Tuesday, September 30, 2014

A Year Ago Today

One year ago Matt and I were sitting in the pediatric ICU at Penn State Hershey Children's Hospital surrounded by a new world. A world that a week or so later would actually become some-what normal...and oddly comfortable.

A year ago today, a Monday morning, I took Nolan to our primary care doctor. I look back on how lucky we are now because our doctor got him in first thing in the morning. A 7:30 am appointment. Little did I know that by 3:30 pm my then 5 1/2 month baby boy would be placed on Life Flight. Death was near him. I look back on it now and I KNOW we were in shock. How could this be? How can this happen to us? These doctors are wrong!

Nolan - December 2013
A year ago today, if things did not happen the way that they did, I am not sure Nolan would be with us. From our primary care doctor who sent us to the emergency room at Williamsport Regional Medical Center, to the physician in the emergency room, the residents and nurses, the nurses in the pediatric unit, the girl that did our echocardiogram that immediately saw a problem, to the cardiologist who quickly made the decision to get Nolan to an establishment that could help him...ALL of these people were who made the first step to saving Nolan's life. I am forever grateful to every single one of them.

A year ago today our lives changed forever. We became a "heart family." Our life of fearing a common cold turned into a life of hoping we would just make it through the night. It taught me that we all TRULY do not know what tomorrow will bring you. THIS CAN happen to us. And we were determined to do whatever we could in this entire world to save Nolan. Money...never thought once about it. My family...that is all the mattered.

Nolan and Riley playing at our cabin this summer.
A year ago today Matt and I found a new part of ourselves. We realized how much you would sacrifice for your children. I would have done and still would do anything to trade places with Nolan. I wish I could take on all of his past pain and any other challenges that he will face. The fear of watching your child struggle is something I would never wish on anyone.

A year ago today we became new people. And I do believe for the better. I have high hopes for Nolan's future. All because of amazing people at Susquehanna Health, Penn State Hershey Children's Hospital and, of course, Children's Hospital of Pittsburgh. ALL of these establishments still care for Nolan both physically and emotionally. We are BEYOND blessed to be where we are today. I would have never guessed. I wish I could write more updates and post more pictures, but...HAPPILY...we are so busy being what we prayed to be again...a family. Days aren't always easy. We are still acclimating. We are still fearful at times. And in those times I do have to reflect to where we have been and where we are now.

A year ago today I never knew so many people could have love for one person. But now I see so many people within our community and Facebook that care DEEPLY for our little man. It's powerful and touching. I really hope someday he understands that he changed so many for the better. And because of him we have met so many people, rekindled old friendships, started new ones and really solidified where we want HOME to be.

A million thanks to all of you out there for being by our side and continue to be through our adventures. I will try to post when I can and DEFINITELY will try to be better with at least getting more pictures of Nolan up. He continues to do amazing. He is down to 1 - 2 feeds a day through his feeding tube, enjoys eating and is doing great at drinking water. He can walk while pushing his toy walker and I think he can say DOG. It is amazing to watch him grow and learn daily, and we are surrounded by an amazing team of nurses, OT and PT.

More to come on this adventure - I hope all positive. You are all very important to us. Much love.

#nhos

2 comments:

  1. What a lovely, lovely recap of your journey. I rejoice when you rejoice. I cry when you cry. I am happy to share Nolan's journey with others and to raise awareness. I have seen you all grow and mature and appreciate more --- more people, more ordinary every-day things, more everything. Bless your hearts, each and every one. And bless the donor family that made these new chapters of your lives possible. I am proud of all of you, cousin. xoox

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  2. You are correct in saying he has changed so many for the better. His strength continues to amaze me. But not only that... your words have also inspired me... to have faith in those around me, to believe in the power of love and prayer, and to be able to find the good in even the worst situations. You are truly an inspiration to this stranger.

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