"Hey Jude, don't make it bad. Take a sad song, and make it better. "
This is a story about the resilience of one mother and the strength that it takes every single day and night to take a sad song and make it better. This is the story of Nykole, her son and the beautiful family that she is creating against all odds.
You see, at 22 most women don't worry about the what-ifs as life unfolds piece-by-piece in the usual way. For Nykole this meant becoming the wife to a man she loved and beginning their family together. She and her husband Justin wanted a big family, and they soon found out that Nykole was pregnant. She dreamt of the baby boy she would someday hold in her arms as she passed one month at a time through an easy, text-book, perfect pregnancy. They chose the name Jude for their son and celebrated the end of nine long months as his induction was scheduled. Nykole could never have prepared herself for the direction that the birth would take or the way that it would change her life forever.
Nykole had dreams for her son. She imagined a skateboard-riding, motorcycle-loving musician. His nursery was complete with every toy and gadget that you could imagine for him to play with as he grew and learned. His carseat sat empty and ready in the backseat of her car- just in case- a month before her due date. Nykole imagined Jude's first days of school, his first crushes, and her husband's little sidekick following him around the house.
On the day of his birth Nykole did everything that a mother should. She did everything that she was told to do. Despite her best efforts and the fact that the baby was, by all outward signs, doing well during labor things didn't happen the way that she had always rehearsed in her mind. After pushing, Nykole underwent an emergency cesarean section. On June 12, 2015, Jude Lawrence Nichols was born. He was not breathing. His apgar score was zero (a fact that Nykole would not know for weeks and would learn as an incidental finding on a medical record from the night of his birth). Nykole awoke from anesthesia to find that her entire world had forever changed.
The days that followed were the happiest and worst of her life. She finally had her baby boy- the baby that she had waited for- the start to her family. The worst because of the reality before her- a baby on life support with tubes and wires and monitors. After six hours of waiting to see Jude she stared at his tiny body with no idea what was going on, knowing that within ten minutes he would be gone and on his way without her, travelling from Brevard County to Winnie Palmer Hospital for Women and Children in Orlando, Florida. Questions swirled around her mind as she struggled physically to come around from her surgery. The confusion set in. What went wrong? Why did this happen? What happened in the operating room? What is going to happen to my baby? It was at this moment that Nykole says she went "primal." The instinct to be a mother was crushing her as she watched them wheel her baby away. Everything in her told her to hold him. To feed him. To protect him. She felt helpless and told her husband to go with Jude to Orlando so that he wasn't alone.
Nykole couldn't stand it. The reports from doctors weren't good and she was told that Jude wasn't going to make it for very long. If she wanted to ever hold her baby she had to get to Orlando. Quickly. With a sense of urgency and the fierce drive of a mother she checked herself out of the hospital just hours after her cesarean section and asked her best friend to make the hour long drive from Melbourne to Orlando. With each breath she took she remembers feeling like there was an empty hole in her chest. She had to be there.
Finally, standing in the Winnie Palmer NICU, Nykole was reunited with her son. Defying all odds and against all expectations, Jude survived and kept surviving. It was a miracle. Days turned to weeks, and Nykole and her husband lived in the Ronald McDonald House for Families as she pumped constantly to provide Jude with everything she could to help him as he struggled to live. For 57 days and nights he stayed in the NICU. Nykole remembers the lonely life of a NICU parent and credits her family and friends for keeping her going. On July 4th, 2015 she stood beside her husband as he cried on the top floor of the parking garage of the hospital, watching the fireworks from the rooftop. The new normal was so fresh and they had no idea what to anticipate.
During his time at Winnie Palmer, Jude would receive the official diagnosis of HIE, or Hypoxic Ischemic Encephalopathy. HIE occurs when the brain loses oxygen and becomes damaged. Hypoxic means loss of oxygen, ischemic means restriction of blood flow, and encephalopathy means affecting the brain. You can learn more about the condition here: Hope for HIE.
The New Normal
Now the days are a blur of the new normal. Each morning starts at 8:45am with preparation of 7 different medications. At 9:00am Nykole puts on Jude's CPT vest. This vest shakes his little chest and helps to remove mucus from his lungs. While he has his "shakey vest" on, Jude also has an albuterol treatment through his nebulizer. Once the CPT vest is done Nykole begins his cough assist, pulling his loosened secretions out with a plunger-type machine. Throughout this process, she suctions him and ensures that his nasal cannula hasn't left his nose. Next Jude gets his pulmacort breathing treatment. He is also hooked up to his food machine for his morning meal, which is unhooked following the second breathing treatment. They then change his diaper, put gel drops in both eyes, and put sodium fluoride drops into his mouth. Once this routine is complete she carries Jude to the living room or the car, depending on the plans for their day. Jude relies on a constant liter of oxygen, a g/j feeding tube which runs 24 hours as well as a constant suction to keep his airway clear. He has no ability to suck or swallow. With 1:00pm comes a saline treatment, "shakey vest" and more cough assist, which is all repeated again at 4:00pm along with two more medications. Around 9:00pm Nykole must be home to perform Jude's nighttime treatments, which means repeating all of the morning routine. It now takes two adults to transfer Jude from room-to-room, as well as to bathe him and change him as he is what Nykole says is 36 lbs of beefy boy. Jude has a machine to report his heartrate and oxygen levels and wears it 24/7, and his parents wake up again and again throughout the night to suction him as he sleeps in a special bed alongside their own.
Living with a child with disabilities is something that Nykole and Justin are now accustomed to. Life is now focused on daily care, staying sanitary and safe from germs and putting the basic needs of her son before her own. Most days are spent safely within the home, but when they do venture out of the house it takes packing and planning.
Nykole wishes that more people showed compassion when they encounter Jude in public. She wants people to know that he isn't broken and that he deserves the love and care and respect that anyone else would be afforded. She says that she would like it if more curious people would simply ask to learn more about Jude and his condition instead of staring. Nykole and Justin want to educate people on HIE and what it means for so many young families.
Relationships are so important to those caring for a disabled child like Jude, and often after the dust settles you learn who in your life you can lean on. Nykole thanks her family for always supporting them emotionally and physically, and says that she is blessed to have the family and friends who have walked with them on this difficult journey. The first year of life caring for a child with a disability is the most trying, and according to Nykole that is an understatement. She felt like their new normal really set in at Jude's first birthday and feels like this experience has brought her even closer to her husband, Justin.
Hey Jude, don't be afraid.
Putting the past aside, and with bravery considering all they've been through, Nykole welcomed her second son, a healthy and beautiful baby boy named Jackson Ernest James in 2017. It took courage to have a second child. Fear of the past was never far from her mind. Just as with Jude she had a normal, healthy pregnancy. The delivery was via planned cesarean section and everything went well. Nykole feels now as if she is learning how to be a mother all over again, because Jackson has such different needs than Jude and she is experiencing firsts that she didn't with Jude.
Let it out and let it in. Hey Jude, begin...
Thinking back to those first days, Nykole has a message for new parents who are just receiving the HIE diagnosis:
"Just live in the moment. Don't think about the past or the future. Spend every second with your baby and spend it in love. These babies feed off of your love and hope. Don't ever give up."
She encourages parents not to spend the precious time that they have with their child in worrying, but to enjoy this life.
Citing a lack of information about the condition that was frustrating to her in the early days of Jude's diagnosis, Nykole refers parents of newly diagnosed children to:www.hopeforHIE.org and the Facebook community of parents of children with HIE: @hopeforHIE .
To follow Jude and family, please visit the page Strength for Jude.
About the project:
Tamsin Photography selects one mother who has exhibited courage, strength and resilience each year on Mother's Day from hundreds of nominations. This year, Nykole Nichols was chosen to receive a family portrait session to artfully document the love that she has for her children. As part of that process the family also collaborates with the photographer to create a special article to bring awareness to issues that otherwise do not receive the attention that they deserve. This annual portrait project was created with a focus on education and awareness of chronic health conditions. To see more from this and previous projects visit @tamsinphotographyFL on Instagram or @tamsinphoto on Facebook.