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Wednesday, November 28, 2012

Hearts, chapter 2

So much has happened in the past two weeks, it's hard to know where to begin! We had our big annual heart checkup for Ella and Benjamin. Ben was so thrilled to show Ella the ropes of the cardio appointment. Such a good big brother. They both had echocardiograms to see the current status of their little pumpers. Then we moved on to chat with a resident and have him listen to the kids' hearts. Then we got to see our cardiologist who we have known since Ben was born- 10 years ago. Dr. Dubrow first diagnosed Ben's heart defect all those years ago, and we've been seeing him ever since. I love Dr. Dubrow. He is a grandpa-type doctor, who is insanely smart, you can just tell, and yet never ever makes me feel like a neurotic mom. He respects and values my input and makes me feel like I am just as important as he is. Which is true, but hard to remember when you're intimidated by the hospital, the tests, the medical jargon, what the results might be...so I am truly grateful for Dr. Dubrow.

The doctor said that Ella is pretty much fine, and we shouldn't be too concerned right now about her heart palpitations. He said it's like how you don't think about your breathing until you have hiccups, then your breathing is on your mind until the hiccups go away. Ella sort of has hiccups of the heart, and if they don't come too rapidly after each other, it's not too concerning.

Then we got to Ben's echo results. The doctor said he saw something in the results that had him a little concerned because it was a change from last year's checkup. So we needed to do an ultrasound of his heart to see what had specifically changed. Ben and Ella were so good through this whole process of waiting and testing. So cooperative and calm. Ben has been doing this for 10 years, so I guess he's used to it. I had flashbacks during his tests though, of years ago having to hold a screaming baby in my arms while the doctors told me to just get him to stay still long enough to have the test done! Yeah right. You try quieting a screaming, cold, scared, hungry, diaper-on-only baby Ben. Times have definitely changed. Ben lay so cooperatively during his ultrasound while I smelled the smells that reminded me of his premature birth in that very hospital, and listened to the sounds that brought me back to Ben's younger years.

After the ultrasound, Dr. Dubrow said there had been a very small change in Ben's aorta. He said everything was ok, no emergency, and in the next few years we would just need an MRI to get a very clear picture of how his heart was doing. For some reason, all day I had felt like something had changed with Ben's heart, and we were at the crossroads between needing to intervene and watching it another year. But I listened to Dr. Dubrow tell me that all was ok right now and tried to believe him. 

We left cardiology and visited the NICU where Ben and Jonah were born so many weeks early. We ran into two nurses who helped our boys when they were living there for two months. So many memories.

On the long way home from the hospital, I quietly cried my annual-heart-checkup-tears-of-gratitude for the tiny hearts beating in the back seat. And I tried to shake the feeling that Ben's heart wasn't ok. 

When I got home there was a message from Dr. Dubrow. After looking at Ben's ultrasound more closely, he needed to talk to me right away, but it wasn't an emergency. My heart sank. With dread, I called the doctor. After looking at Ben's test results, he realized there had been a change in Ben's aorta that we need to check sooner rather than later. The doctor didn't want to wait years to have Ben have an MRI, instead he would recommend it in the near future. Dr. Dubrow has known me for 10 years. He probably knew I wasn't going to mess around with waiting a few months to check out Ben's aorta. Nope. We're doing this as soon as possible, mister. The doctor agreed this was a good idea. He explained what might happen if Ben has a cardiac emergency, that basically his aorta is elongated and can tear or rip or have an aneurism. Fun stuff. He also said he has never seen an aneurism happen in children with Ben's diagnosis, although it does happen in adults. Either way, we're getting that MRI ASAP. 

Today I'm playing phone tag with the cardiac MRI scheduler. Dr. Dubrow said it's tough to get in at the end of the year, but that he'll make sure we're seen. We also went over Ben's activity limitations. He can't do anything that requires extended effort, like the rings at gymnastics. I emailed Ben's teacher, the school nurse, and the gym teacher and explained what is going on. It's scary to have to write to your school and tell them what a cardiac emergency for Ben would look like, what they need to watch for, and what limitations he has. The school is always fantastic about handling our special kids, and they didn't disappoint me this time either. It just sort of made it all real to me, to have to write that email. I said to Alex, we deal with so many other challenges with Ben- behavior issues, ADHD issues, emotional issues, etc, so it's really weird to think that his heart is actually the most critical piece of him that needs immediate attention. 

We don't know what the results will show. We may be in a holding pattern, waiting and watching, for another year. Who knows. But I'll be happier when we have the results in hand. I can't see Ben's heart, I don't know if it changes, and I can't do anything about that. That really pisses me off. All of Ben's other issues I work really hard to try and help him change. We do all those therapies so that Ben will be able to be the best him he can be. But I can't do a therapy for his heart, I can't give him medicine to fix it, I can't even see it. Frustrating. Makes you feel pretty helpless as a parent.

Luckily, our Ben is a spitfire. I'm convinced that's how he survived his premature birth, how he has grown from weighing 2 lbs 2 oz, why he was able to get off the ventilator after only ten minutes. I'm convinced that's how he has overcome all the challenges he has faced. Physical and emotional. The kid's a natural fighter. And I know his incredibly brave, resilient little spirit will fight through this heart thing too. We'll just deal with it all one step at a time. Right now the step is to get a hold of the scheduler. One thing at a time. 

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