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Hopeful Hearts

At 20 weeks, Emmy was diagnosed with Heterotaxy and Dextrocardia with Situs Inversus. We invite you to walk along side of us as we set forth on this journey that The Lord[...] read more

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Update!

This last week was a week full of doctor appointments for Emmy! We saw our pediatrician for a weight check, and she is continuing to gain weight well. She’s in the 12th percentile now! We also saw Dr. Horwitz who is a pediatric general surgeon. GI and the heart surgeons wanted us to consult with him to get his opinion on whether or not Emmy’s malrotation will require surgery. He said he does NOT see any reason to operate on her! This was great news!

On Friday we saw Dr. Stewart for Emmy’s monthly cardiology check up. While Emmy is doing great, she is thinking surgery might need to be in November, which is little sooner than we anticipated. The highest oxygen reading we could get yesterday was 84, and last month it was 87. She is starting her on a medication that will help her oxygen level increase, which may help us buy an extra couple of months before needing surgery! On August 26th, Dr. Stewart will be presenting Emmy’s case to Dr. Fraser and Dr. Mery (heart surgeons) and the rest of the cardiac team. The surgeons, cardiologists, and many other people will discuss Emmy’s anatomy and what they believe will be the best plan for her heart surgery. Dr. Stewart did mention that she isn’t sure that Dr. Fraser will be able to perform the “preferred” repair method on Emmy’s heart, a biventricular repair. Up until now, everyone seemed to be in agreement that a biventricular repair would be do-able, so we’re not exactly sure why this thought has now shifted. Rest assured, if they can’t do it, it’s NOT the end of the world. They can do a single ventricle repair, but it’s not ideal and carries the risk of future complications. That said, Dr. Stewart said she has plenty of single ventricle patients that are doing great and don’t have any issues! Dr. Stewart is going to call me after she presents Emmy’s case and she will let me know what Dr. Fraser’s thoughts are regarding the biventricular repair. Within the next couple of months, we will meet with Dr. Fraser to discuss his plan moving forward.

Last night, I found out that there is a group of surgeons at Boston Children’s Hospital who specialize in these complex repairs. Dr. del Nido and Dr. Emani are two of the surgeons who head up the complex biventricular repair program at BCH. Who would have thought that is actually a thing?! We have decided to go ahead and seek a second opinion from these surgeons. I sent Dr. del Nido and Dr. Emani an email this afternoon explaining Emmy’s case, and I already got a response back from Dr. Emani himself saying that they would be happy to review her case! 🙌🏻

Please pray for wisdom and discernment for Dr. Fraser, Dr. Mery, and Dr. Stewart. Our prayer is that Dr. Fraser has full confidence in his ability to do a successful biventricular repair and that there will be no need to go to Boston. However, if we need to, we will in a heartbeat. Please pray for wisdom, discernment and guidance for me and John as we continue to navigate these waters of choosing the best course of action for our girl. My prayer is that God will make it crystal-clear as to which direction we need to go.


{Trust in the Lord with all your HEART and lean not on your own understanding. In all your ways acknowledge Him and He will make your paths straight.} ~ Proverbs 3:5-6

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