…but I did.
I started researching pediatric open heart surgery. It’s better to be informed, then go blindly along right? Perhaps, but I feel sick to my stomach now. The Cincinnati Children’s site was informative. However, it just doesn’t feel right to think about AJ and read things like this:
Open-heart surgery generally refers to operations performed on the heart that require a patient being placed on the heart-lung bypass machine. The heart-lung bypass machine takes over the function of the heart and lungs to provide oxygenated blood to the body.
The heart can be stopped with a solution called “cardioplegia.”
Cold saline irrigation (salt water) over the heart is used to protect the heart while it is stopped and without its own blood supply.
To get access to the heart, the surgeon has to open the chest; cut through the breast bone (sternum). This is referred to as the sternotomy.
After the chest is opened, a part (or all) of the thymus gland is removed.
The heart sits in a thin, leather like sac called the pericardium. To get access to the heart, the pericardial sac has to be opened. The surgeon often removes a small portion of the pericardium, to be used later to patch holes in the heart.
The risks of bypass itself include inadequate perfusion of organs or tissues, activation of a systemic inflammatory response, and embolization of air or particles.
Both air and clots can break lose and embolize, and can cause a potentially dangerous event such as stroke.
The need for re-operation for bleeding following open-heart operations is low, about 1 to 3 percent.
Atrial septal defect occurs in about 6 percent to 8 percent of all congenital heart defect cases.
Ninety percent of ASDs require no treatment, because they close by 18 months of age.
Some patients require temporary or even permanent pacing.
My heart hurts, my stomach is churning and I’ll go to bed tonight praying for a miracle. Praying that AJ won’t keep dropping down the growth curve, praying that her heart will be perfect the next time they hook her up to a machine, and praying that I never have to sign a paper giving a surgeon permission to stop my baby’s heart, permisson to let them keep her alive on a machine because she is less likely to die THAT way.
Chemically Inclined 
I like this quote: “Ninety percent of ASDs require no treatment, because they close by 18 months of age.”
I love this verse: Isaiah 41:10
“Do not fear for I am with you, do not be afraid for I am your God, I will comfort you and uphold you with my righteous right hand.”
That quote has my hopes up. It was so nice to read that even within the medical community there is a chance for it to close up. And of course there are always miracles. Thank you for the verse.
No worries, the Lord is in the Miracle Business you know. 🙂 How are you holding up?
I’m okay, I have 6 more months before we find out so we are just focusing on what we can do now. Trying to get Ade to eat more, but she seems to notice and then not want too. She has always been an awesome eater though, not a single thing she won’t eat. Plus, she eats a ton! Just don’t get why she has dropped down the growth curve so much. At least she has been gaining some weight, not exactly sure where she is putting it in that 18lb little body. 🙂
So, I have a question? Is trying to make her gain weight “cheating”? If not, then you need to go to Smith’s Market for Flax Seed Oil. Tastes like nuts, hides well in oatmeal, sliced bread, toast, PB and J etc. We used it for 18 pound, 1 year old Destiny, who we desperately wanted to turn forward facing. It worked, she hit 20 pounds in NO time! It’s a “healthy fat”, so no worries!
Honestly? I don’t think it is. Plus Dr. Allen simply said to encourage her to eat healthy, nutritious foods. I will look into it. Destiny was 18 lbs?? You know, that makes me feel a little better in a way. AJ is 18.2 lbs now at 14 months. Of course, he wasn’t as concerned about her being small as he was with the dramatic drop down the growth curve with her being healthy anyways. Thanks for the suggestion!!
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