As the heart of summer starts to wind down, I cannot help but reflect on how the past couple months have been for us. I have to say that this summer was full of highs, wows and downright gratitude for God's grace. First off, Brayleigh came off of supplemental oxygen and has not needed it for nearly five months now. It makes it much easier to transport her from place to place without carrying her and an oxygen tank. She is much more aware, loves to play and enjoys hugs and kisses. It is a sweet sight to see.
After getting medical clearance from pretty much every specialist doctor from pulmonology to cardiology, we decided to take a huge leap of faith and travel to New York to visit family. While logistically getting to and around the airport was major drama, Brayleigh handled the flight extremely well. Not once did she cry or whimper. She had a chance to meet lots of cousins in Brooklyn, and even showed them how she knew how to pull out her feeding tube! She seemed exhausted by the end of our stay from all of the hosting, hugs, oohs and ahhhhs. We also spent a few days in Manhattan for a family reunion. Brayleigh was able to enjoy a double decker bus tour of the Big Apple (and she rode on the upper deck). While we chose to limit her activities (like going to Rockefeller Center, museums and a Broadway show), she did join us for a family picnic at the Chelsea Pier, and took in a great breeze on the carousel with big sis. We were advised that traveling with Brayleigh could be stressful on her and her heart, but for her, it seemed like a piece of cake and she did it!
Shortly after returning from New York, we received big news. A couple of weeks after she was born, it was suggested that Brayleigh be placed in hospice care once we brought her home. It was definitely a hard pill to swallow because it seemed like we were giving up on her. But to the contrary, it ended up providing her with resources that we needed as a family and a truly and genuine supportive network to ensure that she was taken care of. Well because she exceeded the life span initially projected and was in an upward trajectory, Brayleigh graduated out of hospice! She is only the second child with Trisomy 18 in three years to graduate from this program. It was such an honor and boy, did we celebrate our baby girl's achievement.
Brayleigh has demonstrated her strength and awareness by constantly pulling her feeding tube out and causing us repeated angst. After careful thought, we decided to have the gastric tube (G-tube) inserted surgically into her stomach just over two weeks ago. Brayleigh tolerated the surgery well, and after one night's stay in the hospital, she continues her road to recovery. Her face is now cannula and feeding tube free, and for the first time in a long time, we can see her beautiful little face every single day.
Brayleigh has undoubtedly defied all odds over the past few months. As she approaches her first birthday in October, I continue to be extremely thankful for her and the joy that she has brought to our family. This summer, we truly learned how prayer changes things like never before. We have so much to look forward to, and we are so proud of our baby girl for continuing to prove her purpose on this Earth.
Tuesday, August 25, 2015
I had the pleasure of connecting with a woman, Mrs. Day, who saw the Fox News story back in April. She lost her baby to Trisomy 18 nearly 11 years ago but was so inspired by Brayleigh's journey. After four months of communicating via phone and email, she came by to meet Brayleigh today. I tried to be sensitive to her emotions when she asked to hold her. Through her tears of admiring Brayleigh's progress and abilities, we did manage to laugh a lot. She gave Brayleigh a blanket that belonged to her daughter, Jade, and that nearly put me in tears. In the end, our babies' journeys (while different) have been and continue to be an inspiration to us all.