To the Editor:
By the time this letter is published, tomorrow will be my daughter, Lyla-James Jones’s, first birthday, and I would like to give a huge thank-you to this Island community.
On May 5, 2010, I went into labor at 32 weeks pregnant and was rushed up to Tufts Hospital in Boston where I was scheduled to deliver, having learned a week earlier that Lyla-James had a heart defect called critical pulmonary stenosis. I spent the next eight days in light labor on bed-rest with my mother, Randi Hadley, by my side. My soon-to-be-husband, David Jones, was making frequent flyer trips to and from Martha’s Vineyard and Boston awaiting delivery. During that time, I made three false trips to the operating room in hopes of Lyla being born. And then, on May 12, they finally gave the green light for surgery the next time her heart-rate dropped below 60. I waited until 1:22 am on May 13th for her to be born.
That day, David and I met our little Lyla-James, then 3 lbs. 14 oz., in the NICU at Tufts. Shortly after, she was transferred to Children’s Hospital, Boston, where they planned to perform her first heart procedure, a cardiac catheterization. While recovering from a c-section at Tufts, we learned that Lyla-James had gone into cardiac arrest for half an hour, and she was barely clinging to life. After calls to our family, we were discharged from Tufts and took a prayer-filled cab ride over to Children’s.
All of the grandparents made their way up there within hours. We weren’t allowed to see her right away, due to her critical condition. Finally, David and I laid our eyes upon a very swollen, blue, intubated, daughter. Every hour was a fight for her life, and the prospect of her possibly losing a foot and some fingers due to the lack of blood-flow made it that much more terrifying. She was hardly recognizable.
Slowly but surely, over the next week she began to fight her way “out of the woods,” and the week ended with her having another cardiac catheterization, much to our dismay. This time, however, it went without a hitch. They still weren’t able to fix the problem, though. I spent the next five (six in total) weeks living at Children’s Hospital. She eventually moved from the Cardiac Intensive Care Unit to the NICU, then graduated to the Cardiac Step-Down floor. From there, we were able to take our 5-lb. daughter home for the very first time.
Those six weeks were made so much easier with the love and support I constantly received from friends and strangers on Martha’s Vineyard.
It has been a long first year. She’s had two more cardiac catheterizations since we left, and her clogged right pulmonary valve is still not fixed. We’re currently traveling back to Boston every three months awaiting open-heart surgery.
I truly don’t believe she would have made it without the help of the continuous prayers sent our way from home, especially those from our church’s congregation at the Vineyard Assembly of God, Lyla’s wonderful friends at Cronig’s Market in Vineyard Haven, and complete strangers. Once home, I was showered in love and support just walking down the street — everyone seemed to know who Lyla-James was.
Lyla has made leaps and bounds developmentally with the help of Alecia Barnes from Early Intervention, and has successfully tripled her birth weight with the help of her pediatrician, Dr. Miller, who not only saw us every week at her office, but took late-night phone calls from two frantic parents freaking out over every little thing.
Lyla-James is very much loved, perhaps at times a little too much, by her amazing grandparents, Randi Hadley, Bill Russell, Mary Alice Russell, John Jones, and Elizabeth Jones; and all of her aunts and uncles, Joseph Jones, Phoenix Russell, Shelly Jones, Megan and Michaela Piche, and the outstanding Unkie Jake. Without our family, we truly wouldn’t have made it through this past year.
I cannot begin to thank everyone who has said a little prayer for us, or has sent good vibes our way. All of my hot-mama (and dad’s) friends who have laughed and cried with me, make this whole child-rearing experience bearable. Reflecting on this past year has made me so grateful for the long nights, the frustration, the wanting-to-pull-my-hair-out screaming. We have been so blessed with the most precious little girl, and we positively could not imagine our lives without her.
So thank you to everyone who has played even the most minute part in making this first year even happen.