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Heart Month - Day 2 (Diagnosis)

Day 2 of heart month we are sharing about Nolan's diagnosis. And while it is heart month his diagnosis didn't start with his heart, it started with his Microtia.

When Nolan was born and we first saw his "little wrestler ear" (see yesterday's post for the reference) we were shocked. I had never seen an underdeveloped ear before. He also had a skin tag hanging from his right cheek (We would later learn that that skin tag was part of his ear that stopped developing).

When a child is born with Microtia there is a recommended checklist of organs to look at. Ear, Eyes, Kidneys and, you guessed it, the heart. We didn't see a cardiologist until Nolan was 3 weeks old, and honestly, we were not expecting them to find anything. We felt the appointment would be precautionary.

They did an EKG and Echocardiogram first and then his cardiologist came in the room. it is one of those moments I can remember everything. Exactly what I was wearing, exactly what was in the room, and exactly the way the air felt. He told us Nolan had two holes in his heart. They would need to be repaired with open-heart surgery and surgery would take place around 6 months old.

Our worlds changed. All at the same time we got a ton of clarity and had a ton more questions. It explained why he was so tired, his body was working to stay alive, and didn't have the energy for much else. It explained why he hardly ate, this is something VERY common for heart babies. It explained his breathing patterns, and so much more. BUT it left us with so many unanswered questions we hardly knew how to move forward.

We were able to see a geneticist at Emory the following week and after MANY tests we found out that Nolan checked enough boxes to be classified as Goldenhar Syndrome. This is a non-genetic syndrome that can impact the ears, heart, muscle tone, and spine (it can impact much more but right now these are the boxes that Nolan checks).

Post heart surgery, Nolan was diagnosed with low heart function. Prior to his surgery, these things were not missed, but rather, not found yet. His heart function (the actual squeeze of his heart) should have improved post-surgery but got worse, like scary worse. A month after his heart surgery he started 5 daily medications for heart failure and while his heart function has significantly improved, he is still medicated. A normal ejection fraction (heart squeeze) is 55+. Post-surgery Nolan's EF was 33, and on his most recent echos, he is averaging around 50 with medication (we are beyond thankful and pray every day for his function to be stable or improve).

His final diagnosis of scoliosis came about 6 months after heart surgery. I had noticed that since his surgery his rib cage protruded and you could clearly see a curve in his spine. At first, his doctors assured us it was nothing and that he was likely "put back together a little crooked" (yes.. that was a real sentence said to us). But after watching it progress I kept pushing and we finally ended up at one of the top Orthopedic Surgeons offices in the country (he is a CHOA doctor and is AMAZING).

In January 2020 Nolan's spine curve was over 32 degrees and in Nov it was around 22 degrees. This is a HUGE improvement but we still have a LONG way to go. Right now Nolan wears his brace for 16 hours a day and will likely need it until he "stops growing" (likely around age 17-18). That feels so far away but we try to focus on the now. One year down.

I want to be honest, each doctor's appointment is hard. It is filled with anxiety leading up to it and PTSD after. It is hard to hear a list of things that is "wrong" and many times we find ourselves preparing for bad news. Preparing for ONE. MORE. THING.

We are thankful that we have all the answers and that right now Nolan is thriving. It took me a long time, in the beginning, to realize that HE is NOT his diagnosis, these are things that he has. He is the strongest warrior I know and constantly proving them all wrong.

Lesson to learn - if you see someone different, don't point, don't stare, ask. Use it as an opportunity to learn, to educate yourself or your kids. I promise you, I would much rather someone ask kindly about Nolan's ear or brace than point and say, "what's up with that?" (and yes, that has happened). When you know better, you can do better. And we can call do a little better to learn about someone else. You never know what battle they are fighting, or have fought. #battleon

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