“Most kids dream of being a doctor, an astronaut, a veterinarian or some other profitable occupation. Although I had similar career aspirations, I knew at an early age I most wanted to be a wife and a mother. And in 2012 the first of those dreams came true…I married my best friend. I thought if my husband just looked at me the right way I would get pregnant. I couldn’t have been more wrong. The next 6 years were filled with loss, unexplained infertility and heart-wrenching disappointment. One doctor’s words to my husband and I still hurt to recount. As she walked into the room she looked down at my chart and said, ‘You know, sometimes you just have to be honest and stop kidding yourself. You have to know when to quit.’ Those words not only pierced my heart like a knife but they also hacked at my hope like a machete for the next 3 years.
By the fall of 2017, I had focused my energy in other areas like earning a Bachelors degree. There was always a hole in my heart I knew a child would fill. During the first week of October I began to experience what I knew to be pregnancy symptoms, but amplified. As the days went by, the fear of disappointment just wouldn’t allow me to open my heart or mind. After a week of my husband practically BEGGING me, I finally gave in and took a pregnancy test. Before I could sit it down on the counter, I saw the test line turn and I screamed!! ‘WE ARE FINALLY PREGNANT!’ From that moment on, my pregnancy was an absolute DREAM. I was followed by a high risk fetal medicine doctor, seen twice a month, and had lab work and ultrasounds performed at every appointment.
At my 24-week appointment, I learned my doctor had an emergency and I’d be seeing one of her partners. During the visit, I was seeking clearance to fly cross-country with my husband for a show and our babymoon. I did have a bit of swelling in my ankles, but the doctor wasn’t at all concerned because my blood pressure was great. He also said I didn’t need to do repeat lab work.
I felt great on our first day in Las Vegas but just wanted to rest before our schedule picked up the next day. By morning I noticed my hands and feet swelling and at the end of the night my legs were so swollen that I could barely walk. I remember thinking, ‘What if I have a blood clot in my lung from the flight?’ I quickly dismissed that theory because I didn’t have shortness of breath. I put my feet up in between the various events we attended. That evening I became winded while walking and overnight I couldn’t lay flat to sleep. I decided to send my doctor a message with a timeline of symptoms as well as my concern about going to the ER while in Las Vegas. Meanwhile, I was sitting straight up in bed on Web MD trying to self-diagnose AND convince myself that I was ok. Oxymoronic right? She advised I return home immediately and we did.
We made it to the airport but it became harder to walk and breathe so we flagged down an airport employee who wheeled me through security and to our flight. Towards the middle of our flight I began experiencing a nagging pain in my upper abdomen. I went to reach for my purse and realized that my feet were bursting the seams in my shoes. I took two Tylenol to help the pain in my stomach and realized not only had I not been to the bathroom (despite drinking all flight), but I also hadn’t eaten in over 20 hours. Upon landing my vision took a turn for the worse and I lost the ability to see color. I was so afraid. We dropped our luggage off at home and then headed to the hospital.
I was wheeled up to Labor and Delivery where after sharing my symptoms a nurse told me, ‘Oh, I’m sure you’re fine love. But since you’re not in labor and your concerns aren’t ‘pregnancy related,’ you’ll need to be seen in the Emergency Room.’ She took the blood pressure cuff off of my arm saying it wouldn’t read. I waited close to 10 minutes before someone wheeled me down to the ER and shared my symptoms. The triage nurse took my vitals and as soon as the numbers came up her eyes widened, she stopped talking and immediately turned to hit a red button on the wall. Seconds later, what seemed like a dozen people came running and helped lift me out of the wheelchair onto a stretcher. As they rushed me down the hallway I heard someone say, ‘Call a brain attack! BP 262/148!’
The next hour was filled with lab work, x-rays, fetal monitoring, as well as trying different medicines to lower my blood pressure. Finally a doctor came in and said, ‘Mrs. Ford, I’m afraid you have preeclampsia. Your blood pressure has barely been touched by these medications and you have quite a bit of protein in your urine. I’m waiting for a few more tests but I can assure you that you won’t be going home today. I can only keep you pregnant until 32 weeks with preeclampsia. So you’ll be staying here on the L & D unit until you deliver.’ Although I wasn’t happy about the diagnosis or having to remain inpatient, I was relieved my baby was fine and now I knew what was wrong.
Before my husband and I could even accept or share the news, three doctors came to the foot of the bed with facial expressions I’ll NEVER forget. They told us, ‘Not only do you have sudden, onset, SEVERE preeclampsia, but you also have something called HELLP syndrome. You are in kidney and liver failure and need to deliver your daughter IMMEDIATELY via emergency cesarean section.’ I would also likely spend the next few days in the ICU recovering due to the multi-organ failure. It was as if time stood still and the weight of their words hit me like an 18-wheeler. I was going to deliver my baby at just 26 weeks? What would a 26-week-old baby look like? How much would she weigh? WOULD SHE SURVIVE? These were all the questions that flooded my mind as they rushed me up to L & D and removed my remaining clothing.
My husband began notifying close family and friends. As I listened to him breaking the news over and over, a doctor introduced herself as a NICU doctor and began sharing words that haunted me for months to come. ‘Mrs. Ford, you should know that although your baby is viable, she’s susceptible to respiratory failure and may not be able to breathe on her own. There could be issues getting the breathing tube in causing permanent esophageal, trachea and vocal cord damage. She could have brain bleeds requiring brain surgery, seizures and has a very high chance of having cerebral palsy, developmental delays and other complications. We need you to know all of these things so you know what to expect for the next few months you’ll be in the NICU with your baby.’ Next few MONTHS?! Cerebral palsy? Brain bleeds? Brain SURGERY? Another doctor came in and told me I would be delivering my baby under general anesthesia so I could be sedated and intubated to relieve my lungs from the pulmonary edema caused by preeclampsia.
I was crushed my husband wouldn’t be able to be in the OR along with the surgical, NICU and ICU teams who were ready to care for us both. I said goodbye to my husband and family for what felt like the very last time. As I was wheeled to the OR fear enveloped me and all I could think was, ‘This is it! I’m not going to make it. He’s going be raising our baby alone. Why me? Why us?’ As they transferred me to that operating table, a nurse held my hand and whispered a prayer in my ear. That’s the last thing I remember before falling asleep.
When I opened my eyes I was alone in a very large and empty room. Although very groggy, I could see the clock on the wall said 12:15 p.m. I felt an uncomfortable pressure in my chest and realized I was still on a ventilator. I tried to lift my hands and feet but couldn’t as I was tied to the bed. I began to panic and cried for what felt like an eternity before two doctors came in the room and explained my c-section went well but the birth didn’t immediately resolve the preeclampsia, HELLP Syndrome or multi-organ failure. Luckily, I was able to avoid needing a liver transplant. The ventilator was stopped and the breathing tube removed. My husband came in the room shortly after and told me, ‘Our daughter was born at 6:32 p.m., weighs 1 lb 15oz, is 15.5 inches (VERY long for a 26 weeker) and is doing great!’ About 12 hours later, my blood pressure and liver enzyme count improved enough to be moved to Labor and Delivery. I was so drugged, sedated and groggy, but I couldn’t rest until I laid eyes on my little miracle. They wheeled me to her incubator and as they lowered her bed, I laid eyes on the tiniest baby I had ever seen. She was kicking, flailing her arms and being the sassy fighter as we would come to know her. I touched her finger and she grabbed my finger with all her might. It was then I knew not only would she, but WE would be just fine.
I learned she did come out breathing on her own, but they put her on a ventilator as a preventative measure. But our little fighter insisted on breathing at her own pace causing her right lung to tire and collapse. It happened a few days later on the other side. So by her 5th day of life, Reign had experienced 2 lung collapses, chest tubes and blood transfusions. She then somehow got the strength to pull out her breathing tube and was breathing on her own for close to a minute before anyone discovered what she had done. They decided to leave the tube out and put her on bubble CPAP, a form of nasal oxygen that helps develop the lungs as well. She did great and by week 7 she grew tired of that as well and pulled it off as I watched on camera from home to see if anyone would run to put it back on. Turns out her vitals never changed, proving that she could breathe WITHOUT help. The oxygen never went back on.
For the remainder of her time in the NICU, Reign led the way with her milestones. She had a total of 8 blood transfusions and needed phototherapy for jaundice twice, but overall had an amazingly uneventful 80 day journey in the NICU. She left weighing 6 lbs 10 oz, 3 weeks before her doctors predictions, without oxygen, monitors, medications or any of the other standard care items that most micropreemies bring home. Her homecoming was quite a celebration for not only our family, but also the social media followers all around the world who had grown to love her, pray for her and keep up with her progress via social media, family and friends sharing this miracle of hope.
Although she came home completely healthy, her lungs proved to still be extremely premature and no match for the fall/winter of 2018. She contracted croup, bronchiolitis, pneumonia and RSV twice, the second bout being far more deadly. As a result of the damage done to her lungs, she became oxygen dependent in the spring of 2019. Despite those initially grim predictions for development, Reign still met all of her milestones within normal range and weighs a healthy 25 lbs. Because of our journey with prematurity, a near death birth story and parenting a medically fragile child, we decided to turn our pain into advocacy by becoming ambassadors for March of Dimes as well as mentoring other NICU, preemie and medically fragile parents through our Instagram profile. We were most recently a part of the March of Dimes’, ‘It’s Not Fine’ campaign commercial and print ads. We hope that through sharing our story so openly that no other parent feels as alone as we once did and knows despite the circumstances presented, they too can REIGN!”
This story was submitted to Love What Matters by Ebony Ford of Washington DC. Follow her family on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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