In the midst of moving last summer we become pregnant with our third child! This made all the kids just about 2 years apart, close but not too close :) We were really excited when the day came to find out if we were going to have a third musketeer or have a little princess. During the ultra sound the tech couldn't get a clear picture of our musketeer's little heart. He was lying in a way that blocked the view (turns out this was his favorite position). As a result, we were sent to a clinic with superior machines that get clearer pictures. This is were we got the news. Our little guy has two holes in his heart.
His condition is called Atrioventricular Canal Defect (AV canal). The walls that create the four chambers of his heart are not complete. They found that the wall between his atrias, or upper chamger, had a large hole and several small ones. They also discovered another small hole between his ventricals, or the lower chambers.
When we found this out the doctor suggested we get a blood test done to find out if he had Down Syndrome too. About 40% of babies diagnosed with AV canal have Down syndrome as well. About a week later we got the results, positive for trisomy 21 (Down syndrome). *On a side note, the blood test has only been available for a couple years, and its pretty cool. They took my blood and were able to pull out the baby's blood and perform the DNA tests on it. Cutting edge technology.
This was a lot to digest. We were in shock considering we already have 2 healthy and even chromozoned childern. John was immediatly ready to take on the challenge. I however was a mess. There was so much to learn and consider. My world suddenly become a huge "What If". Thankfully, the rest of the preganacy went well and so did delivery.
That brings us to now. Thomas is doing ok with his little holey heart. He's not thriving but isn't in terrible condition either. He's currently on a medication the helps his body get ride of the extra fluids that has been building up in his lungs becuase his heart can't push it out. But this makes him lose weight. So we're in a constant battle of gaining and losing weight, and keeping him functioning as well as possible.
We will inevitably lose the battle unless we are able to have open heart surgery to repair the walls. This were you come in.
Right now the surgery is projected to happen in September. We aren't sure what exactly our insurance will cover, but we do know that there are and will be many more copays. We also know that the surgery will require him to be in the hospital for 7-10 days in a hospital two hours away from home. So I or John will be away from home for at least that long. We will need some where to stay and means to drive back and forth. We also know there will be more medications and tests before and after the surgery. We have learned that with Down syndrome we will need some special things that the other boys did not need. There are also many hidden cost expenditures; like more formula, specialized therapy tools, and more frequent doctors appointments and tests.
We have taken appropriate steps, such as applying for Social Security, and other funded programs, but we are not qualifying for them. I guess we are too prepared to utilize these programs. However, we are not finanically prepared for this.
If you would please help us by donating, we will forever be grateful. This is something nobody is prepared to handle and so we reach out to friends and family to buoy us up.
Update: Thomas's open heart surgery has been scheduled at Doernbecher Childrens Hospital in Portland for Tuesday August 19. We will have a sedated pre-op appointment the day before. We should be in Portland for 7-10 days. Thank you so much for all your support!
"Of all machines, the human heart is the most complicated and inexplicable." - Thomas Jefferson
“Let us relish life as we live it, find joy in the journey, and share our love with family and friends.” - Thomas S. Monson
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