Somewhere between November 30 and December 1, 2016

It's somewhere around 3am and I am wide awake. We have been in the hospital just shy of one month this time. Dan and I decided we should start taking shifts so Louis has one of us there for him 24/7. That way, we can provide consistency for him as we all work to get him through this hurdle and back home with us. 

Louis has lost a little weight this week. His body is just so worn out and working hard to gain strength after his surgery. This time around was so much more trying on his body. They decided it was best to fortify his feeds. That's a fancy way of saying they're adding powder formula to my pumped breast milk. This totally bums me out because it means I can't breast feed. And through all of this, that is the only physical thing that I have been able to do to care for him. Everything else has been in the hands of doctors, surgeons, and nurses. 

So tonight was my first night flying solo, overnight, at his bedside. He threw up his feed around midnight and I felt every muscle in my body go weak. I have only seen Louis throw up two other times in his 2.5 months; the first time was during an echo cardiogram at his cardiologist that landed us in the PICU immediately, and the second time we were calling 911. I held my breath and said Hail Mary's as fast as I could in my head while his nurse looked him over and checked his vitals. I needed her to do that because I just can't trust that I know what's going on with him when his health concerns have been so complex and I am still learning. He is fine. Nothing is wrong, except that adding the powder to his feeds makes his milk higher in calorie so it's harder to digest, and that's probably why he threw up. It turns out, throwing up is a normal thing that babies do. It doesn't always mean you should panic. I don't think I will end my panic state until Louis is old enough to talk to me and tell me what he feels. 

I wanted to share a moment I had when I was about 36 weeks pregnant (I think I don't really want to share it but I need somewhere to put it and it's tough, so grab your Kleenex). Around that time, we knew about Louis' heart condition and that he would need surgery within his first week. This was early August, there was nothing particularly unusual about the day but I remember Dan and I were both home. He was upstairs and I was sanding near the little breakfast table in our kitchen. I could feel Louis (whom we didn't know was a Louis at the time) bumping around in my belly. The doctors all said he was in the best care while he was in my belly because my body was doing all the work for him. I sat down and felt his little movements. I put my hands where I could feel him most, and I cried a big overwhelming mess. This was the first time I really let out how scared I was. Dan came running because he could hear me from upstairs. I wanted so much for Louis. I could protect him while he was in my belly but I couldn't predict what was going to happen once he arrived. I have never felt so conflicted; wanting to meet your baby but also wanting to protect him and keep him safe. Knowing I couldn't do that once he arrived was really scary. 

I felt that same fear during Louis' initial surgery. Then again, when carrying him into an ambulance. And a third time, during his second surgery that went from bad to worse as the evening hours progressed into the next morning. His second surgery lasted a long time and there were many complications. I was so afraid we wouldn't get to bring him home again. I stood in his hospital room, looking at the family photos we had taped to the walls and asking God if this was it. And then begging for this to not be it. After the surgeon talked to us, I let out that same big sobbing cry I had done when I was 36 weeks pregnant and couldn't protect my baby. Dan combed my hair while my mom held me, and I just let it out. 

I have felt empty and broken and unable to get through the day, for so many days. And then the fog lifts for a moment and somehow we muddle through to the next unbearable string of days. And perhaps the most wonderful thing is happening in the midst of all this hardship (or because of it); so much love is growing. Louis has already taught me so much selfless love.

I cannot remember what was important to me before all of this.