There was also a murmur in her heart. These were all things that would make better sense if she had Down Syndrome.It was interesting how even the doctors weren’t convinced that she had Downs. Everyone who came to visit her said they couldn’t see it. I had to keep explaining that I only noticed it when her eyes were open, which doesn’t happen much for a newborn. One of the doctors even told us that she could have what’s called Mosaic, where only some of her cells have the extra chromosome.Finally, Monday afternoon came and Dr. Davis, another neonatologist, came into my room to tell us that the results had come back positive, Averi had Down Syndrome. We already knew, but it was good to finally have that conformation. Nurses and doctors kept hovering, waiting for us to react, but it never came. I cannot explain why, but we never really experienced anything but acceptance, and a little bit of sorrow for what she might miss out on later in life.
The next step was finding a way to tell people. Averi (by now she finally had a name) was our beautiful baby and there was so much more to her. It couldn’t go without being said but it didn’t need to be the only thing people knew about her either.

Again in hindsight, I now realize that our instant love and acceptance of her was crucial if we were going to be able to handle her medical problems that would quickly start to show up.