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by Adam Wood
Our son, Brady, was born at 25 weeks and weighed 1 lb. 4 oz at birth. He was born as a result of preeclampsia which caused his mom’s blood pressure to rise to dangerous levels. My wife also suffers from a kidney disease called Polycystic Kidney Disease which led to additional complications leading up to birth. We spent 135 days in the NICU at Connecticut Children’s Medical Center and eventually went home on oxygen as well as a g-tube.
Dark Days of Complications
Brady was diagnosed with chronic lung disease and had a variety of other respiratory issues. Over the first couple months he was on the oscillator, ventilator, CPAP and low-level oxygen as he continued to grow. During his stay he also had several infections and was diagnosed with pneumonia several times. This led to several delays in his ability to come off various levels of oxygen.
One of the darkest periods of our NICU stay came when we almost lost our son, as he was on 100 percent oxygen support. The doctors and staff had to manually pump oxygen into his body, and he was in critical condition. It was a moment that neither of us will ever forget. After several days, he began to slowly recover and fought to overcome a variety of other obstacles.
Brady, along with his respiratory issues, also had severe hernias that needed to be fixed as part of the surgery to provide him with a g-tube for feeding. When we went home, we also went through several cranial helmets in order to correct his disfigured head as a result of being in the NICU for such a long period of time.
Coping with Life Beyond the NICU
The first two years were very hard for our family. We always felt that we were always operating in survival mode. We had to stay away from family and friends in fear of him getting sick. And that was before the pandemic even happened. So, for the last two years, we really have been very secluded from most of the people we love most. While it has been hard to do it alone for a large portion of our experience, we love who he has become.
As a result of this experience; I also wrote a children’s book called Our Preemie Adventure which will be available in a few months. The book is a dedication to our son and all NICU families. It captures the milestones our kids go through as they go home. The tone of the book is through heartwarming images and humor. I feel that humor is something that is hard to come by and hope my efforts will make many families past, present and future laugh.
Looking to the future, cherishing small moments
Our son is almost three years old and is thriving in a way we never imagined. He loves his books and has an affinity for learning. He teaches us everyday how sacred life is and how to cherish the moments no matter how small they are. Next month we will be finally getting his g-tube removed, and the doctors have been amazed by his progress. He also was chosen recently to be an ambassador for Connecticut Children’s Hospital over the next two years. He and our family will help to support the hospital at charitable events and help work to make the hospital the best experience possible.
We heard about Hand to Hold after our NICU stay. I began to get very involved in helping families and joined the Family Advisory Council at our local hospital. I really enjoyed reading about the ways Hand to Hold supports families and provides outlets for everyone, including the dads who are often overlooked.
Advice for other NICU parents
Take it one day at a time, and understand this is a slow journey. You must also realize that every journey is different from yours. You may see a family that seems to be thriving and wonder why not us? Often, you find out that their situation can be a great deal worse and their struggles long are harder than you may imagine.
Lastly, communicate with your partner honestly. It’s ok to let them know the feelings you may be having. Let them know if you need them to be the strong one for that day. Families that shut down and fail to communicate often struggle during their stay.
About the author
Adam and his wife, Jenn, spent 135 days with their son, Brady, in the NICU at Connecticut Children’s Hospital. Brady was born at 1 pound 4 ounces, at just 25 weeks gestation, suffering from bronchopulmonary dysplasia, apnea of prematurity, pneumonia and a variety of other respiratory issues. While their journey is far from over, their experiences have become a children’s book for preemie families, which takes a humorous and heartwarming look at the journey shared by so many families.
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