We welcomed our most precious daughter, Sutton Grace Burnett, into the world on 10-14-12. She came to this world and immediately showed us how much we could actually love another child as much as we love our boy Hiatt. She doubled the size of our hearts and gave us an overwhelming joy the moment we first saw her.
We arrived home on Thursday, Oct 18, after a few days of recovery in the hospital for Brittany and a little bit of weight gain for Sutton. We got settled and everything in place to start our lives together as a family of four.
On Friday, Oct 19, around 10:30am, we received a call from our pediatrician letting us know that Sutton has the genetic disease, Cystic Fibrosis. As we hung up the phone with our pediatrician, Brittany and I just held each other and our baby girl with an overwhelming pressure of emotion as we began to accept our girl with a challenge to her life. Around 11:30, we received a call from the Cystic Fibrosis Center at Children’s Healthcare/Egleston Hospital here in Decatur. By 12:30, we were sitting with Sutton in our arms in the office of the clinic beginning our journey together as a family to fight CF. We met with the entire team at the clinic– doctor, nurses, nutritionist and therapist and learned that they will be a huge support to us. They immediately referred to us as a team. The doctor even came into the office on his day off, just to make sure we knew they were there for us, all of the time. We learned the basics of the disease, how it affects most CF patients, what we should expect as we get started and how we can begin treating Sutton immediately to help keep her healthy and strong.
As our emotions ride a roller coaster of hope, tears and exhaustion, we begin to accept this as our new normal. We will spend a lot of time learning. We were told that every single CF case is different and that we will have to learn about Sutton’s unique case and how we support and care for her. We have a lot to learn, but we will become the most knowledgeable we can about CF and make sure we do the best we can at taking care of our Sutton. We have pledged to spend any amount of time or resources to care for her and give her the most quality life we can give her.
We have had a few people from our family ask how they can support us and the best answer is that we don’t know yet. This is all very new to us, and while we knew that CF was a possibility, we purposely did not do any research or preparation as to not overwhelm ourselves before she was born. Sutton had a 25% chance, as did Hiatt, of developing CF and as you all know, Hiatt does not have the disease. As we jump into our “new normal” lives dealing with this, we mostly ask for your prayers and moral support. We know that as Sutton grows and we grow with her, we will all need encouragement. I am sure Sutton will become frustrated and discouraged as she gets older, but we will do everything in our power to keep her motivated to keep up with her treatments.
Brittany, me, and our immediate families are already discussing how we can become involved in the CF Foundation as this is the major source of advancement towards a cure and improvements in treatments and medicine. There are many opportunities that we have briefly read or heard about, but I am sure you will all hear from us moving forward about ways to support Sutton and other CF patients to help cure this disease. There are several types of fundraisers and events throughout the year that help to raise money and awareness towards a cure.
We are so very thankful that we have each of you in our lives. We are privileged to be Sutton’s parents and thankful for a beautiful baby girl. We thank God for our blessing and continue to pray that he will answer our prayer that Sutton will be a healthy girl. We are looking forward to the milestones that every other girl encounters in her life and being a huge part of them. We look forward to having you all as part of them as well. Thank you in advance for your support and prayers. We will continue to update you on a regular basis.
Brittany, Jeff, Hiatt and Sutton Grace Burnett