Nolan went into surgery this morning at 8:45 am. The surgery took about 4 hours. It was a successful surgery and now Nolan has a Berlin Heart that sits right below his chest. This was an open heart surgery where they actually had to stop his heart to place it on a bypass machine while the surgery was completed. Now the Berlin Heart beats for the left side of his heart. The next 24 hours will be a critical time for him where he will be closely watched. I will place pictures of the Berlin Heart sometime in the near future when his incision area is a little healed and when his breathing tube has been removed.
So, it was quite a site to see Nolan after surgery. While we are relived it is over, we also are looking at our son who just had major surgery and has an incision in the middle of his chest. I will be honest in saying that I am kind of at an angry stage of all of this. I am SO thankful for modern technology and the fact that this VAD will save his life until he receives a heart - but, I think it is all hitting me. This is really happening. My son's life is in the hands of the people here at Children's Hospital, and I can do nothing but hope and pray that he will stay safe. It's really a stressful situation...as parents we become so protective of our children. I just wish I could scoop him up and hold him...magically make this all go away. Reality really does suck sometimes. (again - sorry for the anger and negativity)
After the next 24 hours, we will begin to see Nolan do MUCH better. His heart function will be normal, he will be taken off of his breathing tube, we will get to hold him, bottle feed him...snuggle. I can't wait.
Matt left with my dad today and will reunite with Riley. He will be at work this week, then the following week I will be home. We will then rotate weeks...with some weeks me being home more than Matt. My mom is here with me, which I am so thankful for. Tomorrow, Fred and Janice Springman are coming. I can't wait to see Jammie and Grampie.
PLEASE, PLEASE keep the prayers coming the rest of the day and through the night. I am anxious for the evening. I thank you all for the love and support.
Love,
Cori
Praying for a good night after his very big day! You do not have to be sorry for ANYTHING that you are feeling. You are being human and you are one of the strongest people I know, for sure. I can't say that I would have been like you to this point, you need to give yourself a lot of credit. Enjoy your family this week and especially the time with your mom. Thinking of all of you and Nolan always and a little extra tonight : ) Prayers and love- Shaylene
ReplyDeleteYour strength through this is and has been amazing and inspirational. It is only natural to feel angry and helpless while your precious little baby suffers. Be assured, your hopefulness and optimism shine through far more than any bitterness in your words. Our hearts and every thought are with you, and we're willing little Nolan to pull through this and have the best possible outcome from his medical treatment. If there is anything at all we can do to be helpful, we are here for you. Love and hugs, Margie and Zoner
ReplyDeleteWe're still thinking about you.... Miranda is not happy at all that you, your son and your family are going through this. We will be sending a care package and everything picked specially by Miranda herself! Sending prayers for a quiet restful healthy night for everyone.... <3, Theresa
ReplyDeleteHoping Nolan had a good night and you start to see the impact the VAD has on him very soon. Being angry is okay -- don't be upset by that. It's a lot to take in, especially in such a short amount of time. Your strength has shown through this entire time; remember you are only human, and you are doing the absolute best you can. In my eyes, you are doing amazing. Lots of prayers and love being sent your way, my friend. I hope you can have some more snuggles with your little guy very soon. <3
ReplyDeletePraying constantly.
ReplyDeleteSr. Ann Marie
Cori,
ReplyDeleteI am praying for Nolan. My daughter Eleanor Lily, was also sent from Williamsport to Hershey after a diagnosis of dilated cardiomyopathy. (She was treated by Dr. Steve Cyran, Dr. Beth Adams, Dr. Saini... but we also saw Dr's Wolf and Drs Paulicks ). We never made it to Pittsburgh for transplant evaluation. I would encourage you to join the Children's Cardiomyopathy Foundation's group on Facebook.
Also, My husband and I founded Ellie's Heart Foundation in November to help support the Children's Heart Group. Please feel free to contact me at Elliesheartfoundation@yahoo.com. Nobody quite understands the hell that is pediatric cardiomyopathy except the families that have lived it. Much love and many prayers to you. Jennifer Ayers