Today is a hard day.
I slept at home last night, as usual. I went home early because the girls needed to see mommy and have mommy put them in bed. During this hour long process, Evaline broke down and told me how much she missed me and that I was the best mommy in the world. She was crying while saying this. She wanted me to sleep in bed with her (which post c-section, it’s hard to sleep in a top bunk). She was so pitiful and earnest. I tried to reassure her that it isn’t for much longer, that James should be coming home on Sunday.
This morning, I struggled with wanting to leave the house immediately and get to the hospital to see James and wanting to linger at home and spend time with the girls. Ultimately, I decided to bring them to the hospital. I figured we could all have lunch in the cafeteria and enjoy some family time together, and they could briefly visit their little brother.
When I arrived, there were at least 3 people in the room. One was dropping off and explaining our Kangaroo feeding pump. The nurse was present. Someone else poked their head in with some information (hopefully not important, since I can’t remember what it was). It was chaotic, and it only spiraled downhill from there. We took the girls to lunch. When we returned, it was time for rounds with our neonatologist, nurse, dietitian, and social worker. There was also the pulse oximetry/oxygen tank delivery person – trying to explain everything to us. The girls behaved very well overall, but it’s hard to be quiet and calm when you’re 2 and 4.
By the time 2pm rolled around, I was done. It had been 6 hours since I’d been able to pump. I was being shown all of the equipment that my son will require at home (which really isnt that much, considering). And I was holding my sweet little boy, who has basically slept for the past 48 hours due to his phenobarbital.
I am just sad today, overwhelmed, anxious. Every day, I try to remember to live in the moment and to enjoy James. His time is limited. We don’t know how limited, but we know it isn’t forever. Sometimes, I am lulled into believing that he is “getting better” – letting magical thinking seep in. Sometimes I start to think about heart surgery and all that we are facing. Sometimes I just don’t think at all.
There is nothing harder than waking up every morning and remembering that your new, beloved baby has a severe genetic disease that cannot be cured and that will take his life prematurely. I just wanted to stay in bed forever this morning, except that my sweet baby wasn’t there with me – he’s here, at the hospital. But not much longer. 36ish hours, and he will be home with the people that love him most.