365 days since my beautiful baby boy had his open heart surgery and bravely fought his way to recovery. It has been 8,760 hours since our lives changed forever.
When Tyler was born, we were so relieved he was healthy and perfect, and we had no idea what was about to happen in a few days. My daughter Julianna had a brief stint in the NICU after she was born for a small pneumothorax. So with Tyler, when we were discharged to go home, we were relieved and thrilled to be going home with our boy.
A few days after we were home, Tyler was brought to the ER by my husband on a Thursday evening, and nothing was the same after that. Click here for Tyler's story.
In the last year, we have celebrated many milestones as you would with any other baby. HERE is his "One Year Old" post from the other day. Tyler has grown and developed into the most amazing little boy, who is clearly meant for big & amazing things in this world. He is such a special little boy and I love him more than I could ever possibly put into words. I never knew how much I would fall in love with this little boy, because it's so very true what they say about moms and their little boys. Please don't take it the wrong way, Julianna is my beautiful little girl who I love so so so very much! You just never quite understand how much room you have in your heart for each child until you actually have them. It's really quite incredible.
Tyler's smile lights up a room and his personality is happy, beautiful and loving. He is so innocent to the world and the bad thing he went through in the beginning of his life. He loves to be held all of the time and snuggle with mama and daddy. It makes me sick to think 20 or 30 years ago, babies passed away from heart defects because the CHD/TAPVR surgery just wasn't in existence yet, and no one operated on baby's hearts back then. God Bless modern medicine and the surgeons NY Presbyterian Children's Hospital (CHONY) ... and of course the pediatric cardiologist that found his defect in the ER. They saved his life and they are the reason Tyler is here with us today.
In the last year, Tyler has been to a multitude of doctor appointments with the pediatrician, cardiologist, neurologist, had blood drawn more times than I can remember, was on Digoxin heart medication for 6 months, came home with halter monitors for 24 hours several times from the cardiologist, had his 'early intervention' appointment, and an ER visit. Not a day goes by where I think I need to check him while he's sleeping because I ask myself "What if his repair gives out?". I am always watching him to make sure he doesn't turn blue (a common symptom of CHD babies, even the 'repaired' ones). This all gets easier with time, but I don't know if it ever truly goes away. We as parents will always worry about Tyler's heart health, and will always stay on top of everything, and educate him so later in life, as an adult, he stays on top of it too.
One year later
Tyler is off all medications & he now sees his cardiologist every 3 months. His future prognosis is a positive one and we pray he will never need any further surgeries. Nothing in life is guaranteed though. There will always be a risk of a side effect from his heart surgery. As his heart & body grows, all the repaired parts need to grow with it. The biggest long-term risk for him is stenosis of the (repaired) veins, and this will always hang over our heads. Any time a cardiologist appointment is coming up, I can't help but think, are they going to find something wrong this time? Will this be the time they see something not growing correctly? I don't spend my days worrying about this, but it is always a concern to us.
I see his scar every day, and while it is part of Tyler, it is a true-life reminder of his congenital heart defect called TAPVR. We will continue to move forward and heal with him. I will help spread awareness through my blog, facebook page and raising money through the CHD Coalition in NJ each year.