December Feature Family

At the beginning of each month Ella's Halo will have a NICU family tell their story about life in the NICU with their baby. Our hope is that by featuring different families others will have a better understanding of the difficult, roller-coaster ride many face when their baby is in the NICU. Ella's Halo created the Feature Family series, if you are interested in sharing your story, please email us at info@ellashalo.com to share your NICU story and to be a future Feature Family.

Our Feature Family this month are friends we have met through Faith's Lodge.  They even spent time in the same NICU that we did with Ella. I work on the Family Outreach Committee for Faith's Lodge with Kari and have enjoyed the friendship that we have formed over the last few years.  It is fitting to have Faith's Lodge friends tell their NICU story during December since it was two years ago this December that we went to Faith's Lodge and started our own journey of hope and healing.

Brandon Patrick Elias
Written by Kari Elias
Former NICU Mommy

 July 19, 2006 our son, Brandon Patrick Elias, was born. At the time, we did not know it, but we were about to embark on a 25 day stay in the NICU. The NICU was a bittersweet place for us. The blessing was the support of our nurses and doctors. The hard part was wondering if we would ever get to experience a night at home with our son.

After Brandon was born, he was rushed to the NICU for special support. At the time, we did not know our son was very ill. We spent the first five days in a level two NICU trying to find out why our son was having trouble breathing, why he could not eat food like a healthy baby and why he had very low muscle tone. Over those five days the doctors ran a series of tests and we then made the decision to have our son moved to a NICU at the Fairview University Hospital so we had faster access to more doctors. That move was one of the best decisions we could have made. Although our experience at Fairview Southdale was top notch, things moved at a much quicker pace when we got to Fairview University Hospital.

 

After our move to Fairview University, we met a doctor that specialized in Neurology. He ran a test on our son that examined the “very long chain fatty acids,” which we were not familiar with. However, we got the results within two days. I remember the morning we got our son’s diagnosis. We had just gotten him to eat almost a full bottle. As many NICU parents learn, the criteria for taking your child home is getting him/her to breathe and feed on his/her own. We were so excited because we felt we might be on the home stretch. Later that morning, a doctor came to visit us. As we sat holding our son, he explained that Brandon had a rare genetic disorder called Zellweger Syndrome. From the look on the doctor’s face, I knew it was not good. I asked the doctor if it was terminal. His response was yes. I asked him how much time we had. He told us they really did not know. The life expectancy of a child with Zellweger Syndrome averaged six months to two years. I did not know what to think. He left and arranged for a geneticist to come and give us more details. In a weird way, it was at that moment I felt a little relief knowing there was a diagnosis, but in a split second it all changed to fear

 

After hearing our son’s diagnosis those in the NICU rallied around my family. They gave us time to cry, allowed extra visitors and worked with us to ensure our son could get home. Once we knew what lied ahead, we focused on bringing our son home to live.

 

Our son came home after 25 days in the NICU. We gave him as much life as we could by showing our little guy as much of the world as we could. My son, Brandon, went home with the angels on October 2, 2006. He lived two months and 14 days. I thank God every day He gave us the blessing of bringing our child home. I also thank God for the many people that came into our life because of the NICU: Amy Vivant, Cathy Hennessy, Dr. Keri Roberts, Dr. Lisa Schemmenti, Dr. Christina Morris and the interns at the hospital that gave us so much love and support. I sometimes wish I would have never met them, but I am so thankful that during our journey they supported us and helped us through one of the toughest times of our life.