Ashley and Finn “Break to break open”
It all started five years ago when my husband Zach and I started trying for a second child. After multiple losses, we were finally blessed with what we thought was a healthy pregnancy. At about 24 weeks of gestation I started leaking fluid. I went to the doctor who sent me to labor and delivery for further evaluation.
Immediately following the ultrasound, the doctor came in and said that I would not be leaving. I needed to stay in the hospital for the remainder of the pregnancy. I called my husband and told him to come to the hospital.
Photo by Randy Bacon
Our first night, the neonatal intensive care team came to our room to let us know what to expect with a premature baby. They said every day that we could keep him in is better. They also said delivering this prematurely would put our baby at risk for neurological disorders, cerebral palsy as well as multiple other conditions. They estimated that he weighed about 2 lbs.
One week went by. On Monday February 24 that about 5:30 a.m., I woke up and I was bleeding, I called the nurse to check me. They said your baby is in distress and that he would be born within 3 hours. I had to make that dreadful phone call to my husband and told him to come to the hospital; that we would be delivering our baby boy. After a tumultuous delivery, I gave birth to Finnegan Laney White. He weighed 2.6 pounds and was 15 inches long.
Finnegan was taken to the NICU and placed on a ventilator. I was able to go see him after 3 hours of recovery. I arrived at the NICU and the nurse said I could put my hand through the hole in the incubator and touch him. I've never been so scared in my life. He was covered with wires and tubes and there were flashing lights and alarms going off. It was so much to take in.
Photo by Randy Bacon
I was discharged from the hospital the following morning. I experienced the most unspeakable feeling. Leaving the hospital without your baby is unbearable. No parent should ever feel that pain and emptiness. That was the longest night at home, and I couldn’t wait until the next day to get back to the NICU to be with Finnegan.
Photo by Randy Bacon
In total we spent 80 days in the NICU. That’s 12 weeks. Eight of those weeks I lived at the Ronald McDonald House. Once Finnegan was stable, I chose to move back home for the remainder of his stay for our other son Sterling, who was 13, and my husband. Having a split household was hard mentally and emotionally. Zach needed his wife,and Sterling needed his mom. I still spent each day at the NICU and went home at night.
On May 10th, Mother’s day Finnegan was allowed to finally eat by mouth for the first time and we were discharged 5 days later.
Photo by Randy Bacon
Finn bravely fought through his first five years of life. He has chronic lung disease, asthma, and has been frequently ill with respiratory infections since he was born. He has seen a pulmonologist all his life, as well as multiple visits to doctors, urgent cares, and emergency rooms for respiratory infections that always seemed to go straight from a sniffle into pneumonia. We always thought the respiratory struggles were due to lung scarring, asthma and ventilation from his immaturity known as BPD (Bronchopulmonary dysplasia).
Recently, Finnegan’s pulmonologist became concerned that he was not outgrowing some of the respiratory difficulties as many prematurely born children do and referred him to an immunologist. In April of 2019, Finn was diagnosed with Primary Immunodeficiency. Finnegan has almost no ability to fight off infections from bacteria or viruses. Finnegan has lost his immunity to illnesses he had been vaccinated against, and in some cases like pneumonia, he is completely unable to form immunity to specific pathogens we thought he was protected by vaccination.
Finnegan will need infusions every week to provide him with the antibodies he needs in order to have the protection from pathogens, allergens, and even cancer. It is not a cure. He will require these infusions for years and possibly for the rest of his life in order to stay protected.
We don’t have the whole picture yet. We are 4 treatments in and will have our 5th treatment on July 4th. Finnegan is tolerating his infusions well. He does experience anxiety and becomes tearful right before his infusion and does have some discomfort. He gets fatigued more than usual, but continues to keep a very upbeat attitude. He says he's brave and knows that the infusion’s "super juice" will help him not get sick. We will go to St. Louis Children's at the end of July to begin genetic testing to determine the extent of the deficiency and to help determine if Finnegan will need these infusions for the rest of his life.
Photo by Randy Bacon
“Do not break to break down, break to break open. We cannot truly grasp the depth of our light until we are shown darkness”. This quote means a lot. When we found out that Finnegan had Primary Immunodeficiency, we were devastated. I couldn't even talk about my son without breaking down. Once I read that quote,everything changed. When I realized I could use my voice and share his story and be his advocate, it lit a fire inside of me and gave me a new purpose. I’ve learned to not dwell on a diagnosis. That a diagnosis does not define you.
Finn Fighters
We have started the Finn Fighters as a source of support and encouragement as Finnegan begins yet another battle to live. Donations will help to bridge the gaps in which there is no insurance coverage. They will help us get him to and from his appointments, complete the genetic testing that is not covered at all for myself and my husband, help with copays, help cover lost wages, and allow us to modify Finnegan’s environment to keep him safe. Each donation of $25 will receive an awesome Finn Fighters T-shirt and our eternal gratitude for helping us to allow Finnegan to keep up the good fight. Visit finnfighters.com for more information.
Every infusion takes several months to develop and the plasma of several donors to create. There is a nationwide shortage of this lifesaving treatment. Please consider blood and plasma donation for the benefit of all children needing help with immune supplementation.
We thank you with all our love, as we continue the journey with our determined and sweet Finn, who has touched so many at such a young age. He is not the life of the party. Finn is THE party!
Zach, Ashley, Sterling, and Finn
Photo by Randy Bacon
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