After several months of anticipation, planning, stress, and many emotions...They FINALLY got all of Jessicas doctors scheduled to be there together for her surgery. They landed in Boston this evening. Please continue to keep Jess and her family in your prayers, along with the doctors who are doing her procedures. I decided to renew the fundraiser I had going for them last year. Please continue to help me reach our goal to help with expenses while they are out there. Doctors said they will be there at least 2 weeks. We all know how much rooms, food, rental car and much more adds up fast.
PLEASE join me in helping raise money for Jess's family with medical expenses as they have to make frequent trips to Boston where Jessica is admitted at times for different procedures. Below is a story about the beginning of Jessica and family's journey.
This is what made me decide to do this fundraiser!
I was chatting with Jess's mom Rebecca the other day and she mentioned that they have to go back to Boston again soon and said "I don’t know how we will afford it, but we always figure it out...we will claw our way there for her!" My heart broke at that moment, I asked her how much it costs them when they have to travel to Boston and she said "If we can get patient housing it’s only $30/night. But a hotel like last time was $1100.00 for a week! A car rental and plane tickets and food add up to usually $1200.00".
I immediately got this feeling come over me that God was telling me to find a way to help, so here I am begging you all to help me make this happen for their family to be able to travel to and just get to spend quality time with their sweet lil girl without worrying if they can afford to get there and back home.
THE BEGINNING OF THEIR STORY Written by Jessica's mom Rebecca
The beginning of our story...
Will my baby survive?”, I asked Dr. Souki. “Is this fixable?”
The Pediatric Cardiologist’s sorrow-filled eyes embraced our own looks of deep worry.
I was laying in the soft light of the room, resting in the hospital bed I had given birth in only a few hours earlier. My husband, ever the strong warrior, was protectively sitting by my side.
The answer hung in the air for what felt like an eternity…
I felt violated. Robbed. Robbed of the hours that should have been showered balloons and flowers, laughing and happy tears. Hours filled with visits from doting grandparents and sweet moments of treasured bonding. My confused heart was both shattered and full of exuberance at the same time.
My husband, David and I, just had a little girl!
Jessica Marceline Anne Nika.
A name that will bring us love! Yet, while it was a name full of song, at that moment, it fell on deaf ears.
It was only a few minutes earlier that we had come to an uncomfortable peace after learning that our new baby had a rare birth defect.
We knew she had Down syndrome, it was diagnosed in utero and our excitement and love for our baby grew at the news!
The rest was a shock.
Soon after Jessica was whisked away to NICU, Neonatologist Dr. Batton softly knocked on our door. By this time, the adrenaline filled room had cleared. The room cleaned. The deafening quiet had begun.
He sat down before us and explained that Jessica had a birth defect that resulted in her esophagus not connecting to her stomach. She was born unable to swallow. In addition, her trachea was attached to her esophagus.
She needed immediate surgery. It would happen within three days. His words were kind as he explained in detail what would be done. We nodded. We cried. We hung our heads as he left the room.
David and I began to grieve the situation. Processing. Holding on to each other.
Then, another knock. Another Doctor. Dr. Souki. He gently greeted us. Dr. Souki, with eyes that peer deep into your heart, explained with the hushed voice of a father calming his child that
Jessica also had a hole in her heart. A very large one. It can be fixed, Dr. Souki said. Yes, more surgery- but not until she was a few months older. That was a relief. She’d have to go to St. Louis. But she would live.
That night we held her for the first time. She was totally unaware of what her future held.
Her blue eyes opened to the sound of our voices. We each held her. Through our tears, she was perfect. She was perfect, even being in the NICU with a tube suctioning out saliva she couldn’t swallow. She was perfect even surrounded by the monitors and the ventilator that she eventually needed to keep her alive. That same ventilator that kept her movements hostage and made holding her terrifying.
Though it all. She remained perfect.
We had to be flown to Boston for a very specialized surgery. She was two months old on life support. The surgery was new. The city of Boston was foreign. Jess and I climbed into the medflight jet. Little did we know what lay before us.
The day we left for Boston, the neonatologists came in to our pod to say goodbye. As they left, Dr. Batton turned around and said, “This is not the end, this is the beginning.”
He was right.
The hospital made an acceptation (usually children on vents, only parents can hold them) for Big sis Hannah to be able to hold her, because they didn't think she would be going home with them :(
Please take the time to listen to Rebecca's interview for Children's Miracle Network found on Jessica Smiles facebook page. It's very touching!
After Her Open Heart Surgery
Jessica just had her 2nd birthday!
SHE IS OFFICIALLY ON THE GO NOW!
Click on the link to her page and checkout it out! :)