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.


Tuesday, September 9, 2014

Summer's End

I know - it's been forever! I do not even know where to begin. Truly...no news is good news around here. We are on a pretty normal weekly routine and our summer weekends were spent out at our family cabin. Needless to say it was a fantastic summer. It is hard to believe September is here. This month sticks out to us like a sore thumb. Almost a year ago our lives changed forever. For some reason my anxiety level has heightened even more with the start of this month and flashbacks are present again...especially the beginning days of our journey. As much as I really do not like to dwell on the past, it definitely haunts me from time to time. I never want us to go back there. I fear it everyday.

BUT, then I bring myself to reality. Nolan is doing amazing. I mean, if he didn't have that NG tube in his nose, I seriously would never have guessed this little man has had a heart transplant. He is cruising...really ready to walk any time now, his eating is getting MUCH better and he is drinking water like a champ. He had a routine cardiology appointment at Hershey yesterday and Dr. Dispenza continues to be very happy with how everything looks. Our next appointment is on Monday with neurology at Hershey to discuss his past strokes and the keppra he is on (which is a preventative anti-seizure med). Hopefully we can begin to wean this drug off.

Gosh, so many other things have happened, I am really not sure how to catch up. I think it may take me a bit, but I do plan on providing a little update weekly. Currently Riley is doing tumbling and t-ball, and Nolan is busy at home with our awesome nurses, PT and OT quickly catching up on his milestones. We will be getting him in soon to get his flu shot and whatever other immunizations he is allowed to receive. Because of Nolan's immunosuppression due to the anti-rejection medication he is on, he is not allowed to receive live-virus vaccines, such as measles, mumps and rubella. This also means if Nolan were exposed to any of those viruses that he can not be vaccinated for, it puts him in a serious risk of major illness, even death. (Getting on my soap box...) Take time to learn more about the importance of vaccinations for your family, friends...and kids like Nolan! http://www2.aap.org/immunization/families/faq/whyimmunize.pdf

Anyway, Matt and I are doing well, also. We are both trying to get back into a workout routine, keep busy with work and even getting out with friends. We are very fortune to have such a supportive family that allows us to get out and have some US time! We are even planning a vacation ALONE in February! Yikes!

LAST, but not least...Nolan's Heart of Steel is teaming up with Ellie's Heart Foundation and Hayden's Heart to host a blood drive on Saturday, October 18 from 10 am - 2 pm. When planning this we thought we could all be in town, but unfortunately that is the weekend of Nolan's next biopsy! Anyway, I hope those locally can make it to the Genetti Hotel and contribute to this amazing cause. I can't even tell you how many blood transfusions Nolan received while at CHP, but I know that the American Red Cross is ALWAYS desperately needing blood donors. Click HERE to sign up to donate!

Well, I am off to bed. I will post some more pictures on Facebook this week!