Preparing for Ronin’s open-heart surgery

Ronin’s open-heart surgery is tentatively scheduled for this Thursday, December 14.

The cardiology team had been weighing several factors and moving pieces in their determination of when Ronin should have this repair surgery. Generally speaking, the bigger the baby, the better the outcome; so there was some thinking that surgery might need to be pushed back until Ronin is closer to 9 months. But it was also a concern that he might outgrow the stent placed in his right ventricular outflow tract. The stent is only a temporary fix, this repair surgery should allow for much better blood flow and oxygenation through his body. Since Ronin has been putting on good weight and is healthy now, the date was set for just after he turns 6 months old.

Ronin’s congenital heart defect has been diagnosed as double-outlet right ventricle (DORV), pulmonary valve stenosis, ventricular septal defect (VSD), and atrioventricular canal defect (AVCD).

The heart is a muscle that pumps blood to your body and lungs. It has four chambers: the top chambers, the right and left atria, receive blood flowing into the heart; the bottom chambers, the right and left ventricles, pump blood out of the heart. There are also two big blood vessels that carry blood from your heart: the aorta and the pulmonary artery.

In a normal heart, the right atrium receives blood that has traveled through the body and has little oxygen left in it. The right ventricle pumps that blood out to the lungs through the pulmonary artery, where it picks up oxygen, then travels back to the left side of the heart before being pumped out to the body through the aorta.

Sometimes, a baby is born with a congenital heart defect, meaning that there are problems with the structure of the heart. “Congenital” means that the problems are present at birth, and happen because the heart didn’t develop normally during pregnancy. Double-outlet right ventricle is a type of congenital heart defect in which both the aorta and the pulmonary artery are connected to the right ventricle, instead of one to each ventricle. No arteries are attached to the left ventricle, which makes it hard for the heart to pump enough oxygenated blood through the body and lungs.

A baby with DORV also has a hole in the wall between the two ventricles, called a ventricular septal defect. The VSD allows oxygenated blood flowing into the left side of the heart to cross over to the right ventricle, and be pumped out to the body through the aorta. However,  because it’s a mix of de-oxygenated blood from the right ventricle and oxygenated blood from the left ventricle, the blood isn’t carrying enough oxygen as it should be.

In some cases, babies with DORV also have pulmonary valve stenosis, a narrowing of the valve that leads out of the heart to the pulmonary artery.

Lastly, atrioventricular septal defect is another type of malformation in which there are holes between the chambers of the right and left sides of the heart, and the valves that control the flow of blood between these chambers are not formed correctly. Ronin has a complete AVSD (as opposed to partial), meaning that there is a large hole in the center of his heart which allows blood to flow between all four chambers. There is also only one atrioventricular valve, instead of two separate valves on the right and left sides of the heart.

Ronin’s symptoms of these diagnoses have included:

  • Bluish, purple tint to his face and body when crying/agitated (cyanosis)
  • Poor weight gain in utero and during the first several weeks of life
  • Excessive sleepiness
  • Heart murmur heard through a stethoscope
  • Being a sweaty baby
  • Rapid breathing, always seeming out of breath

Up until this point, Ronin’s been on medications to help his heart function well enough until surgery was possible. But we’ve known from the start that surgical intervention would be necessary. On Tuesday, two days before surgery, we’ll meet with Ronin’s surgeon to learn more about what surgery may look like and what we can expect after. I have a vague understanding of what these next week will be like, but a lot of it will be us just taking things as they come.

I know that open-heart surgery means that Ronin’s sternum will be cracked to allow access to his heart. I know that Ronin will be in pain during his recovery, and that he’ll have to spend at least two weeks in the hospital. I know that it’ll be challenging having this all happening during the holiday season, and that we’ll be sad not having him home for his first Christmas. I know that this is a very serious procedure, and that there are risks of complications – risk of death.

I don’t know how stressful and emotionally exhausting these next weeks will be for me and my family. I don’t know a lot of the details of what lies ahead. But I’m becoming more comfortable in not knowing

– just letting go,

just trusting God.

His ways are higher than mine (Isaiah 55:9), His judgments are unsearchable, and His paths are beyond tracing out (Romans 11:33).

When I was stuck in the hospital for 40 days of bedrest before Ronin’s emergency C-section, I had a lot of quiet time to think and deepen my understanding of God’s character. This was one of my observations from then; the same holds true now:

These last several months have stretched and strengthened me in so many ways. I’ve been reflecting on the story of Joseph, from the Book of Genesis, and how God made him a path from a pit of despair to the Pharaoh’s palace. But not without trials, tests, pain, and waiting. Every message I’ve been reading in the Bible – especially Joseph’s – has shown me that God uses struggles and storms to ultimately bring about good. In his time of crisis, Joseph trusted that God was at work.

What is coming will make sense of what is happening now. God is at work every day, usually in ways that I’m unable to comprehend. He only wants me to draw nearer to Him and be faithful enough to trust Him in the midst of my life’s circumstances.

4 Comments

  1. Oh, my he’s getting so big! Look at your bundle of joy! Peace be still is what I just heard. I’m watching service now. Here is the link! Be encouraged Sis! https://www.youtube.com/live/1uqTsyb5Tcw?si=0Y3gqoMbPLLisqP6

    1. Thank you Sandra!

  2. We are praying for you all. We are praying for God’s very best. Our nephew had this procedure done when he was not yet three months old. He is now 6 years old. God had his hand on Ansel the whole time. He has Ronin right in the palm of his hand.

    1. So true, God is sovereign and in complete control of even the smallest details of life. Thank you for your encouragement. God bless.

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