1 week post-Norwood

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Santi is 1 week post-Norwood today! I hold my breath every time I say this, but...He's doing great!

 

WARNING: graphic photos

We were debating about posting these photos.

They are graphic and painful to see. But in the spirit of full disclosure and helping future HLHS families understand the reality of the situation, we decided that it's best to share.

 

 

 

 

 

 

 

 

 

3/27 - Day of surgery

 

3/28 - Recovery, Day 1

 

3/29 - Recovery, Day 2 - Chest is closed!

 

3/30 - Recovery, Day 3 - getting wiggly

 

3/31 - Recovery, Day 4 - reconnecting with Dad and the pacifier

 

4/1 - Recovery, Day 5 - First food ever and first post-op snuggle sesh with mom

 

4/2 - Recovery, Day 6 - just being a baby :)

 

Meeting Dr. Starnes

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Abe and I met with our surgeon today, Dr. Vaughn Starnes.

As soon as we found out that Santiago had HLHS we were on a mission to find the best resources possible. Living in San Diego, Rady Children's Hospital would have been the natural choice, it's a great hospital. But as any parent knows sometimes "great" isn't enough. I wanted the best. I needed the BEST.

After a lot of research, and even considering Children's Hospital Boston (the country's top neonatal cardiac hospital) we decided on Dr. Starnes at CHLA. After meeting with him today we are both confident that we made the right choice.

He told us that considering the circumstances, Santi's heart is in relatively good shape and that he is a great candidate for the Norwood-Sano surgery. The Norwood-Sano will take place 3-5 days after he is born.

This is roughly what we can expect following the surgery:  5-7 days in the cardiac NICU, followed by 3-4 weeks of recovery in the hospital. He will have a feeding tube that goes through his nose, among other tubes, wires and monitors.

Everything mentioned above is the "best case scenario." There is always a risk for infection or other complications. We will do everything we can and the doctors will do everything they can.

             For a better understanding, here is a picture showing how his heart is different from a healthy heart