These were the words uttered with sadness by our beloved cardiologist.
These were the words I had prayed we would never hear.
"And soon."
Me: "Soon...like before Christmas?"
"Soon. Like next week."
Wow. Ok. So this conversation took place after he read Lenay's echocardiogram and examined her. Her heart function had decreased, her blood pressure was up (higher than her normal high), and he had a really hard time finding pulses in her feet.
This trifecta sealed the deal for Lenay's heart surgery. To remove the device which was put in with the intention never to be removed. It sits in her PDA, which is an extra vessel that some preemies need to have closed between the aorta and the pulmonary artery. The device is made of titanium mesh and designed for the heart tissue to grow through and around it. It was designed to actually become part of her heart. It had fulfilled its destiny up until this point.
If only Lenay's aorta had held up its end of the bargain!
The device was put in when she was 6 months old, and it was the right size and in the perfect placement to plug her PDA. The only problem was that part of the (top hat shaped) device stuck up into her aorta a smidgen. A minor detail, we thought. As time went on it became more apparent that this caused an increased pressure gradient in her aorta, which caused her heart to work harder, her heart to get thicker, and her blood pressure to be higher. The docs anticipated that as she grew bigger, obviously her heart and specifically her aorta would grow as well. In theory, as her aorta grows, the space around that part of the device would get bigger and tada - everything would be good! The problem is that even though she has obviously gotten a lot bigger since she was 6 months old, the pressure gradient has stayed the same.
The crazy thing about all of this is that not only have they never seen this problem in Peoria, no one has seen it. Our docs have presented her case at several conferences with experts from all over the country, as well as talked with a group of docs specifically from Texas Children's (the leader in pediatric cardiology) and all they can do is speculate what they would do with this patient. The consensus has been to watch her closely with echos and EKGs, manage her BP with meds, and play the waiting game. If her heart began to show more stress, then the time would come to cut out the device.
And that time has come.
The other ridiculously crazy thing about all of this is that she has been asymptomatic. After reading her echo and having such a difficult time finding her pulses, he really pressed me: Has she been having headaches? Leg cramps? Belly aches? Is Campbell out running her? Does she get tired after being up for a while? Does she need to sit down a lot?
No. 1000 times no.
She's amazing really.
She has always been asymptomatic. And even when she was a tiny baby with a large PDA, where most kiddos with that kind of diagnosis have lots of respiratory and digestive issues due to lesser bloodflow to those areas, she had none of that. Her sister had a whole mess of those problems (and a closed PDA) - so much that I was convinced they had them mixed up! I had them double and triple check those echos to make sure we were talking about the right baby.
And now? We just got back from a week at Disney World. My fearless Lenay rode all the rides she was tall enough for. Even a couple roller coasters. And when she wasn't riding, she was off and running.
My tough little cookie.
We met with our surgeon, and he was very honest. He has never done this kind of surgery before. Sure, he has gone in and "fished devices out of the heart and lungs that have slipped out of place" (awesome!) but never have they needed to go in and cut one out the heart has scarred in and grown around. That being said, he was very confident that he could do it. I've talked with several mamas of heart kids and everyone says the same thing about him - that he is the best of the best, but he is also the first to admit defeat. So if he didn't believe he could do it, he would be sending us somewhere else.
There was some discussion about how to approach the surgery - if it should be open heart or thoracotomy - and he decided it would be a thoracotomy. His plan was to go in and try to just cut off the part of the device sticking up into the aorta, and if that didn't work then he would cut out the whole device and stitch up her PDA.
Surgery lasted about 3 hours. When he met us afterward, he told us that the device was so encapsulated within the aortic wall, and the scar tissue extended around the aorta, that it created only a tiny hole for bloodflow, versus a wide open aorta. His only option once seeing it, was to cut out that section of her aorta and stitch it back together. This is called an aortic bisection, which he does for kiddos who need a coarctation repair.
He gave us the pictures he took of the section he removed, with the device inside it as well as the scar tissue that not only enveloped the device but also spread around the aortic wall, almost pinching off her aorta. Seeing that tiny opening which all of her blood had been pumping through was simply shocking. And then the realization that her body had adapted to that bloodflow demonstrates the survival instincts which must be built into her very cells.
The more I learn about the human body, the more reinforced my belief in our Creator becomes.
The hours and days after surgery proved to be very exciting. Lenay's color became more vibrant. And not that she ever seemed like a super pale kid to us, but we were just used to her complexion. The pulses in her feet were jumping. Pulses we could barely feel before became "you could feel them through the blanket!" according to our doc :) And as she was laying in her hospital bed, her feet were kicking and moving all the time. It seemed like she wanted to get up and run a marathon or something! And she felt so warm. All that new blood flowing is doing a body good.
We are once again reminded how very lucky we are to have the Children's Hospital of Illinois with the Congenital Heart Center in our backyard. There are families who drive hours to bring their kids here. We drive 15 minutes. We are so grateful to our cardiologist Dr. Bramlet and our surgeon Dr. Fortuna. They made the call and they got it right. To mend a broken heart.
