Anna was four days old when I was discharged from the hospital after a five week long stay. I showed no signs of infection, and my body was making an excellent recovery from the pregnancy and birth. Of course, it had been an easier than usual birth, and a shorter than usual pregnancy. I hated the idea that Ben and I were expected to go home while our daughter stayed in the hospital, still so fragile. What kind of masochist could do such a thing, could simply walk away from a tiny, helpless newborn… It wasn’t possible. So while I was discharged home in theory, we were still at the hospital all day, except to eat and sleep.
Anna still wasn’t eating very much, and her lack of weight gain concerned me. The only reason I agreed to be discharged was that she had been taken off the ventilator, switched to a CPAP system, and I would be able to hold her before we left the hospital. If I understood our doctors correctly, the CPAP wasn’t actually giving her any oxygen, it was only making it easier for her to take in oxygen on her own.
I was so excited to hold our baby, to try kangaroo care. I had seen some of the other NICU parents do it, and I could not wait to be that close to my baby. We would be skin-to-skin, covered in a blanket to keep her temperature up. I would be able to feel her breathe, feel her heart beat. It was what I had been waiting for all these years of working toward a child.
When the nurse handed my daughter to me, I was once again struck by how small she was. Anna still weighed less than two pounds, less than my laptop. It was almost impossible to believe that something so small could survive, but she was stronger than she looked, and wasn’t going to give up on us without a fight.
She had surprised her caregivers so far with her strength. Other than the lack of weight gain, she was really doing quite well so far, all things considered. In the four weeks I had been hospitalized before Anna was born, I had been given several rounds of steroid shots, which were supposed to hasten her lung maturity. They certainly seemed to have worked. Her breathing was strong and steady, and I felt the rise and fall of her chest against me. Her body was warm against mine, and I hoped that I was sending plenty of healing into her. I bent my head to hers, inhaling deeply, taking in that baby smell. Definitely more antiseptic than baby powder right now, but as she got bigger and healthier, she’d take on those normal baby smells.
She sighed and cuddled closer to me, and tears filled my eyes.
“She knows it’s me,” I said softly.
I looked up at Ben, who wouldn’t be able to hold her for at least another day. Only one of us was allowed to hold her per day, according to the rules at our hospital, to avoid overstimulation. As much as I loved having our girl in my arms, I couldn’t wait to see her in Ben’s. The picture of my husband holding our child was solid in my mind, one of the moments I had worked so hard toward. Yes, I had also worked to have our child in my arms, but I couldn’t wait for Ben to get to experience this too.
Ben snapped a photo from his seat nearby. “You’re a natural with her.”
“Hello, Anna, my love. It’s Mommy,” I said softly. “You’re doing so well, our brave little girl.”
She really was. Her PDA had closed up in her heart, thanks to the medication the doctors had given her. Her brain bleed even looked better, though we still weren’t out of the woods. As yet, we hadn’t seen any symptoms of damage it may have caused, though many of those problems wouldn’t surface until she was much older, if they existed at all. I was starting to believe that she might pull through, as she battled each problem that assaulted her. I was continually amazed by her steps forward, from getting off the ventilator to being held without another problem popping up.
I knew that our road would still be long, that a few good days didn’t mean that we were free from bad ones. I was so happy to see her progressing. I knew that she might take steps backward, and I knew that that would be the most painful thing for me to endure. For now though, she was surging forward, healing herself.
I never wanted to let go of Anna. I wanted to hold her in my arms until she was old enough to move out and live on her own. I inhaled her scent, trying to fight through the hospital smells to my daughter’s aroma. I rested my lips against her mostly-bald head. I was ready for her to be big and strong. I was ready for her to be ready for us, ready to join our family at home.
Returning her to her isolette was agony. How was I supposed to go back to our house, all those miles away, while my baby lay here, so sick?
I had to admit that she looked comfortable in her isolette. She looked calm and happy there, nodding right off to sleep once she was settled.
Ugh, I didn’t want to leave her. I told myself it was only overnight, that I was going to go home to eat and sleep, and I’d be back in the morning, but it still felt almost impossible to leave. How had Ben done this so many times? He was so strong for us.
It was strange being at home again after all this time away. I hadn’t slept in my own bed in over a month. Oh, and the shower! I didn’t even want to think about how long it had been since I’d had a proper shower. I could have lingered in there all night. Once my shower was done, I got to put on my own clothes. I was able to eat dinner sitting at the table like a normal person. When I settled in front of the TV at the end of the night, I had over a hundred channels to choose from. It was practically heaven.
“Dinner was good,” I said to Ben as we vegged out on the couch.
“Paige brought a few things by. You’ll have to look in the freezer.”
“Oh, God bless her. We’ll have to send a thank you card.”
“We’ll have to send a thank you car,” Ben replied. “She brought a lot of food.”
“She’s the best.”
“Have you talked to her lately?”
“I haven’t talked to anyone lately. I mean, other than the emails I send when we get Anna updates.”
“You should call her.”
“Sure,” I said, realizing for the first time that I didn’t really want to see her. I didn’t want to see someone who was getting what I wanted. She was still pregnant with her son, was cruising toward her due date with zero complications, and I didn’t know if I could see that right now.
Before we went to bed, Ben called the hospital to get an update on Anna. She was doing well. No change since we’d left. Good girl.
Ben and I returned to the hospital first thing the next morning. Ben wouldn’t be able to stay long before he had to head into work, but we wanted Anna to know she was still in our thoughts, even if we weren’t with her all day. We wanted to make sure she knew how important she was to us. Anna was our tiny little world.
We arrived at the NICU and, after scrubbing our hands clean, proceeded directly to Anna’s isolette. As I got closer, I noticed the change immediately. She was back on the ventilator.
Ben and I listened together to the nurse’s report on Anna’s changes through the night. Her doctor had decided to switch back to the ventilator, and the nurse agreed to flag him down so that he could explain the decision to us. Ben had to leave for work before Anna’s doctor made it over to us. He kissed me good-bye, and then kissed his fingers and pressed them to the outside of Anna’s isolette. Ben would come back at the end of the day. I was planning to stay for a few hours, before taking a break to grab some lunch.
As I waited for Anna’s doctor to arrive, I settled in next to her isolette. She opened her eyes to tiny slits and stared over at me.
“Hello, love,” I said. “What is wrong with our girl today?”
She stared, unable to even cry with the ventilator in place. She looked so small with the ventilator tube in. It dwarfed her, making her look even more delicate. The CPAP was so much bigger, but the step forward in her health made it seem so much smaller.
I looked up to see Anna’s neonatologist, Dr. Stevens. “Thank you for coming to talk to me,” I said. “I’m concerned to see the ventilator back in.”
“When she sleeps, she has a hard time keeping her oxygen saturation up. She has apneas, periods of time when she stops breathing. I don’t feel it’s safe to keep her on the CPAP machine.
“She’s on a low oxygen setting on the ventilator,” Dr. Stevens continued. “I’m not terribly concerned about her breathing, to be honest.”
“So she is doing well.”
“She is. My main concern is her feeding and weight gain. We haven’t been able to raise her feed amounts. She seems to get uncomfortable. Her stomach becomes distended, and I believe she is in great pain. My main concern is that her digestive system is not fully developed.”
“Well, what does that mean?”
“We’re doing more tests, but we may need to operate.”
“Operate? She’s a newborn. You cannot possibly need to operate on her. She’s too small.” I paused. “Would she even survive an operation?”
“The chance that we would need to operate is quite remote at this point. I would need to be completely convinced that surgery is the only way to improve the situation. For now, we’re testing and monitoring her.”
I turned back to my daughter. She had closed her eyes again. Maybe she was sleeping. My poor baby. Not even a week old, and the doctor wanted to operate on her. She had already been through so much, and now she was facing another hurdle.