TAYLOR at birth (Perez family photo).

September was NICU Awareness month and although this article is a little late, I would still like to share my experience in the NICU.  NICU stands for Neonatal Intensive Care Unit and it is a place like no other, offering a life support system for the tiniest and sickest babies upon entry into this world.   Whether a baby is born early (called ‘pre-term’ or premature), or born full term with an illness or a medical condition that requires intensive care, the NICU is where babies reside until they are well enough to be moved to another unit or sent home with their parents.

The NICU is best described as a quiet, darkened room filled with incubators, monitors, ventilators, and other necessary machines and lifesaving equipment.  The intent is to simulate a “womb-like” environment so that the babies are not disturbed or agitated.  But it is a hospital and there’s always the constant sound of monitor alarms beeping, and medical staff moving x-ray machines in and out of the unit, moving and poking the babies to run tests and simply talking quietly about their patients.

The NICU is staffed with many specialists, each, an integral part of making sure the baby survives and thrives.  The respiratory therapists makes sure that each baby can breathe, either on their own or with the help of a machine.  A phlebotomist starts IV’s, which deliver vital medicines, nutrients, and other supplements, needed to grow, and thrive.  They also draw blood from the tiny patients, sometimes just a prick on the heel, other times, through the IV.  The NICU Nurse and the doctor, referred to as the Neonatologist, both specialize in caring for premature and sick babies, work tirelessly using their knowledge and skill to care for their tiny patients.

I know this because my daughter Taylor was born at 25 weeks into my pregnancy.  She weighed only 1 lb. 6.5 oz. and spent the first 105 days of her life in the NICU, fighting to survive.  My husband and I were unexpectedly thrown into a world filled with tiny, sick babies, trying to beat the odds, literally second by second, with parents struggling to make sense of “how they ended up in the NICU.”   Some were grieving, some were absent and some, you could find by their babies’ side throughout the day and night, praying or whispering loving words to their baby, hoping to offer some sort of solace.

From the moment of her arrival, she was intubated so she could breathe, had an IV to deliver lifesaving meds, had hourly skin pricks to collect blood and her eyes were covered to shield them from the light therapy used to treat newborn jaundice, all while surrounded by the warmth of her incubator, a simulation of being in the womb.    She was delivered via C-Section, so I was not able to see or visit my newly-born daughter until the next day, and I was shocked to see how small she was.

The hospital provided me with Polaroid photos after she was born, and, of course, from that photo, she looked normal size.   But, in reality, she was the tiniest baby I had ever laid eyes on, in fact, the top of her head fit in the inside of my palm, about three inches in diameter and her foot was as long as my pinky finger.  I had been unable to touch or hold her until 11 days after her birth, which was Father’s Day (and my husband’s birthday).  That day, they were scheduled to change her incubator, which allowed only one parent the chance to hold her for a very brief time and I was the lucky one.    Taking her out of the incubator was an enormous feat which took the respiratory therapist and a few nurses to collectively gather all of her connected cables and tubes, while they carefully picked her up and placed her on my bare skin, a therapeutic technique referred to as kangaroo care; with the emphasis on skin to skin contact.   Holding my daughter for the first time overwhelmed me because she was so fragile and delicate, and frankly, I was scared that I would harm her, but once she was safely placed on my skin, I was comforted by her touch.

Each day brought new challenges, sometimes taking one step forward and two steps backward.   Among the challenges she faced was the ability to breathe on her own, without the help of the ventilator and oxygen, avoiding brain bleeds, which is common in low birth weight babies, Retinopathy of Prematurity (ROP) or blindness which can occur if the oxygen levels aren’t regulated properly, causing the retina to detach leading to blindness and lastly, the ability to drink milk from a bottle.

These challenges were followed by small and large victories, as well as a few setbacks, including daily weight gain/loss and the ability of her intestines to tolerate the breast milk while sometimes rejecting it.    Some of the large victories included; being weaned off the ventilator as her source of oxygen with the ability to breathe on her own, the ability to learn how to suck, swallow and breathe so she could get her nutrients from a bottle and not a feeding tube and her body’s ability to correct the brain bleed and the Retinopathy of Prematurity that she experienced.

The next four months were a roller coaster ride of emotions and, luckily, I was able to be in the NICU every day, spending the majority of each day, sitting next to the incubator, from sun up until late into the evening, never missing a day;  talking, reading and singing to my baby girl,  as much as I could.

Among the ups and downs we experienced during our time in the NICU, we had great support from the medical staff and the NICU parent support group called Good Beginnings.  Each played an essential part in our lives, helping us through an extremely difficult time, offering support, comfort, and awareness about the NICU and the process called prematurity.   So, the next time you hear that a baby is born prematurely, remember the struggles and challenges the baby and the parents will experience as they enter the NICU and the tremendous support system awaiting their arrival.

“Am’s View” by Andrea Palladino Perez appears on alternate Sundays.