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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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Posted 2019-11-08T21:32:00Z

Boston.

One year ago today, we sat in Dr. Stewart’s office and received the news that Emmy had more than just “a little hole” in her heart. If I’m being totally honest, it feels more like 10 years ago, but not in a bad way. This past year we have been prayed for, lifted up, loved on, and supported in more ways than we ever thought possible. Our family and friends have showed up EVERY. SINGLE. step of the way. And our church...I can’t even begin. The way that our church has rallied around and relentlessly prayed for us has truly been a blessing to behold. We are humbled, and oh so grateful, for Lake Hills Church. Through the ups and downs of the last year, our Pastors have come along side our family and reminded us of God’s goodness in every season of life.

Since the day we received Emmy’s diagnoses, we have repeatedly been told by the doctors that they weren’t sure if a biventricular repair (the preferred repair method) would be possible with Emmy’s complex heart anatomy. A couple of months ago, we began the process of seeking a second surgical opinion from Boston Children’s Hospital (BCH). Four days ago I had the chance to speak with Dr. Emani, the heart surgeon at BCH. He said the words that I’ve been waiting to hear for the last 365 days...”I believe it can be done.” He said yes to a biventricular repair! After months and months of discussion and prayer, John and I made the extremely tough decision to go to Boston for Emmy’s surgeries. Traveling across the country will definitely add a level of a complexity to an already complex situation, but we are confident in our decision and the team that will be caring for Emmy at BCH.

Dr. Emani’s current plan is to do a heart catheterization as well as a repeat MRI and echocardiogram under anesthesia sometime in January. There is a membrane that is covering the mitral valve in Emmy’s left ventricle, and he believes that removing it will help the ventricle grow proportionally to the right ventricle. Right now, her left ventricle is just a little bit smaller than the right. The plan is to attempt to remove the membrane via catheterization. If this can’t be done, Dr. Emani will need to surgically remove the membrane. We will have a surgery date scheduled for sometime within a week of the catheterization. If they’re able to remove the membrane during the catheterization, there will be no need for surgery at that time. Because of the location of the membrane, Dr. Emani is not sure if they will be able to remove it via catheterization. At a later date, Dr. Emani will preform the actual biventricular repair. Prayerfully, we will be able to wait another 2-3 years before that surgery is needed. In the event that she needs surgery after the heart catheterization, we will most likely be in Boston for at least 4 weeks total, assuming she does great and doesn’t have any complications or setbacks. Here’s the breakdown: one week before the surgery date for the heart catheterization and other testing, one week spent in the hospital following surgery (one week minimum, with no complications), and about 2 weeks after discharge from the hospital for follow up appointments before coming home.

One year ago we didn’t know what today would hold. We didn’t know if Emmy would have other serious problems in addition to her heart defects. We didn’t know if we would be living out of a hospital room for months on end, or if we would be living a normal life in the comfort of our own home. We didn’t know if she would need assistance breathing, eating, and gaining weight. We didn’t know if she would hit milestones at a normal rate. Every time we had a conversation with the doctors before she was born, it went a little something like this: “XYZ is our best guess...but we don’t know. She may need surgery immediately after birth...but we don’t know. She may need to be in the hospital on an IV medication for months until her first surgery is needed...but we don’t know. She may be totally fine and be discharged within a week of birth...but we don’t know.” We didn’t know, but God did.

Today we are at home living a normal life, with a normal baby who has surpassed any and all expectations. You would never know just from looking at her and interacting with her that there is anything wrong. Please continue to pray for wisdom and discernment for Emmy’s medical team - Dr. Temple, Dr. Stewart, Dr. Beroukhim (cardiologist at BCH), and Dr. Emani. We are excited to see how God continues to use Emmy’s story for His glory!

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{Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us} Ephesians 3:20

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