My heart broke into a million pieces on 394 this morning.
With everything going on Asher has been a champ. He has amazed me with his compassion and resilience. I’ve been so worried about him even though he has been nothing but strong, thoughtful and his beautiful, vibrant self. He energizes me with his spirit and sense of humor.
It is so hard to balance the needs of a medically fragile child and a rambunctious toddler. I have tried to make Asher feel loved, appreciated and cared for while still being available for doctors, nurses and Finn’s social and developmental needs. There is no right way to do it and I often question whether I am going to permanently damage one of my children. These boys are my life and I need them to be secure, happy and fulfilled humans.
In effort to spend more time with Asher I went home this morning to drive him to school. At first he was resistant. At this age they love routine so he said “no Mommy, Daddy brings me to school and you pick me up.” But, he finally gave in. On our way in he asked me “where do you live mommy?” I paused. My baby doesn’t know I live with him. I cannot even put into words how that felt. I assured him that I live at home with Daddy, Asher, Finnegan and Sassy. He didn’t agree. He told me that “Finn lives at the hospital and it’s really far away.” This is a special kind of hurt that is still crushing me hours later.
Today begins week 4 in the CVICU. I wish I was still counting how many weeks old my son is rather than the amount of weeks we are tied to a bed. But, that is no longer our reality and I have to accept it. Last weekend I had to take Easter photos and make small talk like my infant isn’t in the ICU. Sometimes it feels impossible to be “normal” with everything going on. I feel guilty for even trying.
We’ve officially made it longer without the BiPAP than last week. Small victories. During afternoon rounds the doctors agreed that he looks great. One even said he looks like he is doing “better” on straight CPAP. We talked next steps and timing which are all sort of relative to what Finn wants to do. Same thing as always. Breathe, eat, go home. The doctors here would like us to be evaluated weekly by Dr. Johnson. Obviously, that isn’t a positive sign since we were hoping after last Friday to never see him again. Transplant is a real possibility and I am happy they are monitoring Finn so closely. Once again, I have to surrender to this reality.
Dr. Carter, cardiologist, said to plan on another 4-6 weeks and that is “best case scenario.” Ugh, gut punch. I knew it deep down, but living like this for another month or longer seems impossible today. This afternoon Finn seems great and barely is acting like a sick baby, but we know that can change in an instant.
I want to take my sweet baby home or even just for a walk. I want to pick him up without the help of nurses and setting off alarms. I want Asher to see that he still lives with us. It would be so nice to sleep in my own bed or cuddle up and watch a movie with my husband. I know it’s not our reality right now and once again I have to accept that. I will continue to be strong and do my best to hold it together for my boys as best I can. I don’t have a choice.