One Month In

Wednesday, October 30, 2013

One Month In

Well, today marks one month since our lives changed forever. It seems like forever ago when we received the news that Nolan would be taken by life flight to Hershey Medical Center. It is so crazy waking up and doing your daily routine not knowing on that day EVERYTHING will change. I sometimes wish I could REALLY wake up and realize that this was all a crazy nightmare.

But...I have pinched myself multiple times, waken up mornings only to close my eyes again hoping I would wake up to a baby monitor of Nolan crying...but, this is reality. And with that, what else can we do but LIVE. We have to for, most importantly, Riley. She needs her Mom and Dad and to have fun, play and continuing living a two year old life. She reminds me that I can't crumble - I have to be strong to keep our family moving forward. And we are! Nolan has had an amazing week and I give a lot of credit to his dad. Matt has been such an advocate for him and a positive force for little Nolan. I hope this all continues when I am in Pittsburgh next week!

The doctors are super pleased with Nolan's recent progress. He has been fever free, off all antibiotics, receiving sedation meds orally, doing great during physical therapy and started bottle feeding today! He took in an ounce and held it all in! This is a huge jump for him! Our little man is coming around...it is such a blessing. If all goes well, he will be transferred to the step-down unit by this weekend. I can't believe where we started from and where we are at! It is truly like night and day. I used to take life hour by hour with Nolan...then day by day...now I am not really fearful for his life. Soon he will have his life back. I am so proud of him!

Tonight I had a nice dinner with a great friend of mine (who is also like family to us), Becky Shaner. She brought over some delicious Thai food, which Riley ended up loving also, and we shared some laughs and tears. It was really nice - THANK YOU, BECKY!

Ahhhh! Less than 2 days and I will be back in Pittsburgh. I am looking forward to spending time with Matt and having lots of snuggle time with Nolan. Miss Riley will be going to the Penn State game with my mom and dad...then head to Danville to spend the rest of the weekend with Matt's parents. We are all keeping her busy!

I hope everyone is having a great week! We are officially sliding into the weekend!

ONE MORE DAY CLOSER!

#nhos

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About Nolan

Nolan was brought by Life Flight to Hershey Medical Center on the evening of September 30, 2013. Earlier that day he went to the doctor for typical cold symptoms and was then sent to Susquehanna Health's Emergency Department for further testing and breathing treatments. After having many tests done, an X-ray showed what was believed to be an enlarged heart. An ultrasound confirmed this condition and he was quickly transported to the Children's Hospital at Hershey Medical Center. It was believed that Nolan was suffering from a viral infection in his heart called myocarditis, which is an inflammation of the myocardium, the middle layer of the heart wall. After going through a series of treatments at the Children's Hospital at Hershey Medical Center and not showing any improvement, the team of physicians felt best that he be sent to the Children's Hospital of Pittsburgh of UPMC.

Nolan was flown to Pittsburgh on Friday, October 4. After several days of observation, Nolan was diagnosed with dilated cardiomyopathy. He was placed on a ventricular assist device (Berlin heart) which pumped the left side of his heart. Nolan spent 101 days on the VAD. He received the gift of life on January 24, 2014. We are forever grateful to his donor family for such a selfless act. As their lives have changed forever, so has Nolan's. They gave him a second chance at life.