In the Neonatal Intensive Care Unit, or NICU for short, babies like my son are called “25-weekers.” Babies get this name from being born extremely prematurely, at only 25 weeks gestation. My son was born weighing only one pound, four ounces in the middle of August 2015.
For 147 days, Joel lived in the NICU of two hospitals (Alta Bates in Berkeley and Children’s Hospital of Oakland (CHOO)), and I did too.
He required three blood transfusions. He endured intubation and a feeding line. He was poked by needles and prodded and invaded in his tiny isolette. So that his head wouldn’t be shaped like a toaster, as one nurse described it, he was turned every three hours in a world he wasn’t supposed to meet for another three months.
The nurses and doctors knew challenges were ahead. People who care for high-risk infants are well aware that premature babies face a mountain of health issues and developmental delays. Some go blind or deaf. But, not my son! I denied any possibility that he wasn’t going to grow up with a perfectly normal childhood to become the all-star captain of the football team and prom king. He still may be all of these things, but the nurses and doctors were right. His start was not smooth sailing, but I wasn’t ready to deal with what was coming next. I was so overwhelmed in the moment.
Living in a NICU is an emotional roller coaster. The first time I held my son skin-to-skin, the nurses had to do a dance with the tubes and wires just to lay him on my chest. Feeling him next to me was the happiest moment of my life. Minutes later he was ripped from me. His saturation was dropping. He was unable to breath. What followed was a real scene that looked familiar. I had watched dramas like this on shows like ER. Everyone on-call raced into our room. People pulled me out of it—I stood and watched through the doorway dazed, crying and in disbelief that my baby was dying in front of my eyes. The happiest moment of my life quickly turned into one of the worst. The medical director had to be called to re-intubate my son. After several attempts, he got the almost microscopic tube into the airway. My son stabilized. I had climbed and sped down that first hill on the coaster ride which was to come.
In a NICU, life and death are so close at hand. There is nothing normal about this environment. I cannot fathom how someone works there every day. My admiration for NICU nurses and doctors is too profound for words. At the very least, they are my heroes. They smiled for me through the harsh sterile smell of the soap, the meticulous record keeping, and my tears, feelings of guilt, shame, tiredness, confusion, anger, sadness, and all of my hopes and fears. Maybe they’re used to it. Every parent in the NICU is in emotional turmoil. I watched as some struggled with diagnoses they weren’t prepared to hear. I got choked up upon hearing that some mothers leave their babies there because the outside world with all its addictions, hustles and other terrible things calls to them; especially after the trauma of having a baby admitted to a NICU. I talked with some couples who couldn’t wait to go home, but had to wait until their babies didn’t de-sat for six minutes. I witnessed the nurses and parents of a baby mourn its death. I sat glued to the monitors so often that some nurses turned them away from me; trying to teach me to look at my son and the signs of desaturation his little body would show.
As months passed, I slowly came to terms with the fact that I was a new and first-time Mom at 44, with nothing but God, hope and a very sick baby. I had no home, no money, no assets, no car, no family, no friends, no nothing. I literally was starting from zero. The hospitals got the ball rolling because they need to get paid. Social workers applied for MediCal, and I got the aid that is wrapped in with this application. I also got referrals to the Regional Center of East Bay (RCEB). Assessments followed. My son qualified for all services: PT, OT, Speech and Early Intervention.
We lived in shelters and all over really: Oakland, Hayward, Brentwood, Pittsburg, Sacramento, LA and even a truck for a couple of nights. A year ago, we got “housed,” as it is called—through a project-based voucher at a decommissioned navy base that is being repurposed as housing for homeless people. As much as we moved around before getting the apartment, I did my best to stay in Alameda County. This is the place where our lives were saved. This was our new home.
Meeting the RCEB was empowering. My son’s therapy was nothing that I could have ever expected, which was to drive to a dingy office somewhere, leaf through an outdated Cosmo and sit in an uncomfortable chair as he would be ushered elsewhere while I waited for him to finish.
Caring about how I was doing?
Listening to my struggles?
This is EI?
At first I thought, this is some California, granola feel-good hooey. One day, they’ll discover I am on MediCal and the real therapy will begin—back to that dingy office with outdated magazines and uncomfortable chairs. But, that never happened. I met Program Managers who advocated for me, and some of my son’s therapists have become friends. These people catalyzed my return to confidence because they were on my side—on our side—on my new family’s side. I accepted that they really did care for me because I mattered as much as my son—because I am who my son has primarily.
Because of the work my son has done he is at parity with his peers on cognitive abilities. He sings and dances. He laughs and he cries. I love to hear his cry. For so long, he couldn’t cry. He could only breathe. He is three now, and he has come so far from being a fragile “25-weeker,” that I dare say he can now be called a poster child for the immense benefits of early intervention.