Sweet Little Rose

While I was pregnant with my twins and Bobster was throwing dance parties in three quarters of my uterus every day, my quiet little Rosalyn was huddled at the very bottom, shuddering in fear. I could never quite pin down what she was so scared of. I had an inkling that they'd be born quite early, but I didn't imagine that she'd be born two minutes before the official limit of viability. She came into this world at twenty three weeks, six days, twenty three hours and fifty eight minutes of gestation. I could still have legally aborted her.
She was the first twin. The bigger twin. The sick twin. At three weeks old I learned that they'd had to perform five minutes of chest compression on her to revive her after birth. She was already intubated when she took her first breath.
When she was a day old she was diagnosed with Pulmonary Interstitial Emphysema. Her tender little lungs were being shredded by the pressurized air that was being pumped in to her through the ventilator that was keeping her alive. The only treatment to save her was to collapse the affected lung, paralyze her so she couldn't use it, and wait 72 hours for the tissue to repair itself. Luckily, only one lung had holes. Unluckily, the holes were pretty bad. While paralyzed, she would be given a constant drip of morphine and sedatives to help her deal with the pain and not freak out.
For four days I sang to Bobby and cried next to Rosie. Her oxygen feed crept up from 40% to 80%. I wasn't allowed to touch her. All I could see of her was part of one arm, one leg, and the top of her head. Everything lose was wrapped up in tubes, gauze, and the blankets used to balance her on her side. I didn't even see a picture of her face until she was five days old.
After the waiting period was over, they turned her back over. We waited for two days with baited breath as her collapsed lung slowly reinflated. The holes were back. We would try again.
On June thirteenth, the paralytic was administd. By eleven p.m. She was breathing 100% oxygen and her saturation had slipped down below 80%, the minimum level considerd necessary to avoid brain damage. As we were doing her cares she desaturated into the 60's. Her blood pressure dropped to 24/17. Her nurse rushed to call the doctor as I cradled her in my hands and watched her start turning grey. She was dying. I told her that it had been the greatest honor and pleasure of my life to be her mother, and I hoped she could stay, but if she needed to go I wouldn't force her to stay in a body racked with pain. I said goodbye.
This was the night Bobby's bowels ruptured open. From 11:45-2:00, the greatest neonatologist in this part of the country raced back and forth between my beautiful babies, fighting to keep them in this world. I slept that night in the waiting room, sedated with Percocet, ear plugs in my ears. When I awoke, I rushed in to see my sweet children. Bobby was black and dying. Rosie was pink and full of life. The night before i prqyed tht my babies would be the ones to make the final call whether they lived or died. I wanted them to use their agency. That morning I knew They both had made their decision. She decided to stay, at least for now.
Since then she has undergone treatment for PIE five times. The last time they put her on a heavy dose of steroids that caused her blood pressure and glucose to skyrocket. She was on fifteen different medications, including paralytics, steroids, morphine, insulin, blood pressure regulators, and caffeine. We joked that she was mixing her uppers and downers. She stopped growing.
Despite the pain, anxiety, fear, and countless brushes with death, she has perfectly and impossibly hung in there. Because of her courage, I have hung in there with her too. As she lay dying in my hands that terrible night,  I pleaded with her to fight. I promised her that as long as she was willing to fight I would fight for her and with her. I vowed that she would not have to do this alone.
She is now seven weeks old, the equivalent of thirty one weeks gestation. She is still horribly delayed in her growth, sick in her lungs, and fighting osteopenia. She is here, though, growing, breathing, fighting. In our very best case scenario she will be intubated for at least another month, hospitalized until the end of September or October.
I don't know how long she's bargained to stay with me, but I still promise her daily that her journey will not be a solitary one. I regularly get reprimanded by the doctors, nurses, and other parents for being here too often, too long. I get here at seven a.m., leave at eleven p.m. Nobody is here as much as me. They tell me that i need more balance in my life, that its not healthy to be here this long. I just smile and tell them I have a promise to keep.