After a few days of living in a very small room on the 6th floor of Seattle Children’s Hospital, it began to feel somewhat normal. It felt a little like college; you move into your room and have less space than you could have ever imagined, your bed is uncomfortable and you have a communal bathroom that you have to wait in line for, and it all feels so foreign and you don’t know where anything is and then after a couple of days it’s like you have never lived anywhere else. We had quickly become friendly with the couple in the room next door to us, we knew all of the unit coordinators that let us into the NICU a dozen times a day, and other parents started to look familiar as we gave each other knowing looks as we walked in and out of the NICU each morning. We would get up and showered and go down to Luna Bell’s room in time for the daily rounding of at least 4 doctors (attending and residents), a respiratory therapist, a nutritionist, a pharmacist, and Luna Bell’s nurse of the day. It was a well choreographed run down of her stats from the day and night before, the results of any tests that were done, what they were hoping for that day, changes to respiratory support or medication or feeds, and then an opportunity for Kevin and I to ask questions. Being a part of this was intimidating, but probably the most sure I felt all day. Because there was a bit of news, both good and bad, and then a plan. I thrive on having a plan, even if it doesn’t go exactly as planned.

Spending the days sitting next to her bed; falling asleep in a chair or standing up, ordering food to be delivered to the NICU floor so we didn’t have to be far from her, pumping breast milk, talking to the nurses, doctors, and social workers who helped us navigate everything that comes with having a sick baby. Every time my little girl woke up or moved or when it was time to change her diaper and take her vitals, we were there. Changing her diaper was pretty much the only thing we could do for her, so we jumped at the chance. At this point, I hadn’t even held my daughter in my arms yet. I would hold her tiny hand. Put my hand on her legs or chest or head, but I still hadn’t held her like every other mother had been able to do from the moment their babies were born. My arms ached for her. After carrying her everywhere for 34 weeks, not being able to even pick her up was killing me.

After a week of Kevin and I spending the nights together in the hospital, it was time for us to give up our room with the larger bed to a mother who had a c-section as well and a couple who wanted to be close to their newborn. Kevin went home that weekend and I moved to a smaller room. I would be alone that night. After spending the day with our little girl, Kevin helped me get settled in my new little room. After many hugs and kisses he made his way home. I stayed with Luna Bell until around 11pm and then made my way back to my bed. I was starving-as most breast feeding or pumping woman are, pretty much all of the time- so I hit up the vending machine near the parent rooms and made myself a little bed picnic. As I ate and texted Kevin and tried to find something distracting on the small tv in my room, the emotions and reality of the past week began to hit me. First a little bit, then like a freight train. I began to cry like I had never cried before. I cried for the emotion of finally becoming a mother at the age of nearly 45, the fear that I was pushing down so that I could remain calm around my daughter, the pain that comes with having a c-section, very swollen legs and feet and not keeping off my feet like I should have been, the uncertainty that I was feeling every time a doctor or nurse would say the word “months”. I was terrified. My daughter needed to get well. She needed her lungs to heal so she could breath on her own. She needed all of these things and I couldn’t do anything about it, except hold her hand, talk to her, sing to her and love her. My heart was breaking and I was breaking a little too. As the sobs tore at my body and the tears spilled down my cheeks onto the bed picnic I had made for myself, I let it all go. I let it go for now, because tomorrow I was going to get up and do it all again. I was going to hear about how well she was doing, or not and what the plan was for the next 24 hours. I was going to sit in that room and give Luna Bell everything I had so that she would have the strength to heal and I was going to be back in this room at the end of the day and try to heal and rest and sleep. This new life was hitting me hard and real, but it was what we had to do for now. This was the NICU life.

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