Our daughter, Lily Grace, was born to heaven on June 6, 2010. She was diagnosed with alobar holoprosencephaly (HPE) and a rare arrangment of trisomy 18 (isochrome 18q). To learn more about our experience, you may want to start at the beginning. Read Lily's Story: from Beginning to End, which is one of the first blog entries on June 24, 2010.


He heals the brokenhearted and binds up their wounds. Psalm 147:3

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 2 Corinthians 4:16-18

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalm 46:1


Sunday, August 19, 2012

Ainsley's Surgery

What a mix of emotions the last couple of months have been! We have been mentally preparing ourselves for Ainsley's upcoming open heart surgery while at the same time trying really hard not to think about it. We tried to squeeze in as many summertime activities as possible as if we would never have another opportunity to do them all again. We stayed so busy that I was doing a fairly good job of not focusing on the what was to come...until we met with Ainley's surgeon. We requested this meeting to have the opportunity to ask some of the questions that we had without having to wait unti her pre-op meeting the day before her surgery. It was a good meeting with a lot of information to absorb. After a lengthy explanation about the procedure itself and all of the reasons why it is needed at this time, the Dr. went on to explain some of the associated risks. The surgery itself is generally very successful. In fact, there is 99% success rate. The surgeon had drawn a visual aid of the heart chambers and focused on the area of her heart that is in need of repair, and he used this same drawing to write out some of the potential risks such as a faulty electical system, which would require a permanent pacemaker, blood clotting or other blood related issues, brain damage and death....next to each one, he jotted down 1% or 2% indicating that there really is such a small chance that any of these could occur. He acted as if these statistics should make us feel more at ease about the surgery, but as I listened to him talk and I watched him scribble 1% next to each risk all over the picture meant to indicate my baby girl's heart, I kept thinking of Lily. There was only a 1% chance that we would have a baby diagnosed with Trisomy 18, and we were in that 1%. Just because 1% is a small number doesn't mean that it can't happen to us. Because of Lily, I can never live in complete ignorance to the possibilities. I know that I am not immune. We shared our experience with the surgeon that day. We knew that Lily's circumstance has nothing to do with Ainsley's condition, but he listened intently, looked into our eyes, then back down at the paper, and he noticed how many times he wrote 1% next to a devastating potential risk of a surgery that we chose him to perform on our baby, and he got it. That felt good. I know that the doctor doesn't have complete control over the potential risks of her surgery, but at least he knows who we are and where we've been. He empathized with us that day, and hopefully, on surgery day, he will acknowledge that our fears and worries may be a little more heightened than someone else's, but I don't think that any parent would feel overjoyed to face an open heart surgery on their baby, and I'm sure he is used to dealing with parents who are scared. I will continue to post updates on Ainsley's surgery and recovery on her caring bridge for anyone interested in following our journey.