“We hugged and kissed and told SJ how much we love him. He was emotional this time. He cried and cried saying no more pokies mommy. I want to go home. With each tear that fell from his eyes my heart was crushed a little more.”
‘It’s the heart! Something is wrong with our baby’s heart’ The kicking and screaming slowly stopped and he was limp and asleep.
‘Your baby doesn’t have eyes.’ What do you mean she doesn’t have eyes?! I know people are born blind, but to actually not have eyes seemed impossible to wrap my brain around.’
“After sharing concerns with my husband, I told her doctors I thought something was wrong. They blamed her blindness. I insisted it was deeper than that. She slept all the time, I had to wake her to nurse her, and I’d never seen her smile. Crazy, I know.”
‘They plopped her on my tummy, facing her daddy. I cried the happiest tears. But, my husband looked at me with the most concerned look on his face. He knew.’
“It’s 2 o’clock in the morning, my water breaks on the toilet. No contractions, no leaking. I assumed it was urine, so I went back to bed. I called the nurse line when I woke up. ‘It’s most likely just urine from the baby shifting on your bladder.’ But for the first time ever? On my due date?”
‘I sat on the line stunned. ‘There are only 34 cases ever on record. He is as rare as they come.’ I peered in at him and thought, they were wrong, somehow this was just a fluke.’
“I was anxious to make my way to the NICU. I walked into the very room our daughter had been in and instantly knew our situation was much different than before. The doctor didn’t waste a minute of my time trying to sugar coat the situation.”
‘We knew it was time to go. We wheeled Sophie down to a cooling room. We could see past her imperfections, her peeling skin and her bluish tint. To us, she was our baby and she was perfect.’
“She had so much brown, curly hair. She had her daddy’s nose and her mamma’s lips. Her perfect little lips. I wanted to kiss those lips every day.”
‘We talked about meeting all year. So many feelings were running through me. In a perfect world, they could have both been saved, but that isn’t our story.’
“It was different with them — almost as if he’s known them for ages. We would give anything to have our baby back.”
‘IT’S A BOY!,’ they said as they held him up over the sheet. She turned and looked at me. ‘That’s your baby.’ It was the most incredible moment of my life.’
“The next day I walked into our apartment building to find Evan on his knees sobbing. The doctor had called.”
‘I heard 3 things when he was finally out: ‘He’s here, he’s breathing, and he has a TON of hair!’ What a joyful moment. I say moment – because the joy only lasted that long.’
“My anxiety was high the morning of our 30-week scan, the morning our world was turned upside down. There was a lot of small talk, and then there was silence. I looked at my fiancé with tears in my eyes. ‘I knew it.’”
‘If you would’ve told me 3 months ago that my daughter’s recurrent colds would lead to heart surgery, I would have called you crazy. But that’s exactly what happened.’
“As the mother of then-2-year-old (and illness-prone) twins, I was familiar with baby colds. We used saline, humidifiers, and kept her hydrated. We suctioned when we needed to and let her sleep on an incline. But this cold was… different.”
‘He was 6 months old and only 9 pounds. I am a living nightmare. They knew it was all a tremendous f*ck up. They knew he was like this because of them.’
“I got the call around 3:30 a.m. I spent 9 months preparing for that call. 9 months worth of nights obsessively checking the volume on the phone, making sure it was charged, that it was close by, that I hadn’t somehow missed any calls. Well I got my call. Loud and clear.”
