Two medical terms that was once foreign to our family has now become a part of us. Our beautiful heart baby was born 2/24/XX, the last child of 5 children. Our daughter was initially "diagnosed" in utero so we were about as prepared as we could be. Besides her CHD she was completely healthy and had a brief stay in the picu after birth. She had her first procedure (DKS) at 5mo then her second (bi-directional Glenn) at 10mo and her final procedure at 3yr (Fontan). Medically she has overcome so much but she's never given up. She's definitely kept us on our toes and never let her CHD stop her from taking risks in life and certainly didn't let it debilitate her in any way. Now 12yr old and in 7th grade she's anxiously awaiting soccer try outs this year. Looking back over the years and feeling grateful for every birthday we celebrate pays off for the many days & nights of worry, trying to understand terminology and knowing you're one step closer to going home as each tube is removed. Yes, that was our life but we made it and I have faith that we'll soon be checking off many milestones to come.
We heard about Nick & Kelly years ago when we would see Dr. Bowen at the CRA clinic. I was too nervous to send her to camp until this year when she saw Dr. Stock. When he described camp to her she was very excited so I let her go. She had an amazing time and is looking forward to going again next year.
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