Anna continued to be the brave little fighter she had shown herself to be over her first two weeks. The surgery had taken nearly three hours and had been very difficult, the doctors told us. It was possible that she would always have issues with feeding and digestion, but hopefully nothing life-threatening again. She’d come off the ventilator after surgery fine, getting back on the CPAP, though at a higher concentration of oxygen. I had been surprised to learn that there even was a thing as a percentage of oxygen in the air. I thought the air was simply…air. The exact elemental makeup was lost on me. I was learning so much through this NICU experience.
Once she’d recovered from the surgery, Anna was fed more often throughout the day, instead of feeding her more at each meal. For the first few days, it looked like something was still amiss. Her belly was still hard and distended, and she still wasn’t soiling her diapers, or putting on any real weight. But then she began to adapt. She no longer seemed uncomfortable after she ate. She began to gain weight.
Over the next few days, it was thrilling to watch Anna recover from the difficulties with her digestion. She had begun to lose weight as she struggled to eat, and now the ounces were beginning to add back on. It was so wonderful to start moving forward again in her health.
Anna’s stay in the hospital truly was a roller coaster. She would come off the ventilator only to go back on it. The level of oxygen she required from the breathing machines would go up and down, sometimes more than once in a single day. So while her lung development was good, it still wasn’t what it could have been. It was hard for me to remember that as time went on. She had improved so quickly in her first days, and I had expected her to stay at that level. It was always hard when I arrived in the morning to find her back on the ventilator after a difficult night, or when I came in the evening to find that her oxygen level had been raised due to low oxygen saturation levels in her blood. It was painful to see her on those days when we took steps backward, the same way that it energized us to see her progress. I prayed for the day that she would be able to breathe entirely on her own, knowing that would be one more step toward bringing our baby home.
There was nothing I wanted like I wanted to bring Anna home with us. Every night that I returned home without her, I would wander into her nursery and daydream about the day that she came home. I would sit in the rocking chair, picturing how things should have been. I would imagine bringing Anna to her home, where she belonged. Her nursery was ready for her. Dozens of tiny outfits, outfits that were still far too big to fit on Anna, were clean and folded in her drawers or hanging in her closet. The changing table held diapers and wipes and any number of lotions and potions for keeping her skin smooth and good-smelling. The only thing missing was the baby. We missed her fiercely when we were at home. I would lay awake at night wondering if she was having a good night, or if apneas kept stealing her breath. Would she be stronger in the morning, or would she have taken a step back?
If she were home with us, I wouldn’t need to worry. I would be able to stand beside her crib, watching her sleep, knowing that she was breathing, that she was comfortable. She would wake me in the night, instead of my sleep being interrupted by an alarm reminding me to pump more breast milk for her. I would be the one comforting her in the night, instead of her nurses. I wanted that life, that motherhood, the one other mothers got. I’d already lost so much. Thanks to infertility, I’d lost the traditional conception. Thanks to my prior miscarriages, I’d lost the carefree days of pregnancy. And thanks to my water breaking at twenty-three weeks gestation, I’d lost being pregnant. I’d lost the normal delivery experience. I’d lost Anna’s first weeks of babyhood, entrusting her care to others. It felt like I’d lost the chance to be Anna’s mom. I wanted her home so that I could be her mom, so that Ben could be her father, instead of watching other people take care of our daughter.
We weren’t even the people who knew our daughter best. When we were at the hospital with her, we were at a loss to know how she was doing until someone updated us. A machine would beep, and we would look frantically for a nurse, needing to know what the noise signified. It was frequently something innocuous, but every once and a while it was serious. She had stopped breathing, which she didn’t do often, but which did happen. These alarms terrified us. It would have been so much easier if the machines simply told us what was wrong with her; instead their beeps were mysterious and confusing.
It was always a comfort for us when we could hold her. This calmed us, reassured us that she was alright. As long as we could hold her, we could believe that one day we would be normal parents, with a normal child. We could picture a day when we would take our child home, when we would be the ones to feed her and clothe her. We could picture a time when she was older, going to school, making friends with other children. This was the life we should have been able to think about from the moment we had learned that I was pregnant. Our previous losses had denied us that, and now our daughter’s prematurity and her delicate health kept us from planning for a future that might be denied to us as well.
Ben and I didn’t talk about our future as parents. We didn’t discuss topics like where she would go to school, or how we would afford to send her to college. We worried about her breathing, her eating. We worried about whether she’d ever leave the hospital. We worried about whether we’d actually be able to parent.
We didn’t talk about these serious concerns, not knowing whether she would ever come home to us. I couldn’t voice these concerns, couldn’t bear to think about them. I couldn’t face the very real possibility that our daughter would never come home. I had to keep hoping that she would recover, that we would take her home. If I stopped believing for even one second, the doubt would crush me. Perhaps it would crush Anna as well. I knew that holding on to a positive attitude would be helpful for her, knowing that her mom and dad hoped and prayed for the best. I also knew that a positive outlook might not be enough. When Ben and I were together, we generally spoke about anything but Anna. It was easier that way.
Until Ben decided that we couldn’t be in denial any longer. He was too practical, too strong when faced with the possible reality of our future. One night after dinner, when I wanted to sit on the couch and zone out to some mindless reality TV, Ben sat next to me and confiscated the remote control.
“I want to figure out what we’re going to do,” Ben said. “Just in case.”
I stiffened, knowing what he meant, and not wanting to participate. “In case what, Ben?”
“In case she doesn’t come home.”
“We need to do this, Elise. We need to be prepared.”
“We do not. We need to hope for the best.”
“Fine, we can do that now, and when we’re already shocked and grieving, we’ll have to decide what to do with her remains.”
I stood up, ready to walk out of the room, if that’s what it took to get away from this conversation. “I refuse to discuss this with you. If you feel the need to make these plans, you certainly can. But I will not be a part of it.”
“You can’t bury your head in the sand, Elise,” Ben called after me. “She could die.”
“I know that.”
“Then please help me with this. Help me plan for the worst, so that it’s done and out of the way.”
I paused on the threshold of the room, leaning my head against the doorjamb. “I can’t, Ben. I can’t begin to imagine how to face those choices. I have no idea how I would face a future without our daughter, let alone planning for that time.”
“If I make these arrangements on my own, you’ll have no say in the matter. And I will make them.”
“Fine with me. I don’t even want to know what you plan.”
“Enjoy your denial. I hope it helps you feel safe.”
He got up walked past me out of the room. I stood for a moment, numb. I didn’t want to admit that he was right, that it was best to know now what we were going to do if the worst happened. I didn’t want to admit it because I didn’t want to make those plans. I didn’t ever want to say, “This is where my daughter is buried.” Or, “Those are my daughter’s ashes.” No one wants to say those things. No one wants to make those choices.
Some of us are forced to.
I found Ben in the dining room, sitting at the table, his head in his hands. I always thought he was the strong one, and suddenly realized that he was only strong when he was in front of me. He was hurting too, hurting the same way I was. He wanted Anna home too, wanted to see her grow as much as I did. The fact that he was trying to handle practical matters didn’t mean that he had any less hope that she would be okay.
“I’m sorry,” I said after a moment. “You’re right. Let’s talk about this.”
He looked up, his eyes red. “Are you sure?”
“Yeah. Tell me what you’re thinking.”
“Okay. I talked to the grief coordinator at the hospital, and she gave me some paperwork.”
“When did you do that?”
“One day while you were pumping.”
“Did it help to talk to her?”
“The grief coordinator? Yeah, a bit.”
“I should see about talking to her too.”
“Let’s look at the paperwork she gave you.”
Ben rose from the table to retrieve the papers from his office. I sat in his place, willing myself to keep it together during this conversation. It was a hypothetical conversation. Anna was still alive, still growing and getting stronger. We were being prepared. Having these plans in place would only make things easier down the road, if the road got bumpier.
And Ben needed this. During my pregnancy, when I’d been too anxious to do much of anything, Ben had been understanding, letting me withdraw when I needed to. He’d let me do what I needed to do. I owed him the same respect.
I could help him make these plans, no matter how hard it was for me. It would be okay. Anna would be okay. She had to be.