Our dreaded appointment with the cardiologist, going over the autopsy results. Well it was NOT a dreaded appt. after all, it was refreshing as refreshing could be for such what it was. Dr. Puchalski, I absolutely love that man, he is the complete opposite from what I remember our first visit to be. I reached out to shake his hand, he said no, pulled me to him and gave me the biggest and tightest hug I have ever received from a doctor, besides my sister. He said, I am so glad you guys decided to come in, I think its good to get closure, we couldn't have agreed more.
The words on the 9 pages were a bit bigger than my vocabulary can handle.
Long story short it was not exactly what the in utero diagnosis was. Orginally they thought she had the left ventricle, a common atrium, aortic atresia and she had fluid that came and went around her lungs. Well the findings were that she had Hypoplastic Left Heart Syndrome (HLHS), total anomalous pulmonary venous connection (TAPVC) and 7 other defects with her heart. In additon this sweet baby had Pulmonary lymphangiectasia which in english translates to dilation of the lymphatics in the lungs. I was overwhelmed with the amount of issues with her heart and both Steve and I felt relieved when we left there knowing that her passing was by far the best thing for her. I couldn't imagine her quality of life being that of which I had only dreamed about. She now has the perfect life, one that we only dream about.
We are so sad to not have Avery with us today and everyday, as the weather gets nicer and the days pass by......all I get to do is imagine what she would look like today, what she would be accomplishing and the fun times she would be having with her brothers who adore her even though she is not here in person.
A wonderful friend who had lost here son to SIDS a short time ago, brought us over 3 piggy banks for each of the boys. She said that each time you see money on the ground that is Avery saying hello to you. The little boys think that is the cutest thing and everytime they spot money, I hear them say...Avery is saying hi! It may or may not be true but for some reason before we got the banks..I told my friend that I kept finding dimes everywhere I went lately..and now we are believing she really is saying hello to us. A simple tender thing that puts smiles on our faces and in our hearts. The simple things make the hard things seem much easier to bear. I for one always try to see the bright side of things and make the most of any situation, this one has been the most challenging to accept but I believe that acceptance is part of my journey. I will learn acceptance graciously today.
Disney World 2017
7 years ago