When Ben and I arrived to see Anna on the morning of her fifteenth day of life, it was clear that things weren’t right. Her face was scrunched up, and it looked like she was trying to cry. The worst part of her condition, emotionally, was that she couldn’t cry. She wanted to, the effort was there, but no sound would come out. She was clearly upset, but expressing that was near impossible for her.
Dr. Stevens was waiting for us at Anna’s isolette. He gave us time to say hello to our baby, then escorted us to his office. This couldn’t possibly be good news. He would push for surgery now, I knew. We’d put off a possible operation on her bowels, hoping that once she grew a bit and got a little stronger, her body would solve itself, or at least she’d be strong enough to better handle the surgery.
“It looks like your daughter has some tears in her intestines,” Dr. Stevens said. “We need to go in and remove a section of them, so that her digestion can function properly.”
I cried out softly, and grabbed Ben’s arm. The idea of our tiny girl going through sedation and surgery was terrifying. I had heard too many stories of adults who didn’t come out of anesthesia, or surgeries where something went wrong. I couldn’t bear the idea of putting our baby through that.
“Are you sure it’s safe?” Ben asked after a minute or so of silence.
He put his hand over mine. I saw his forehead crease with worry, and knew that he was trying to stay calm, probably for my sake, but he was as scared as I was. Surgery wasn’t something to take lightly, even on a healthy adult. Anna was far from healthy, and devastatingly far from being, well, grown. At barely over two weeks old, she still wasn’t supposed to be born for almost eleven full weeks. Imagining her going through major surgery was terrifying.
“The surgery is safe enough,” Dr. Stevens replied, which wasn’t comforting in the least. “If she doesn’t have the surgery, she won’t be able to eat.”
“What’s the most serious risk from the surgery?”
“Infection,” Dr. Stevens replied. “While her breathing is strong now, she may have some difficulty coming off the ventilator after the anesthesia, though I don’t necessarily see that being an issue for her as she has been doing well on the CPAP.”
“How long will the surgery take?”
“It will depend on how extensive the damage is, and I won’t know that until we get inside. I would estimate two hours.”
“Can we stay with her?”
“No. You can be with her in the recovery room.”
“And after this surgery, she’ll be okay?” I asked. “She’ll be out of the woods? No more problems?”
“Well, she’ll certainly be better off, and it will hopefully be the last time we deal with this particular problem. I can’t say that she won’t have other problems.” He paused. “Mr. and Mrs. Heller, I sincerely believe that this is your daughter’s only chance. And it needs to be done. We would like to do the surgery this afternoon.”
I didn’t even have time to research this, to see if there was another option. What if there was some way to fix her without surgery? Surely, the doctors would have explored every option, but that wouldn’t keep me from wondering about the what ifs, should the surgery go wrong.
I looked up at Ben, who looked as lost as I felt. How were we expected to agree to this? If we didn’t agree to the surgery, she wouldn’t live very much longer, the neonatologist had made that clear, but the surgery could kill her too. Was it better to let her go through the difficulty of the surgery in the hope that it would be successful, or to let our girl go, without putting her through that?
“Can we have a moment?” Ben asked.
Dr. Stevens nodded, and Ben and I returned to Anna’s isolette. She still seemed to be struggling with the discomfort. We were able to convince the nurse to let Ben hold Anna anyway, fearful that this was our last chance, and knowing that sometimes being held by a parent could help calm or heal a sick preemie. Ben snuggled up with her, skin-to-skin, under the blanket. The sight of my husband holding our daughter brought tears to my eyes every time I saw it. This was what Ben and I had worked for for so long, and I wasn’t ready to give up yet.
“God, this is hard,” Ben said angrily, tears running unchecked down his cheeks. “It wasn’t supposed to be like this.”
“We have to do the surgery,” I said. “I want to fight for more time.”
“Me too,” he replied. “I want to try to bring her home.”
“She’s a tough little girl. She’ll pull through,” I said with false confidence. I was going to fake it until I made it on this one. If I said she’d be okay enough, I’d believe she’d be okay, and then she would be okay.
I kissed the top of our daughter’s head and went to find Dr. Stevens to authorize the surgery while Ben got more time with Anna. After I signed the paperwork, I walked outside so that I could have some time to myself, to clear my head.
The April day was cold, too cold for spring, still holding onto the winter chill. I pulled my coat tighter around me. It was a maternity coat, bought because I was supposed to be huge now, settling into my third trimester. I was close to my pre-pregnancy weight, so the coat bagged around me. I was supposed to have my daughter in me still. The extra space in my coat was meant to hold her, to keep her safe and warm. Instead, she spent her days in a plastic box, holding on to her tenuous life, and the coat was empty, reminding me of what had already lost, and we could lose still. In a few hours, a doctor would cut open her abdomen and remove part of her body.
How did we even get here? After everything that we had gone through to create Anna, how did we end up having to make decisions that would dictate whether she lived or died? Surely we had been through enough. Surely we had earned an easier road from here. If we lost our girl, after all this, where would we be? Would we have the strength to try again, or was this it? Was Anna our only chance at parenthood?
I needed a crystal ball, so that I could see what our future held. If this was our only chance, we needed every day we could get with her. I didn’t want to miss one moment of her life, however short it might be.
I needed to quit my job, I realized.
I knew without a doubt that I would regret every second away from my daughter. As we prepared to let a team of doctors perform risky surgery on her tiny body, I knew that nothing could keep me away from her. Being in the hospital at Anna’s bedside was the only place I wanted to be. Thanks to my month on hospital bedrest, I only had six weeks of FMLA leave left, and while I knew that those six weeks could mean a world of difference to us, and to Anna, I didn’t see myself ever being ready to leave her. I knew that I would never see her as anything but the fragile baby she was now.
I returned to the NICU, where Anna was being settled back into her isolette. Ben stood next to her, watching to make sure she was comfortable. She certainly seemed to have calmed down since we’d arrived. I was sure she understood when Ben and I were with her, and that it calmed her to have us close by.
I stepped behind Ben, putting my hand on his shoulder. He turned to face me, his face streaked with tears, his eyes red and swollen.
“I signed the paperwork,” I said. “Dr. Stevens said that they’ll do the surgery at one o’clock.”
“It’s the right thing to do,” Ben said.
“I think so.”
I felt that we were trying to talk ourselves into the decision we had already made. We were both so scared of losing our daughter. For the first time, we both realized how close we were to that reality.
Anna had fallen asleep in her isolette. I hoped she was sleeping comfortably. Soon she would be woken up to prep her for surgery. I knew she would remember none of this, and I wanted to believe that she had no idea things were wrong, or how serious the rest of the day would be. I wanted her to have an easy morning, to rest up for the fight ahead.