9/5/9 Update – 4 weeks to go.

It has been quite a ride since finding out @ 20wks (gestational) that something is wrong with your perfect little angel. Digesting those words is much like chocking down a bowl of shared glass for breakfast. However, our decision was clear; the only way that our little boy is going anywhere is by Gods hand, we would do everything and anything.

Each ECHO was a nerve-racking ordeal, would things get worse, would they get better or stay the same? We’ve had varying degrees of good, bad and indefferent news. From possible heart arythmias and leaking AV’s to heart arythmia’s disappearing and leaks stopping. The scans were able to tell us that Aiden has:

- Unbalanced AVSD w/ Pulmonary Atresia – Basically Aiden’s heart hasn’t formed like it should have. He’s missing some stuff, including the “Pulmonary Valve” so that blood can’t flow from the right ventricle into the pulmonary artery and on to the lungs.

- Heterotaxy Syndrome – He has some organs including his stomach on the other side of his body. They are not sure if he has a spleen or not (they’ve possibly seen some splenic tissue but arent sure) and if there is a problem with Malrotation (intestinal twisting).

We now know that during week 5, there was supposed to be a “swap” happen inside Aiden, it didn’t. There is no known cause of why, it could be genetic, could be random, could be just about anything. Not enough money is spent on research to find out why this birth defect (the #1 in the country) occurs.

In between all of the tests for Aiden, Tracy had failed her glucose test, which meant she had gestational diabetes and would need to control her blood sugar so that Aiden wouldn’t get too big. So now she religiously counts her carbs and checks her blood (which just isn’t fun), she’s given up a ton of food she likes all for Aiden’s sake, and I’m really really proud of her for that.

We’ve been blessed enough to have top notch specialists in Aiden’s care. Of the 2 Cardiothoracic Surgeons they have done a combined total of roughly 8,000 to 9,000 children’s heart surgeries. I still can’t seem to process that, imagine, performing the most complex of surgeries to try and save 9,000 babies. These men deserve medals at the very least.

Yesterday 9/5 I spoke with one of them. He doesn’t exactly buy stock in ECHOs and rightfully so, as he said, it’s a scan through Tracy’s tissue and bone then through his tissue and bone — he won’t give a definitive plan until he has ECHO results on Aiden himself, and quite possibly an ECHO may not tell them exactly what they need to know  and a cathederization will be done to show a much clearer picture. If the best situation presents itself, a shunt will be placed on his pulmonary arteries that will carry blood from his heart to his lungs. Luckily, Aiden’s AV’s are not draining into his lungs, we were told that if they did, it wouldn’t be a very good outcome. He did however say that this is a complex surgery and that shunting can go very wrong very easily but that he would do everything in his power. Again, he said depending on the circumstances, a heart transplant may prove to be the best option. Time will tell.

I admire that Dr’s brilliance as much as I admire his complete honesty. I have full confidence in the teams from the University of Colorado and Children’s Hospital in Denver. Touring the Cardiac Intensive Care Unit we’ll be most likely getting a private room, a pullout bed which we can sleep on, right beside our beautiful little baby boy, especially during the first 24 hours. Just as the first surgery itself is important in understanding how the others will go, but the first 24 hours are the most critical in his life.  The nurses seem amazing, and in the CICU its a 1×1 ratio of nurses to patients.

So the plan is to deliver as naturally as possible (with the exception of a mild epidural) at Univ. of Colorado where God willing we get to hold him for a little bit before they start the rounds of testing (which will be done @ Children’s Hospital nxt. door).

There’s no way of knowing what to expect, how far in either direction good or bad it could go. But Tracy and I have each other, God, friends and family to rely on. We’re praying for the best, especially for Aiden — it’s not about us, it’s about him.

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I’d like to thank all the baby center mothers. I appreciate all of your advice, wisdom, stories and prayers. I’d like to link to all of your blogs so if you read this please post your blog or website URL below. Thank you.