Discovering Mavericks Congenital Heart Defect

 

On Wednesday November 29th we took Mav in for a weight check. Just as we had done twelve times before. Biggest difference being- this time, I was ready. I came with notes, questions, suggestions, a feeding journal and a tough attitude. Ready.

After seeing his weight pop up on the scale, I notice that familiar look from the nurse. She shot out that half smile the nurses so generously give. Then those other words I was accustomed to hearing- “The Doctor will be calling you later to discuss his weight results”. This time, I wasn’t having it. I didn’t want another phone call. I didn’t want any more suggestions. I wanted solutions. I insisted Maverick and I wait until the Doctor could see us.

When the Pediatrician came in the room she amused me and looked at everything I brought to the table. I know she could sense the defeat in my voice. As I could sense the wheels in her head turning. We both wanted answers. The measly four ounces he gained in nearly three weeks clearly wasn’t cutting it.

She hit me with that understanding sigh, something else I became accustomed to, as she asked me question after question.

Then, I saw it. Something I hadn’t seen before. A little light in her eye. She heard some strange breathing.  Stridor noises is what they call it. I know now- those stridor noises weren’t the problem. But if it weren’t for those noises she might not have pulled out the stethoscope for another listen- which lead her to finding his heart murmur.

I didn’t know what to think. I knew nothing about hearts. What even is a murmur?

Before I knew it Mav was having his blood pressure checked on both arms and legs, pulses and oxygen all taken. Then we had an EKG done “just to be safe:”. A few hours after this whole weight check appointment started- the pediatrician returned and told me their pediatric cardiologist would be calling me. She explained Mav’s EKG was abnormal and his femoral pulses were almost nonexistent- all of which pointed to there being a problem.

I mustered out the golden question: “could this be causing the poor weight gain?”

It was a strange mixture of fear and relief when she said it would explain everything.

We were sent home to wait for that call from the cardiologist. We were advised on what to watch for and told if anything about Mavericks appearance changed- to just return or go to the ER.

I spent the three hours waiting for that phone call starring at Maverick and scrolling through google.

When the cardiologist finally called she asked us to make the hour trip to her the next day. Maverick needed further testing done asap but she warned me- she was pretty confident there was a problem. A “significant problem”.

Thursday November 30th, my Mom accompanied me to the Pediatric Specialties office where Maverick had X-rays, blood work and an echocardiogram done.

The Doctor came in towards the end of the echo and gave us the news. The problem she suspected was there- was present. And definitely significant.

I walked out of that dark sonogram room, with tears in my eyes, clinging onto my baby.

We followed the Dr into the other room where she spewed out a ton of information. Words like “surgery”, “defect”, “heart failure”, “failure to thrive” being used to describe Maverick were ringing through the room. My grip on Maverick slowly got tighter. I could feel the words bouncing through my head as I tried to grasp what was going on.

Mav was diagnosed with an aorta coarctation, mitral valve stenosis and bicommisural aortic valve. The coarctation would need to be repaired immediately with hopes the other two problems would resolve themselves with time.

We walked out of the Doctors office that day with a piece of paper with Mavs diagnosis scribbled next to a diagram of a heart, and a whole lot of confusion.

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The next four days were tough. A lot of tears were shed. Along with a lot of planning, questions and research. I learned more about the human heart in those four days than I ever thought I would need to know. Suddenly I had a pretty vast understanding on how a normal heart looks and function and how that differed from Mavericks heart.

We are fortunate to have an awesome cardiologist who shared our fear that his condition could worsen before our scheduled surgery in two weeks. So, on Monday December 4th– after a short visit, she made some calls, gave me a big hug, told us to go have dinner, pack and sent us on our way to UCSF Children’s Hospital that night.

I felt that relief and fear all over again.

Three weeks later and the dust is yet to settle. I hope to talk more about Mavericks surgery and the recovery process, once it is all over. For now- if there is anything I’ve learned through all of this is that we, as parents, are our babies’ biggest advocates. As tough as this all has been we are so thankful we finally got our answers and Maverick has gotten and will continue to get the care he not only needs but deserves.

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2 thoughts on “Discovering Mavericks Congenital Heart Defect

  1. That’s pretty high up there on worst things to hear as a parent. I’m so sorry you guys had to go through this. It sounds like you have a wonderful team working with you and it’s so true about being your child’s number one advocate. Mav is lucky to have you! (And vice versa.) Can’t wait to hear news of you all being home and healthy.

    Like

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