You already know that Parke is teaching our family a lot about life. He is teaching us to trust, teaching us to love more fully, teaching us that family doesn't mean blood, teaching us that joy can be found in the midst of trials, and so much more.
Beyond all of that, there is something that I have learned through his life that I would like to share with you....
This week, February 7-14, is Congenital Heart Defect Awareness Week. I'm not asking you to share this, to wear a certain color on a certain day, or anything like that (not that there is anything wrong with those things). I just want to share...to tell you what we have learned over the past several weeks.
While we were at ACH, I found out that 1 in every 100 babies is born with a congenital heart defect (CHD). I also learned that CHDs are responsible for the most deaths in the first year of life than any other birth defect. I really had no clue! I totally took for granted that Landry and Collier were born with no complications.
Some CHDs require surgery, some do not. Some can be lived with, others cannot. There is so much information on the internet about these conditions, and if you're interested in doing some research, there is a lot to learn!
Also, I haven't shared before, but I am going to list Parke's heart conditions for you. I've had several people ask, especially those who have found our blog through having their own children with heart issues. There is a big community!
I'm copying these directly off of the discharge papers from ACH...I am NO expert on what each of these are, but we have been studying up and learning a lot about our sweet boy's heart. He is extra, extra special!
Parke's conditions are:
Complex Congenital Heart Disease
Hypoplastic Left Heart Syndrome
Double Outlet Right Ventricle
Mitral Atresia
Hypoplastic Aortic Arch
Coarctation of the Aorta
Tricuspid Insufficiency
Small Atrial Septal Defect
Parke is amazing. He is a miracle. He is the strongest person I know, and I will say it again and again....I am PROUD and HONORED to be his mama!
Day 33!
Hi! I found your blog after a friend liked this post on Facebook, and the picture looked familiar. I am pretty certain I ran into you and your sweet Parke yesterday at Gap. It was so obvious the love you have for your son, and God's love was also just as evident in both of you. I hope you don't think this is crazy that I'm posting a comment, but I just wanted to let you know that I will now add myself to the many who are praying for you all. You told me Parke was a month old when I asked how old he was, and now I know how incredible that is. Happy day 33!
ReplyDeleteOh my word, Kate...you have no idea how special it is that you commented! I was just telling a friend yesterday that it was kind of hard to be out and people ask how old Parke is (thinking specifically of you being so sweet!)...it makes me want to stop in the midst of errands and tell them the whole story. So glad you found our blog, and now you know. :) Thank you for the prayers!!
DeleteHello- I just found your blog and shed tears over your loss. I have a dear friend who is also walking this path, she has written a book about her son who was born with his heart outside of his chest among other heart defects. His name is Ryan and continues to baffle doctors because God is bigger. Her blog is "Living with Three Hobbits and a Giant." thought you might be able to relate to some of the same things she has and is going through..God Bless Kelly K
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