Gathering Info

I first want to say thanks to Bethany for updating for us. Beth is a dear friend who so sweetly volunteers to pass information when Shane and I are unable to do so. She has been down the CDH road and has been an absolute blessing to both Shane and me.

Both tests, the echo and renal(kidney) ultrasound, were done today. The kidneys appear to have some calcium deposits but nothing to be too worried about. They are understandably "diseased" due to all of the things Avery has been through, but that is to be expected. The damage at this point does not seem to be permanent. The kidneys are functioning correctly at this point. The echo shows that the heart function is good. The valves are working correctly and blood is getting to Ave's lungs. All of that is positive information. So, we are still left with the questions about why Avery is puffy. When Avery was born she had two superior vena cavas. Normally, we only have one. This is a common variation of veins and normally not a huge deal. Now during the echo one of the SVC's could not be seen. This could be for numerous reasons but long story short, this may be contributing to Avery's swelling. The plan for next week is to put a catheter in (not too sure about how all that works) and possibly clear up any obstruction in the SVC that may be contributing to the swelling.

So that is where we are at with everything. It is all extremely overwhelming and please forgive me if I have not called back or responded to emails. I love all of you and we feel all of your love but I am just low on energy right now. Shane and I are only able to get through all of this because of the support of ALL OF YOU! I (or Beth) will pass along any changes. We love our precious girl and are holding her hands as she fights for her life. Thank you for holding our hands as we support her.

Carissa