Today seemed to be an even harder day than yesterday. The good news was that the fluid they drained yesterday had seemed to have only started to come back slightly which was amazing. The bad news – fluid has started building up in her abdomen, skin, and skull which is a sign of Hydrops which is almost always fatal if not resolved.
At first the doctor did not believe that the there was enough fluid in her heart to move forward with placing a shunt tomorrow but decided based on the other Hydrops that we needed to go ahead and try. So tomorrow we will come back to have a shunt placed that passes from Sloane’s heart to the amniotic sac to keep the fluid draining constantly.
The doctor also decided to go ahead and give us steroid shots that help develop the lungs. Although it is still way to early for Sloane to be born given the health issues she faces the steroid shots have also in some studies been shown to slow the growth of other heart tumors. It isn’t a sure thing by any means but it certainly won’t hurt in the long-term either.
I also went through about 2 hours of baseline testing to gather some data on me. One of the big risks currently is that I could begin to develop what is called Mirror Syndrome which means my body could start experiencing the same symptoms as Sloane. This would definitely further complicate things and the baseline tests all came out good so we are hopeful I will avoid developing this.
Perhaps the hardest part of the day was making a plan for what to do tomorrow is Sloane doesn’t handle the procedure well and needs to be delivered. Those are discussions that truly no parents should ever have to have. We pray we continue to make the best and most compassionate decisions for our girl.
