“You Have Never Failed Me Yet”

Today we had our second fetal echocardiogram, 4 weeks after the first one. They are so long and there is so much waiting involved. After an hour-long ultrasound, and waiting for the doctor, we got the news of how Baby A’s heart looks. We have prayed long and hard for damage to slow down and to not see a drastic decline in hopes that by the end of this pregnancy, he wouldn’t have the worst of prognoses to overcome.

The doctor shared that there is virtually no difference in the size of that left ventricle! There isn’t anymore damage than what was seen 4 weeks ago! All blood flow to other organs looks good and he is growing well. THIS is the power of prayer and evidence of HIS goodness! We don’t know what the weeks ahead will bring but we are rejoicing that we are not going downhill yet. Is there scarring? Yes. Is that left side struggling to squeeze because of the pressure build up due to his aorta? Yes. Could this progress and decline by the end of this pregnancy? Yes. BUT GOD! Nothing is impossible to Him. We are still praying and believing Him for a miracle of healing, or to at least continue to slow down this damage.🙏🏻

I asked the doctor if it would be feasible to get to delivery and there not be a huge decline in damage. He said, though it is likely this will happen, it is fair to have hope that it doesn’t based on how things look. We are happy to hear that it’s reasonable to have any amount of hope- though we have this no matter what we hear from doctors. I am keeping a prayer journal now. I want to keep track of my prayers so that I can give God the glory when He answers. Last night, one line from my prayers was, “Give us news of encouragement tomorrow”. I am claiming that answer to prayer today! I can’t explain the peace that this gives me. In the midst of a future that is uncertain, in this moment, I find peace. The strength of every family member, friend and colleague is carrying us through this. I don’t think you could even understand how much every word spoken to God on our behalf means to us. The depth of that love, the time it takes, the faith you are putting into action, it is the most amazing gift we could ever hope to receive.

Aortic Stenosis Repair vs. Hypoplastic Left Heart Syndrome Repair vs. Biventricular Repair

We would love for Baby A to never get to the severity of Hypoplastic Left Heart Syndrome and somehow only need repairs for his Critical Aortic Stenosis. After the prayer of miraculous healing, this would be our second prayer of course. In my recent research, I came across parents of babies that were able to avoid the 3-stage surgeries that are commonly used to repair Hypoplastic Left Heart Syndrome. As I mentioned in previous posts, HLHS requires 3 surgeries that allow the one working ventricle to do the work of two ventricles. Ultimately, this does cause potential harm to other organs and potentially require a heart transplant later in life. When digging deeper, I came across something called “Complete Biventricular Repair” or “Biventricular Conversion”. This procedure(s) is a possibility for babies who have a borderline (small) lower right or left ventricle. It involves creating two functioning ventricles in a single procedure. If that left side is too small, then the small ventricle may need to be rehabilitated through a series of procedures called “staged recruitment”. The ultimate goal is to have a heart with two pumping ventricles.

I asked our doctor about this and what his thoughts were on this procedure. He thinks that if our baby’s left ventricle doesn’t get to a high level of severity, this could be a good option for him. There is more risk, but long-term, these individuals grow up with less damage to other organs, a more robust functioning heart and less of a chance of needing a heart transplant down the road. Levine Children’s Hospital in Charlotte evaluates for this and does these repairs. The team in Boston, at Boston Children’s Hospital, pushes the envelope a little more and does more advanced cases. We will have the team in Charlotte, and likely in Boston evaluate our case for this potential procedure by our next fetal echocardiogram.

Please join us in prayer that we have this option down the road. Today’s appointment was encouraging and knowing that we aren’t in a worse position than we were 4 weeks ago is certainly good news! Click on the icon below for more detailed information!

❤️ Amy

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