MY HEART BABY...IS STILL A HEART BABY
Heart baby. Also known as: a child with a congenital heart disease or heart defect. You'll see all kinds of heart babies out there; some of them are barely holding on, some of them have had several surgeries and are thriving, and some of them got extremely fortunate in being able thrive after only one major surgery, and seemingly like nothing ever happened to their heart.
The latter is what we have prayed and hoped for. The latter is what we were told would likely happen, because of how amazing she seemed to be doing after her first heart surgery at two weeks old. (Emaline was born with a rare CHD, called Shone's Complex, fyi). We basically thought, hoped and prayed that her first surgery was more than quick fix, and that she'd never need anything else. (READ HER BIRTH STORY HERE)
Last year, they moved us to yearly cardiologist appointments because she was doing so well. But at the last checkup, they noticed her bicuspid aortic valve had worsened, slightly. They said we would still wait another year to be seen, and watch it. They told us she was doing amazing and there was nothing to be concerned about, so we didn't fill our brains with thoughts that something could actually be wrong.
Last Wednesday, we went in for Emaline's yearly appointment. It was the first time she was really aware of what was happening - which was very emotional for us both, explaining to her what they were doing, etc. But she was very calm and VERY interested in what was going on. At these appointments, they start with an EKG and then we move rooms to have the Echocardiogram done (ultrasound of the heart). This is where they essentially take pictures of the valves and all components of her heart to measure everything.
Afterwards, we usually wait a while for the cardiologist to read the echo, and then he comes and talks to us about everything he is seeing.
Unfortunately, this year we didn't get the magical news we had been hoping and praying for. Her aortic valve stenosis has yet, worsened again. This time she's even closer to needing an intervention.
The intervention would be a balloon cath to stretch the valves so that they can function properly. And then, eventually she will need a valve replacement (this we are hoping to put off at least until her teenage years).
This is actually something we should have expected with her Shone's Complex - but I just truly thought we would be able to move on from all of this at some point soon.
The good news is that the mitral valve stenosis has remained the same since her first surgery, and they aren't seeing anything affecting the right side of the heart (it's pumping beautifully, he said). This would likely be the hardest surgery to do on her, and we really want to avoid it at all costs until she is way way way older (like adult age) if possible. So, thank God it's looking good and we don't need to worry about that right now.
All things considered, the news we got isn't the worst news.
But if I can be real REAL with you all right now, my mama heart is broken. After her 3.5 hour appointment, all she wanted was a red lollipop. We got in the car, and she fell asleep instantly with said lollipop stuck to her arm. And then... the tears came, and haven't stopped since.
For the last 2.5 years, I held on to these positive things the docs would say - because it's all that I had. They said they never thought she would have to have any sort of interventions because her heart was looking THAT GOOD. "She might even make it to age 50 before another surgery! She's a miracle baby!"
So once we heard that, we clung on to it like it was permission to continue on with life as if we have a child that isn't sick.
I guess, in a way, it was also my way of dealing with everything. "She just had a rough start," people would say, and I'd agree with them. "But she's perfectly fine now."
Except for... that isn't true. She's not perfectly fine. And this will ALWAYS be an issue for her. This will ALWAYS be a part of our lives.
See... for awhile now, I've let myself believe that she was fine and that we didn't have anything to worry about. That we wouldn't be those families you see going back for more surgeries. I didn't think that would be our situation. If you have ever met Emaline or seen videos of her, you know that she doesn't act like ANYTHING is wrong with her. This only made it more surprising to hear this new news. I've tried for so long to push the possibilities of her going back into the hospital out of my head. This is me, just trying to process the harsh reality that that likely just isn't going to be the case with her.
I know that miracles happen. And I do believe in them.
But I also know that in order to be the best mother I can be to her, I have to prepare for this. I have to prepare for the fact that she WILL have to have both valves replaced in her lifetime. And this will likely involve open heart surgery (although, word on the street is they are developing a way to do this through a catheter which would be amazing).
I also have to prepare myself for the fact that in the next year or two, I will have to hand my baby girl back over to the docs for a procedure that will save her life. I've done it before, I can do it again - but I can't tell you that it doesn't break my heart.
I'm thankful for her health, all things considered. She is okay right now and she is always going to be okay. But regardless of what type of medical issues your child may have, no one prepares you for this.
So... what now? We are back on 6 month appointments. We watch and wait. Once the pressures in that valve hit the number they don't like to see, we will begin the (somewhat non-invasive, cath) intervention process.
As for me and my emotional, preggo, mama bear self... I'll be over here focusing on the good news, praying about the bad news, and snuggling with my girl as much as I want.