The Highs and Lows

This afternoon, shortly after writing the previous blog post about our appointment today, Dr. Walsh called to tell us he spoke with Dr. Tworetzky. He said that we do not qualify for the Fetal Aortic Valvuloplasty because we have twins. There are multiple risks and technical difficulties they aren’t willing to take. Dr. Walsh asked if there were any other teams that do this and he said he didn’t know of anyone taking on that risk. He mentioned the possibility of a team in Texas, Dr. Walsh called them and they said they don’t do this.

A wave of emotion came over us. That feeling of being suspended and stunned hit again. Adam and I both found tears welling up. Why did we have the high of this hope today to only find ourselves being dropped into the low of this news? I asked questions I didn’t ask earlier because of this earlier hope.

  • What are the chances that this will develop into Hypoplastic Left Heart Syndrome? -Very likely.
  • What are the chances of survival of each surgery? -It varies from child to child but mortality is much improved since these procedures began in the 1980s.
  • What do we do now? -Monitor the heart through fetal echocardiograms every 4 weeks.
  • Is there ANY chance that this damage could slow down and not progress to the point of HLHS, giving him the chance of having the Aortic Valvuloplasty after birth? – There is a small chance of this. Given the early detection of this and damage seen so far, this is unlikely.

I heard “small chance”. I am clinging to this even if it isn’t likely. We are raw, numb and extremely saddened and we are choosing to believe that this small chance is still a chance. Several people have messaged- God’s plan hasn’t changed. His presence and hand on this baby’s heart hasn’t left. I don’t know why we were given this glimpse of encouraging news, for it to be taken away so suddenly. Why? Only God knows, and I’m praying for Him to give us reassurance as we embark on this journey.

I joined a couple of Fetal/Infant Congenital Heart Defect groups on Facebook. I want to see how God is working in the lives of others around us. To read stories of encouragement. To hopefully share some of these stories with you, our village of supportive prayer warriors. I know God is still here. He’s still holding us in the palm of His hands.

Please continue to for us. Pray for strength and peace that only God can provide, which passes all understanding. Pray that he slows the damage to Baby A’s heart, that He miraculously opens his aortic valve and relieves the pressure in his left chamber. Only God can do that right now. This is a very Bold Prayer, but what is faith without the trust and belief in the things we cannot see and cannot understand?

❤️ Amy

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