Some days are hard.
There’s no bad news, nothing to worry about. Nothing has changed. Please do not worry.
It’s just hard to be positive sometimes. As much good news as we have had, my doctors remind me that there is still no way to predict what amount of lung development Sam will have at birth, and fatal pulmonary hypoplasia is still a very real possibility. We are still preparing for both the best and the worst case scenarios.
I am still waiting on answers regarding arrangements in our worst case scenario. If that occurs, we would be so proud if our son could be a donor and go on to help others. We are not sure if that is a possibility due to his size and condition. It’s likely any donation would be for research and not for transplant, but knowing how many lives that could someday help to save, it’s something I would be very proud for him to do.
Here is an article I love, with links to additional resources on neonatal organ donation. I wish more people would consider this option.
The nursing staff, while usually a minor annoyance, is what puts me over the edge most of the time. I’d estimate 20 different day nurses in 30 days and just as many different night nurses, all with their own ideas on what my schedule should look like and none with the ability to properly read a chart.
Most days I put on my happy face, because I want to show everyone that they are appreciated. I appreciate my doctors and nurses that do really take such good care of us despite minor annoyances. I appreciate the coworkers, friends and family that have gone out of their way to offer help and have picked everything up where I left off. I appreciate the kind words and prayers because they really do get me through every day.
But it’s ok for me to still have a hard day once in a while. Because of unfamiliar nurses having their own agendas, I’m a bit sleep deprived today. I’m sure I’ll feel better after a little nap.
Dan and Wes are coming to visit this afternoon. We are going to have popcorn and watch a movie, and I couldn’t be more excited to spend some time with my family today. Sam continues to exceed doctors expectations, and my body continues to be strong enough to support him. There’s really nothing more I could ask for. Today will be a good day in the end…after that nap of course 😴