Day 19

Saturday, August 20, 2016

I'd rather not write today, but I think it's important for me to do so.  This morning Shannon stayed home, worried she was feeling sick, and I came in to meet a neurologist and talk about what Avery is facing.  Her hydrocephalus is becoming a bit more advanced and pretty worrisome, and a point is coming up soon to decide what to do next with her.  Technically we have an option to have them surgically insert a shunt to drain the fluids as would be done on a larger child with the same condition, but the problem with premature babies is that it is so difficult for them to heal from surgeries that significant, and living with a shunt is going to require a lot of permanent maintenance including procedures and surgeries.  It feels like the odds are really stacked against poor Avery, but she still looks so amazingly perfect to us.  The doctors feel like we should make a decision on what to do next with her within the week most likely.

For Wren, today was one of those days that you dread facing as a parent.  This caught us off guard.  We have known that the results of the infection she had were pretty hard on the lung tissue of her right lung, but they have observed the last three days through x-rays an accelerating condition of damage with the blebs in the lungs that look to be drawing most of the airflow from the ventilator and collapsing parts of the lungs or just making the lungs overall less effective.  The end result was after today's observation, Doctor Merchant gave us a call late in the day to let us know it was time to make a decision on what to do for her.  There was not a recommended path, since the options all carry a great deal of risk.  When we came in and met with Doctor Merchant (the neonatologist) and the pulmonologist as well, it became clear that the options boiled down (1) trying to insert a camera scope to get the tube into the left lung, which requires them to hit a difficult angle and requires them to insert a larger breathing tube that would fit the camera, and (2) do nothing and wait for her condition to worsen until it most likely proves fatal for her.  The pulmonologist said that by his best guess, if it continues at this rate she may have two days or so to live.  The procedure may have been her best chance at survival, but was very unlikely to be successful, and has a high chance of causing damage in the airways that would quickly be fatal.  Even if they were successfully able to get the tube into the left lung (so that the right one isn't inflated and has time to heal), they're not certain that this would provide enough oxygen to continue sustaining her body.  In short, it kind of felt like making a decision between two different ways that could very likely lead to her passing.

In the end, after consulting with the doctors and talking alone for a while, we decided to forego the procedure, worrying that it might be too aggressive, and to wait and see what happens.  I still have faith that things could somehow turn around for her, but even after having been a religiously faithful person my whole life, it is certainly difficult to not prepare for the worst.  Over the next few days, we will plan to spend as much time as we can with her.