In November of 2017, the March of Dimes released their organization’s annual report card for premature births in the United States. The report showed that; once again, while other racial demographics saw a slight decrease in the number of preterm births, black women experienced an increase of 1%, making the rate of black preterm births an astonishing 49% higher than all other groups.
Before I had my son, I was completely unaware of this data. Obviously, I knew that premature labor could happen to anyone, but I never imagined that I would have anything other than the average maternity experience of routine morning sickness, insane cravings, and a Pinterest-worthy maternity photoshoot. For me, being pregnant meant everything to me. I felt that I had achieved not only my greatest dream, but that I had reached my fullest potential as a woman. Knowing that I had a tiny human growing inside of me made me the happiest I had ever been, and it showed in every selfie I took while affectionately holding my growing belly.
By my twenty-third week of pregnancy; however, I would find myself not only becoming part of a growing statistic, but also find my faith in God put to the ultimate test. The morning of November 7th, 2017 was ironically set to be my final day of jury duty for the double murder trial of the State of Texas vs Chiron Francis. Instead of making that last trip to the Fort Bend County Courthouse to partake in the sentencing phase, I awoke to excruciating pain in my abdomen with drops of blood leaking from between my legs. I remember crying out to my fiancé, Aaron, horrified. Frantically, he drove me to the emergency room where we met my OB-GYN several minutes later. I will never forget the look on her face after she assessed me and said: “Your baby is coming, and I don’t have the resources to help you. I’m putting in orders for a transfer.” Thirty minutes later, my fiancé and I were separated as I was life-flighted from Rosenberg to Children’s Memorial Hermann Hospital in the Texas Medical Center. As we traversed, I could feel my son anxiously squirming about within every moment. With every squirm, I felt comforted in knowing that he was still alive, and I silently prayed repeatedly to God, “Please protect my baby.” When I arrived at the new facility, I kept holding on to the hope that the doctors would be able to pause the arrival of my son. That they’d put me on bed-rest for the remainder of my pregnancy and that everything would be okay. But in the evening hours of November 10th, I knew that something wasn’t right. Contractions came closer together, and; despite every nurse telling me that I was just overreacting and that it wasn’t time, I knew that my baby was coming. And I was right.
On Veteran’s Day, November 11th, 2017 at 5:39 AM, Aries Reign Williams was born at 23 weeks and 5 days, weighing only 1 pound and 11 ounces. I don’t remember much from the delivery, but the one thing that I vividly recall is seeing his tiny body and his black, almond shaped eyes looking deep into my soul. Later that day, I got to see him in his isolette. He looked like a little angelic form of Sleeping Beauty amongst the breathing tube, wires, and IVs. He was engulfed by these foreign entities, yet I wasn’t allowed to even touch him, and that broke my spirit quite a bit. All I wanted was to hold him; protect him from any pain that he might’ve been feeling. But I couldn’t. In that moment, we were so close, and yet still worlds apart from one another.
The following day, Aries’ nurse practitioner came to visit my room and delivered some heartbreaking news. She did a head ultrasound on Aries extremely early based on her gut instinct from his lab results, and; as she suspected, something was indeed wrong. Aries had Grade 3 and Grade 4 Intraventricular Hemorrhages (“brain bleeds”). In addition to that diagnosis, he also had an open Patent Ductus Arteriosus (“PDA”) that was making it very difficult for him to breath independently. My husband and I took this news incredibly hard. Then, on the day of my discharge from the hospital, we were given even more devastating news by one of the NICU doctors: Aries had only a 20% chance to live, and he would be given the label, “failure to thrive” because babies weighing as less as he did with as many health issues as he had frequently didn’t make it beyond two weeks. According to him, each day of life for Aries added on roughly 1% survivability to these odds. Once the doctor left, I looked at our son and squeezed my husband’s hand, whispering the words that would become his mantra. “In this room, you will hear many things from many different people. Don’t listen to what they say, Aries. Just keep fighting.”
The next 150 days following Aries’ birth would be a test of our faith in God. From Aries’ diagnosis of hydrocephalus (“cerebrospinal fluid on the brain”) to three major brain surgeries and one heart surgery, we as a family endured the rollercoaster ride of the NICU experience through prayer and faith. And, despite what the doctors said, God proved time and time again that He had blessed us with a resilient child. When the NICU team believed that Aries couldn’t gain weight, he proved them wrong with gains as high as 100 grams a day. When they said that he needed to remain on a nasogastric feeding tube, he rebelliously removed it himself to show that he would be just fine without it. It is because of this fighting spirit that he earned his moniker as “the feistiest baby in the NICU” and; simultaneously, initiating the “Aries Strong” movement on social media. People originating from all ethnic origins, religious faiths, and geographical locations came together in prayer for Aries while he was in the NICU. God also moved through these people to send encouraging messages to my husband and I during our lowest moments as well as gifts of prayer blankets, books, cards, clothing, parking tokens, and so much more to bless our family with. There was even a woman from the state of Louisiana who made a trip to the Western Wall of Jerusalem, placed Aries’ name inside of a crack amongst the wall, and prayed for him to thrive.
By the time Aries graduated from his Level IV NICU, he weighed approximately twelve pounds; a feat that he wasn’t expected to accomplish until well after his first birthday. When you look at him today, you would never know that he is a micropreemie as he outweighs even term babies in his age group. Were it not for his surgical scar, you’d never know that he had a ventriculoperitoneal (VP) shunt to treat his hydrocephalus condition, for he continues to meet all his developmental milestones right on time. To this day, he remains as feisty as ever, happily bringing joy to all who encounter him – especially his father and me.
With that being said, Aries’ life is just beginning as he is presently 7 months actual and 3 months adjusted in age. With intensive occupational, physical, and speech therapies several times per week, and routine visits to his high-risk pediatricians and neurodevelopment doctor, Aries, has quite the road ahead of him, but I know in my heart that through the power of faith and prayer, he will continue to defy the odds just like he already has.
In retrospect of my NICU journey, my advice to any NICU parent is pretty straightforward:
Stay true to your faith, and remember to keep yourself and your family covered with prayer.
Understand the importance of self-care. If you aren’t taking adequate care of yourself, you will render yourself ill-equipped to care for your little one. It’s okay to take a day from the NICU to rejuvenate yourself.
Only bring about positive energy when interacting with your baby. When you walk through that door, drop the negativity at the doorway. Babies can sense energy far better than we give them credit for, and with NICU babies it is especially important that we provide them with an abundance of optimism. The more positive your energy is, the more they will become a mirror image of it.
Seek out support and surround yourself with those who are strong in their convictions or share similar experiences to you. If your NICU has a support group for parents – join it. If not, start your own, or seek out other NICU parents via social media. I actually found My Predestined One through an Instagram search of #preemie. Follow the journeys of other preemies and encourage their parents, learn as much as you can about what raising a strong, resilient preemie is all about.
Collect those mementos. When Aries was in the hospital, I was so consumed with learning all about the medical terminology and technology associated with his care. Fortunately, he had several conscientious nurses who collected all his micropreemie and preemie sized items for me to have such as his diaper, first hair clippings, probe stickers, CPAP mask, and so much more. Thanks to these sweet women, I now have a shadow box of these items to cherish and remember forever.
Show your appreciation for the staff caring for your baby. I took advantage of every major holiday to give something to the doctors, nurses, respiratory therapists, and even the custodians. Whether it was delivering valentines or putting together Easter eggs full of candy, doing something nice for others provided me with a welcome distraction from all of the chaos that can be the NICU life.
Don’t worry about what other people say, just keep fighting.
Aisha Williams is a sixth-year, English Language Arts Teacher in the Greater Houston area. She and her husband, Aaron, have been married for a little under the year and will celebrate their first wedding anniversary in December. Their son, Aries, is the couple’s only child. In her spare time, Aisha enjoys reading multicultural literature, writing, studying Japanese popular culture trends, searching for new teaching methods, and listening to music from around the world.