Carly delivered a tiny 1lb 12 oz girl (794 grams). The parents named her Sophie. Measured dead to toe, she was about the length of a baby squirrel. Before she was well enough to come home, she spent months as a micro-preemie in the hospital's Level 3 NICU (Neo-Natal Intensive Care Unit). (A micro-preemie baby is one that is born before 28 weeks of gestation and weighs less than 1000 grams.) Sophie had met the first challenge – surviving birth.
Following Sophie's birth, Carly was anxious to see her for the first time but was still in bed with tubes and IV (intravenous) lines attached. Her nurse removed these and helped her adjust as she stood up after being bedridden a week. After a shower, she walked down to the NICU to see her daughter.
She knew this would not be an ordinary nursery visit, and this is what she saw. It was, of course, as alarming as it was beautiful to behold. Sophie and other NICU babies had one dedicated nurse round the clock. Sophie was still on a ventilator until a heart valve closed adequately. Sophie's heart rate would plunge periodically and set off an alarm, and a nurse would pat her back to restore it. They were awaiting the results of an ultrasound test on Sophie's head. It was a sensory overload for Carly.
It would be a week or more before Carly could hold her child. Now, the goal was to keep Sophie as quiet and undisturbed as possible. When overstimulated, NICU babies tired more easily and had more problems.
"This is the best place for Sophie to be," she told herself.
Intellectually though, it is one thing for a new mother to understand what is going on and why. Still, there were times when Carly broke down crying, watching it all. The staff is excellent, dedicated, and well-trained. It was not simply a job for the medical staff, but a labor of love, truly. The passion, attention and care was deeply touching.
Two days later, Carly went home. Carly returned to the NICU every day, and with the help of a lactation nurse, learned to pump and store her breast milk. Five (5) days after birth, Sophie took the reserved milk administered through a tube. The first ultrasound came back negative – hooray! It would be done again in seven (7) days and then once more during what was the danger period for brain bleeds.
Carly experienced the joy and thrill of motherhood when she could hold her baby in her arms each day. Sophie continued to feed on Carly's reserved milk. Her digestion system started functioning normally, and the endless diaper-change routine was underway. Her diapers (pictured here) are likely some of the smallest in the world.
During the weeks ahead, Sophie would face a series of advancements. She gained weight, her heart valve closed properly, and she could tolerate more than one (1) sensory input at a time.
But she also experienced declines, including deficient oxygen levels, low heart rates, a lung infection, and two (2) blood transfusions. Carly and family members eventually weaned themselves off "monitor watching," and no one was unduly alarmed whenever something beeped or displayed an abnormality. It was better to let the doctors and nurses watch the data and focus their attention and love calmly on Sophie, this beautiful, miracle infant.
After three (3) months in the NICU, Sophie went home with her monitor. The family received CPR (cardiopulmonary resuscitation) training before discharge. Two months later, Sophie had a stroke. A brain scan showed a thinning of white matter in Sophie's brain, which could be a sign of physical and mental disabilities. The family began looking for specialists who could care for her medical needs and help with her development.
Eventually, Carly had Sophie tested again. Standing in a hallway with the test results in his hand, the neurologist said that her daughter would be a "vegetable." Carly was shocked at the coldness of his delivery, the choice of his words and that he delivered his message to her in a public place. She asked why he had not invited her to his office, and his blunt response was, "I gave you the results," as he walked away.
Fearful of the uncertainty and loving in their certainty, Carly and her family decided they were not giving. There had to be a better outcome. Unbeknownst to them at the time, Sophie did not give up either. Together, they began an epic journey.
*Please note that the names in this story were changed to protect the author's privacy and family.
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