When you hear February, what do you think of? This year, I think everyone in the Midwest would think of snow and brutally cold temperatures. Many people also think of Groundhog's Day and Valentine's Day. Hearts, candy and flowers. It makes me think of Hailey...her birth...and her heart. Congenital Heart Defect Awareness Week wraps up tomorrow on Valentine's Day. Hailey is one of the 50% children with Down syndrome that had a heart defect. Unfortunately, Hailey's was one that did require open heart surgery. Luckily, it was the most easily repaired. I'm thankful for modern medicine and the improvements in technology that allowed the surgeon to save Hailey's life. Years ago, children with Ds did not get early heart scans. In some countries, Hailey wouldn't have been able to receive her life-saving operation.
Ironically, February also starts Hailey's "annual" appointment schedule. We seem to always start with her cardiology follow-up. It's a quick appointment this time. Height, weight, questions, and an EKG. We aren't scheduled for an echo cardiogram for a couple more years. In my mind, I know that everything will be fine. She looks fine and she is exhibiting ZERO symptoms that would lead us to believe that her heart is not working correctly. However, it is very hard not getting anxious and worried about the appointment. I always question myself...are we missing something? Is there a symptom we are overlooking? Will we get in there and be snowballed with there being something wrong? I'm not sure how long I will live with that fear of something else being wrong with Hailey's heart. I have a friend whose daughter is a few years older than Hailey who says she no longer worries about her daughter's heart appointments. I hope I get there as we spread the follow-ups further and further apart. In the meantime, I will remember all those minutes, hours, and days that we spent watching Hailey's heart fail. I will remember that fear and anxiety as we waited through her heart surgery. But I will also remember that joy and relief we felt when we saw Hailey eat her first full bottle and saw her little, round face pink for the very first time (minus the blue undertones).
Guess I will do what I always do...cross my fingers and pray that the appointment goes as well as the last few!
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| Hailey a week before her open heart surgery |
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| The night before open heart surgery |
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| Wee hours of the morning of open heart surgery |
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| The day after surgery...when I realized everything would be okay |
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| First time holding and feeding Hailey after surgery |
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| 3 days after surgery |
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| Her healed beauty mark |
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| Valentine's Day 2012 |
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| Valentine's Day 2013 |
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| This doesn't fit the post, but I love the joy and love she shows for her brothers! |
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| Cheering with the cheerleaders at Ian's game |
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| Decorating her Valentine's box for her class party |
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| An early birthday celebration |
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| Even blew out her own candles |
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| Wearing a red heart for CHD awareness week! |
Sweet, sweet pictures of Hailey girl as a baby! I still have that fear every time we go to the cardiologist but we are also on the every 2 year check up plan now. I am hopeful that our babies will be just fine. So, so grateful for modern medicine!
ReplyDeleteIt's amazing how beautiful she looked before and after surgery. (Well, not so surprising considering how lovely she is, but she looked barely beat up at all.) I'm so happy our girls were able to have this behind them at such an early age, and so glad for us too. (And I just wrote a post for tomorrow that starts eerily similar to this one. :)
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