It’s hard to believe that almost a month has passed since my last update. The month saw everything from training on home equipment and rooming in at the hospital with Ren, to discharge setbacks due to a 3 days touch and go episode for reasons no one can identify. Well, after all the ups and downs we finally busted Ren out of the NICU on Tuesday. We have been home for 5 days and although it is a lot of work and emotionally trying, it is a world away from hospital living and we have cherished every moment. At one point, our only wish for the future with Ren was just to get him home and we have done just that; when you are dealing with such severe health concerns, you find yourself hoping for things that 99% of parents take for granted.

The joy that has come with being home has not come without a price. Having a revolving door of nurses and various types of social workers in your private life is an uncomfortable situation, no matter how god of an attitude you have about it. From attempting to get new nurses (currently the count is 7 different nurses in 5 days) familiar with Ren and at a level that they are able to help care for him, to staying on a strict schedule with his feedings, medications, and various treatments, the days are jam packed and exhausting. We also had our first outing for a doctor’s appointment which led to a brush with a return to the hospital. When Ren was struggling during the appointment and required oxygen, the doctor was very close to calling EMS and sending us to the emergency department at Children’s. Luckily it didn’t come to this, but we learned just how fragile Ren is and how simple things like a short car ride can tax his body, despite all his support equipment and nursing staff that goes where we go, whenever they are on duty. From 2pm-9pm we have no one else here, but outside of those hours there is usually someone here to help if needed. Tonight however, we will be on our own bc the staffing company is unable to find anyone for the night shift. It is going to be an interesting night. Alarms are sounding and Ren is upset, so I’ve gotta go. Thanks for checking in on our little guy.