When the year comes to a close, it is part of human nature to reflect on those moments during the year that changed us, tested us, made us laugh, cry, and pray like we never have before. We reflect on those times we never thought we could get through with wonder and we take time to thank God for the miracles we were witness too.
This year tested our family like never before and brought us unexplainable joy. We spoke with our cardiac team about Fontan ( Xavier's third stage repair) only to discover that a valve repair would come first. We lived in the hospital for a month, watched our boy suffer and cry. We saw him as sick as he has ever been and spent many nights, mornings, afternoon crying out to God to help him, to heal him, to give us a clear path to recovery. We signed papers stating we understood the risks for surgery, the risks of a pacemaker, the risks of a transfusion or two. We crawled into a hospital bed with our baby and held him tight to try our best to take away the fear and pain. We held on with white knuckles to our parents, our family, our friends as X battled irregular hear rhythms, low saturations, plural effusions, an inability to eat, poop, sit up, breath. He got CPAP, oxygen, Chest PT, an NG tube....we added a EP doctor to our team and had to leave him while his heart was shocked back into rhythm....4 times...
We were overjoyed as we watch him slowly but surely come back to us. Our spirits were lifted as we walked out of the hospital with our child...fragile, skinny, in pain but ALIVE!! As the weeks ticked away we watched him get bigger, stronger, happier....as my belly grew bigger with our daughter. We rejoiced as we got the news that our fetus had a whole, healthy heart and as we got the report that Xavier's heart looked "beautiful" and better then ever. His repair was perfect, his saturations were higher then ever, his function was great and he was rockin recovery.
We worked hard on walking, talking, eating, sleeping...we had therapy four times a week, started a play group, took swimming lessons, went on vacation to the beach and took trips to visit family. We went to the zoo, the aquarium, the museum....we had fun!!!!
We cheered him on and cried out in praise as we watch him take his first steps, which soon turned into full blown walking....
Xavier enjoyed his first time trick or treating, thanksgiving with his great grandma, great aunt, nana and pap pap. He played in the snow, decorated the tree, made homemade ornaments, baked cookies and went to look at the lights...
And on Christmas Eve he became a big brother to baby Elliott..a heart healthy baby girl.
Our family was blessed to be supported and lifted up by many people over the year. It was a blessing
to be honored by Hayden's Heart Inc in February, we were showered by gifts and cards while X was in the hospital, we were blessed to be a part of the steps together race again this year and we rocked the roof off the joint at the X rocks the spot fundraiser hosted by 107 media and Bar A.
I had the opportunity to give back a little this year by attending the Hayden's Heart 5k, working on Philly Hearts with the Children's Heart Foundation, delivering care packages to CHOP for Hayden's Heart and working with dear friends to start a Philadelphia Regional Chapter of Mended Little Hearts.
2013 was a year that will forever define us as a family, as members of the heart community and as individuals. It has tested our resolve, strengthened our relationships, made us better people and opened our eyes to all the miracles, big and small, that surround us everyday. We ask that you continue to pray for Xavier and for our family.
Here's to 2014 and all the hope and promise it brings. We know that we are surrounded by love and that makes taking on a new year of unknowns much easier......keep on rockin team Xavier!!
