I see, in my life, the NICU drifting away. When I think of the hospital, I no longer think of iscolettes, gowning up, wearing masks, and touching a tiny baby. I now think of Owen's recent hospital stays - keeping a toddler occupied 24hours a day while sitting in a hospital crib, keeping nurses on their toes, skipping meals because Owen is NPO and won't let me eat in front of him, skipping showers because Owen woke up early, holding a little boy down as they poke him for the millionth time, ect. In a way, I am a little sad. Although I would never want to go back to the NICU and I would NEVER want to relive those days, I find myself missing the support. I had a ton of support from the parents that were right there with their little babies. I had support from Owen's primary nurses. I even had support from the neonatologists. I was there - all. the. time. I lived in Oakland. I lived IN the NICU. The nurses sometimes had to force me to go eat or sleep - even after 6 or 7 months. I was there. I got used to the enviornment. The transition to home was hard for me. My husband didn't understand the 24/7 NICU experience. My family didn't understand the 24/7 NICU experience. Over the past two years, I have learned a new life, a life where I am the boss. A life where Owen's health and Owen's care is in my hands. I have support but not the round-the-clock care support I had in the NICU. The NICU is a different world. It affects us all. I see it affecting my thoughts so often. However, I also see it being less emotional for me as the time goes on. As the years pass, I am sure it will get easier and easier.
A Little UpdateOwen's health has been back and forth lately. The surgery I thought we had taken off the table, has come up again and is always on my mind. I want to have those nurses next to me at 2am to discuss this surgery but I don't. I have people in my life that have opinions about it but I feel like they made those opinions a year ago - when Owen was put on TPN instead of having surgery. I think that was the right choice - TPN instead of surgery. Owen was clearly not strong enough to withstand surgery without the extra nutrition support. However, he is a very different kid then he was last year. I can't help but think that the surgery might, I repeat, MIGHT be a possibility at this point. It was brought up in our last GI appointment because the summer is coming and illnesses will be less of a risk factor after surgery. I am praying but I just don't know what the right decision is. This will be in our thoughts and prayers until there is a peaceful decision.