Bringing Home a Preemie

By Mollie Mills Sheppard
I never wanted a special needs child. There, I said it. I thought imperfect children were the worst possible outcome of pregnancy. When I became pregnant with my twins, I secretly prayed every night for two healthy, perfect children. I wondered if I could possibly totally love a child who didn't have ten fingers and ten toes and a full scholarship to the college of his or her choice. I refused second trimester genetic testing because I consider myself pro-life, but I didn't want to be put in a position where I had a choice if I knew there was something wrong because I was afraid what my choice would be.

And suddenly I was in labor. No, not at 40 weeks as I should have been, but at 21 weeks and six days. The on-call obstetrician told me both my babies were about to die, and nothing short of a miracle would stop that. All of a sudden imperfections didn't matter anymore; just save my babies. At all costs, save my babies.

My precious Aubrie was born on March 23, 2008, at 22 weeks. We were given the option of attempting to save her, and we were given the statistics. If she lived, and there was less than a 5% chance of that happening, she would undoubtedly suffer with serious lifelong disabilities. We no longer cared. Just let her live.
She lived one glorious day. She was covered in tubes and wires and plastic and love and prayer, and she was beautiful.

Through a host of miracles and diligent medical care, my sweet Dax was kept in the womb twelve precious more days. He was born on April 4, 2008, at 23 weeks and five days gestation. His chance of survival was around 15%, and his probability of serious disability if he lived was around 90%. They did not ask us this time if we wanted to resuscitate. Everyone wanted this baby to live.

Parents often get questioned on quality of life for their special needs children. If I'm being honest, I'll admit there were multiple times during Dax's eight-month NICU stay when I begged God to go ahead and take him if He was going to take him and stop his suffering, as well as mine. The NICU was not an easy road for him. He spent over 100 days on a ventilator. He had heart surgery and eye surgery and hernia surgery and g-tube surgery and he was addicted to morphine and noises hurt and touching hurt and breathing hurt and, dammit, no baby should have to go through so much pain. Yet, through it all, somehow the NICU was not a sad place. Every day he spent in the NICU was a day he lived. Every day I made that hour drive to the hospital was a day we had him on this earth with us. Selfish? Maybe. Probably. But as much as I didn't want him to die, he didn't want to die, either. With every painful procedure, with every ABG and CBG and transfusion he gave me strength, not the other way around. He smiled, he fought, he lived. His nurses and doctors became my friends and family, and the NICU became a beautiful place where there was always unconditional love and strength and beauty, even on the darkest days.

On the 241st day of our NICU stay, the night before Dax was to come home for the very first time, a neurologist arrived to go over Dax's MRI results. They were bad, and he was fairly sure it was a genetic disorder. This particularly concerned him because we had just found out two days before that I was four weeks pregnant. When he told us there was a chance the new baby could have a genetic disorder, too, and that we may want to consider abortion, my heart just stopped. What would we do? Could we go through it all again? It only took one look at Dax, hooked to his oxygen and continuous g-tube feed, to know the answer was yes. One hundred times over, yes. I would always pick you, sweet boy.

Mollie Mills Sheppard is a BCBA in Nashville, TN, and bad ass mom to a child with ASD, a premie, and a little angel who skipped her way to Heaven ahead of us all. She blogs at *Scattered* .

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