There isn't much I remember about Zane as a baby. It's all a blurry fog of stress and sadness. When I think about those first few months here is how I would describe it. I felt like there was a physical weight on my shoulders, a heavy fog around me that I couldn't quite push aside, a constant ache in my chest, a pit in my stomach, and a constant ticking clock in my head. The clock ticked very loudly those first few months, becoming almost deafening as we turned the corner into October, facing his upcoming surgery date. It got louder and it sped up until one day, a few weeks or months after surgery, without me even realizing it, the ticking disappeared, the fog lifted, and I began to be able to just be a mom again. I could take off my nursing hat and just loved my sweet boy who was all better. It took almost a year until actual days would go by without thinking about my son's broken heart, but I got there and for the past five or six years that's where I've stayed. I've been in a blissful state of denial, brushing aside any thoughts of the reality that lay ahead of us, sure we had many years before we would have to worry about that, and only hearing the faintest sound of the ticking clock once a year when we would be brought back to reality, ever so briefly, at Zane's yearly cardiologist appointment.
This past week I could start to feel it, that tightness in my chest, the ache in my stomach, the dread I couldn't quite put my finger on. It was that time of year again, cardiology appointment time. This year Zane's yearly appointment happened to fall on National Wear Red Day. February is National Heart Disease Awareness month and on February second everyone wears red for all forms of heart disease not just Congenital Heart Disease. Zane's appointment was at 10:30 in the morning so we had time in the morning to play with Grandma before we had to leave. We all dawned our red for our favorite heart warrior and took pictures before we left.
I've known since day one there would be a day when the doctor came in to our appointment and said something other than, "well his pulmonary artery valve doesn't work, but everything seems fine so we'll just watch it." That's the line we've heard for six years now. In all honesty I felt pretty confident that would be what we heard this year. He had his MRI in August and we hadn't heard anything so you would think that means everything is fine. The nurse in me knows he probably didn't even read that MRI until this week so there was a part of me that knew the results could be less than ideal. So in we went to do all the normal things. First up pulse ox check, where this lovely lady said "What does he usually sat at his baseline?" Ummmm 100%, perfect, because he's fine! That was our first clue it wasn't going to be a great day, not because his oxygen saturation was low, he was sating 97%, which is perfect, but just a bad feeling sunk in at that point.
Then into the room for his EKG, but they didn't send us over for an echo? Strange, so we waited.
Zane, always cool as a cucumber, looking every minute of seven, but the size of a ten or eleven year old. He was playing with a Rubik's cube, then the doctor came in and asked the same questions he asks every year. The same questions that I never put any thought into answering. "Is Zane able to keep up with the other kids he's playing with? How is his energy level? Does he get tired easily" Zane's a crazy person and has tons of energy, great, everything is fine. False!
After this picture, he laid there quietly for awhile, then he reached his hand over and took my hand. I almost cried then, before we'd gotten any news, he was maybe just a little nervous after all.
After that the conversation we had been dreading for years took place. The one were the doctor tells us that the MRI showed that his right ventricle is substantially enlarged and it's becoming concerning. The one where he reminds us that we can't wait until he is actually having symptoms of his heart problem or he could have long term heart damage that he can't recover from. The conversation where he describes the different types of heart valves (cadaver, pig, or mechanical), how the function, and which one a surgeon would likely use in his surgery. Yes, officially confirming he will indeed have another open heart surgery, a fact that we weren't one hundred percent confident about after his first surgery. There had been hope that he could have all his future repairs done in the cath lab. It was the conversation where we were told he'd need his valve replaced in the next year or two, or sooner if he were to develop symptoms. This was the conversation I thought we'd be having with fifteen year old Zane, not seven year old Zane. He explained in great detail how each valve only last ten or fifteen years, which means Zane is looking at upwards of half a dozen valve replacement in his life, something I had literally never ever thought about in this whole journey, the life long aspect of it all. He mentioned, several times, not wanting to cross the bridge past the point where he has heart damage that can't be reversed.
As the doctor was talking I was painfully aware that for this conversation, unlike the first one, Zane was very much present and very much paying attention to every word coming out of the doctors mouth. The doctor of course was in no way talking to Zane or explaining any of this him. Halfway through the talk Zane came down from the exam table and sat on my lap, still playing with the Rubik's cube. I flashed back to holding him as a tiny baby, in that brown outfit with the little cars on it, at his first cardiology appointment. Staring at his little face while the doctor told us stories about Shaun White and showed us hearts diagrams, his tiny face was the only thing keeping me from falling apart. This time hugging his big body held me together.
We left with a plan to repeat his MRI (which cost a small fortune by the way) as soon as we could, which getting into a pediatric cardiac MRI takes at least six months so probably this summer. If his right ventricle is much larger then he'll need the surgery soon there after. If it's relatively the same we could potentially wait a while longer. I left with the since that if we could make it to nine years old we'd be very lucky. Nine years old, we were told he'd need a valve when he was a teenager. I had been picturing a teenage boy recovering from open heart surgery not a nine year old. I was sure we'd have more time, but he's huge, thanks to my Blakley genes, so now everything is moved up, and the clock begins to tick again.
I made it outside of the building before I started crying. Zane's reaction to me crying was priceless. He said, "Mom it's ok you get to cuddle babies at your job." When I questions what in the world he was talking about he said he thought I was crying because I couldn't have anymore babies and he was getting bigger. This is a great guess, since that's usually what I'm crying about, but no son I'm terrified. Zane and I went to our customary Panera Bread lunch afterwards. We sat down and I tried to feel out what he was thinking about, was he scared, confused, oblivious, I wanted to see what he took away from the conversation. When I said, "Zane what are you thinking about ?" His response was, "Oh I'm just thinking about snakes and penguins," going to his happy place of course. When I pressed him a little further he said he thought it was grouse that dead people could be in his body (cadaver valve which they most likely won't use) and cool that he could have part of pig in him (pig valve which mostly likely will be used). Quite a bit later in the day he asked, "is there an actual bridge I have to walk over before I have surgery?" So he was paying attention just none of it made much sense.
After lunch he had to go back to school. His teacher happened to be by the office when we walked in and met us with a big, happy, "every look good?" To which Zane didn't say anything and just looked at her. She looked up at me and I could see her heart sink. She sent Zane back to class and came in the office where I gave her the unexpected update. She was the first person I had to relay this information to. It felt surreal and I could feel the shift back to having a sick kid. It being tangible and scary and very much happening now. The whole day was a stark reminder that kids with CHD are never fixed. This is a life long battle.
The stresses for me this time around are amplified by the fact that I have no idea where he will have the surgery. I really don't want to have it here, but that comes with it's own set of stresses surrounding my job. Everyone at my job will know my son's having heart surgery. It will be very awkward to explain to my coworkers/boss that I want to take my son somewhere else, not because concerns surrounding the surgeon, but because of concerns surrounding the care he'll get post op, the care level I'm directly involved in. I have no idea how to go about getting my child seen by a surgeon out of state, how to facilitate that, or how we could possibly afford that so it's a whole new level of stress added to most stressful situation imaginable. I never thought I would be wishing that I could just stress out about the actual heart surgery itself not all the logistics surrounding getting it to actually happen.
Rowan gave me lots of hugs and cuddles and said multiple times, "this is just a difficult day Mamma." Yes, dear heart that's an understatement.
I spent the rest of my day trying to figure out what that familiar terrible feeling was. It took me a while to figure it out. It was that weight, that fog, that heaviness returning. The constant dread, the constant fear of losing your child. The sadness of having to put back on my nursing hat to assess my child. The return of the constant ticking of the clock counting down until your world will be torn apart again. Counting down until your child's heart will be stopped and he will be put through terrible pain, but this time he will remember it. I can feel his story changing, I can see his life road turning, and I desperately want to stop it, but I know that I cannot. The heart warrior journey is never finished. His life's road is going to be harder than I ever let myself imagine when I was holding that tiny baby. This realization has cut me to my core. Now it's back to thinking about my son's diagnosis everyday. Trying to figure it all out, trying to warrior on.
