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New Depths of Exhaustion… And Immeasurable Joy for Ava and Her Heart Mama

Today, our daughter Ava is a healthy, spunky, medication free, wild and talkative three and a half year old. But where we are today wasn’t certain when I was pregnant with Ava. I was told at my 20-week scan that they wanted me back in 5 weeks because there were some things they couldn’t see. I thought nothing of it. At that 25-week follow up, we learned something was not right and were immediately sent to Atlanta Perinatal Consultants. After two not quite right diagnoses, we were sent to Sibley. My husband Chandler and I felt desperate for knowledge, for answers, for hope.

It was at Sibley that we finally were given some answers – Ava was diagnosed with Shone’ Syndrome – and a surgical plan. We got to tour the CICU at Children’s Healthcare of Atlanta at Egleston, which gave us a little glimpse into our future. When I delivered Ava, Sibley doctors came straight to Ava’s NICU. They performed some tests and talked to us. Sibley was always on top of things, which gave me a sense of security.

At 6 days old, Ava underwent open heart surgery to repair her coarctation and close one of her VSDs. Over our nearly 4 month stay at Egleston, Ava went on to have multiple scopes and cath procedures. Later on, she underwent surgery for a g-tube and, most life-changing for us, a tracheostomy.

To all the new trach mamas: I know it feels like you traded your squishy baby in for an awkward robot/transformer version. But I promise, your wee one will surprise you, and you will surprise yourself. You will find wells in yourself, full of patience, energy, love and understanding; wells you didn’t know existed.  Never stop fighting for your child and what you know they are capable of.  From one medical mama to another, you are AMAZING, you are capable, and I know, without a doubt, you are tired.

The first year of Ava’s life was the most challenging year for our small family: full of fear, love, snot, nervous laughs, tears (mostly mine), painful silence, lots of learning, mistakes, triumphs, firsts, unending phone conversations, beeping, new depths of exhaustion, and immeasurable joy.  The roller coaster is real.

Our family was a huge support to us. So was the community around us — their kindness was unforgettable. Connecting with other mothers was a wonderful source of support. There were always people cheering us on and offering stories of hope when our own seemed dim. Now that we’ve come full circle and get to be that source of strength for others … it really is just a beautiful thing. Many of our heart families feel this way, and we always say every heart baby belongs to every heart mama. You can’t help but feel connected to each other.

We were also helped immensely by so many people, sonographers, CICU doctors, the surgeons and cardiologist. Ava had many respiratory issues, so our respiratory therapists were with us constantly. They probably felt more like my and Chandler’s therapists than anything!

So many nurses helped us along the way. I’d feel terrible to start trying to name them all for the fear of leaving even one incredible person out. We had the best of the best, including a nurse named Donna, who taught us everything we needed to know about the intimidating trach life.

Ava recently had her trach removed and her stoma closed. About which we can only say, yay! In summer 2016, Ava welcomed a baby brother, Fitz. She’s a fantastic big sister – she loves teaching her little brother new words. Since Fitz came along after Ava, I think it just made me so much more grateful for him and his health. He was really my first “newborn” experience at home and I cherished it just that much extra.

Ava loves her cousins, going to dance class, Peppa Pig, all things pink and asking questions. She’s also quite theatrical and loves to make videos on my phone. We are eternally grateful for this kid!

Now that we’ve come full circle and get to be that source of strength for others … it really is just a beautiful thing.

Ava with Dr. Watson
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