In 2004, we were thrilled to be adding to our family, and expecting twins. I seemed to be experiencing an average twin pregnancy, with the only concern being my low weight gain. At my 36 week doctor appointment I had lost 3 pounds, and after an ultrasound, I was sent across the street for an emergency C-section delivery. Less than an hour later, Krista and Trista were born weighing each a little over 3 pounds and sent directly to the NICU. While Krista was needing oxygen support, Trista was born with an Apgar score of 1, and was completely unstable even while ventilated.
At less than 24 hours old, Trista was flown to Omaha Children’s Hospital due to a complicated airway and multiple heart issues. Her condition was constantly measured hour by hour, not in good days and bad as many NICU babies are evaluated. She spent her first 5 months in the NICU, and then was transferred to the PICU. While still under 7 lbs, she had a tracheotomy and jaw surgery, and her first open-heart surgery in April. While Krista was home from the NICU after 17 days, our lives were still upside-down with one of our babies over an hour away. During this time, the girls were only together on three different occasions.
Just short of the girls’ first birthday, Trista was transferred to Ambassador Hospital in Omaha. We continued to watch her battle each day against infections, heart procedures, complications, and jaw surgeries. On October 16, 2006, after 696 days in the NICU, we finally brought her home, and our twins were finally reunited.
Both Trista and Krista were diagnosed with a genetic condition– 22q11.2 deletion, or the deletion of a small amount of genetic material from the 22nd chromosome. While Krista has what doctors refer to as Velocardiofacial, or mainly facial differences, palate complications and a heart defect, Trista was diagnosed with DiGeorge syndrome– characterized by heart defects, a poor functioning immune system, cleft palate, and delayed development with behavioral and emotional problems.
Our girls are now almost 11 years old, and while each year of their lives have been filled with many ups and downs, as well as countless follow up appointments, procedures, and hospital stays, we refuse to let 22q11 define them. They are amazing little girls that live every day to their fullest potential, while attending school, working hard in therapies, and giving doctors a run for their money. Every day provides us with endless amounts of hope, as we are so blessed to be their parents.
We are excited to be serving as the 2015 Sioux City Signature Chefs Auction ambassador family, and to be giving back to an organization that has given us so much. Without the medical research conducted by the March of Dimes, the knowledge of our medical teams, and our unwillingness to give up on our daughters, our story would have had a very different ending. Our goal is to help pay it forward to other families just starting on their 22q11 journey, and to encourage others to look beyond a diagnosis on paper, because it is just that– paper. We hope that sharing Trista’s and Krista’s story will help bring awareness to the importance of the March of Dimes and their mission, while also raising essential funds to support their life-saving research, and to find answers to fight preterm birth and all genetic conditions.
Tiffany, Brad, Tracer, Krista & Trista Leckband