Heart Hero of the Month December 2021

by, Sean, Laura and Izzy

Not long into our pregnancy journey, we found out our first child would likely face an uphill – if not impossible – battle with her heart. Initially diagnosed with pulmonary stenosis, things turned south at week 23 when we discovered a new – more complicated – cardiac issue: Complete Atrioventricular Septal Defect (AVSD).

Our specialist, Dr. Jansen, had hoped to tackle the pulmonary issue immediately post-partum, buy enough time for our daughter to grow, and eventually schedule a full AV valve repair in the months ahead. But time was unfortunately never on our side – or Izzy Rey’s.

We quickly learned, like so many who go down this path, to keep your head on a swivel and focus on each day as it comes. And never take anything – or any moment — for granted.

Right around the time Laura hit 31 weeks, she had developed fetal hydrops that ultimately forced her to have an emergency C section on Feb. 22. The premature delivery threw a wrecking ball into our already shaky confidence that we’d ever take our daughter home. We knew that – even if she survived the first few days – her size would pose a barrier to surgery for the foreseeable future.

Coming out of a successful IVF cycle, the whole situation was more debilitating than we could have ever imagined. In the back of our minds, we felt the previous 3 years of hardship had been enough. This was our moment to celebrate – our moment to proudly wrap our love in our most precious creation.  Not wallow in despair and grief.

Life comes at you fast – really, really fast. One minute you’re on top of the world and the next – well, the next you’re hovering your finger over the send button of a text message – afraid you’ve reached the end of news to share with those you love.

But like I said – life is an ever-changing narrative. You don’t ever want to hold your breath for too long.

Monday, April 19, 6:45 a.m. Omaha Children’s Hospital

After a weekend that saw Izzy’s vitals drop considerably under the increased pressure of diseased lungs, we were faced with our hardest decision yet: hold out for ECMO life support or move to comfort care.

We opted for the latter.

But roughly 17 hours before we were scheduled to hold her for the last – and weirdly first time with no medical cords – we were given a thoughtful do-over.

Dr. Duncan, a surgeon with more than 30 years experience in pediatric medicine, had come by Izzy’s room the day prior to say his goodbyes – lamenting that it was an unfair situation she was up against and wished he had an answer or some way to spin a positive. Laura made sure to remind him when he left that if he “had a magic wand”, now was the time to get it out and use it.

Turns out, he didn’t possess that wand – but he knew the man who did. After reviewing Izzy’s charts later in the day, Duncan saw some clearing in her lungs that warranted more discussion and a call to Dr. James Hammel.

Sometime in the late evening, we received a call from Hammel’s office – looking to schedule a meeting the next morning to discuss heart surgery.

We looked at our daughter for the first time in days without thoughts of not having her – without crying and feeling like we didn’t do enough to help her. I put my hand on her head, not knowing if it would be the last time I would see her alive, and felt her energy calm me.

“I give it a 90 percent success rate for a total repair and having your daughter out of the hospital in the next few months,” he told us during our morning consult. “But I think we should move today if we’re going to do it.”

There was no sway in his posture or pause to think about a follow-up to his comment. He had no doubt he could do a full repair of an abnormal, open AV valve and the neighboring pulmonary valve. In a few hours, he was ready to create a new narrative to Izzy’s story.

Maybe nobody else in the cardiac spectrum believed it could happen the way he so eloquently said it. Heck, I’m not sure I fully believed it. But I believed in Dr. Hammel and his confidence.

It was the hope I – we – needed to exist beyond this.

Friday, November 5, 10:45 a.m.

Maybe it was being too familiar with our surroundings, or maybe the 250+ days of being accustomed to a reality of living in two locations, but seeing our daughter leave a medical facility for the last time was more surreal than we thought it would be.

When were we going to have to take her back? How are we going to take care of a special needs child on our own?

Is this ALL FOR REAL?

Izzy had defied death and all other odds against her. She had been given a miracle to carry on. Now we had the keys to her wellbeing – the keys to helping create a wonderful new life for our wonderful daughter.

Though she’s still on a ventilator to improve her lung capacity, she is no longer on oxygen or taking any heart medications. A baby that was regularly cathed, poked, prodded, and paralyzed to keep her alive now visits the zoo, watches Harry Potter and pets our dogs. The tears we once shed from living on borrowed time have transitioned into tears from seeing her smile – her finding excitement – at all things a normal baby should find excitement with.

Though it’s been and will continue to be a long journey, it seems fitting that our little heart hero would come home for the holidays — a time of year we give thanks the most. It also seems fitting she’d continue to do things her own way.

The only way she knows how – keeping us on our toes.

We are so thankful for all of you in the Heart Hero community – who have helped us so much along the way. Your gifts, online community and words of encouragement have been life-sustaining.