On Monday we took our son to see the pediatric cardiologist for his six month follow up echo.

We were given the option this time to see our doctor at the Easter Seals building in Bloomington, rather than drive farther to Peoria.

They were running behind (of course), but I liked that it was a small, quiet building.

I came prepared with a pocket full of lollipops and the portable DVD player as I didn’t know how well my active two-year-old would sit still for the echo.

All that preparation was for naught. They had a large television mounted in the exam room. A Hercules DVD was playing and I asked if we could throw in our beloved Thomas. It only took him a minute to settle in and he laid there watching his show. The woman was able to do the entire echo without problems or distraction.

The cardiologist reviewed the echo and the notes from last time. He said that there is no change in the degree of stenosis of the valve. In fact he said the echo was almost identical to the previous. This is great news. It’s the best we could have hoped for.

At this point there are still no restrictions on his activity and because it doesn’t appear to be worsening, we can come back in one year.

So once again I can put his beating little heart out of my mind. His heart condition will fade back into the background of our lives.

And he can go on being a carefree, active, daring little boy.

One Thomas DVD.
No lollipops.
One relieved mom.

Light Hearted is a post from: D-Mom Blog

My little guy recently turned two.

He’s a hearty, funny, mama’s boy.

His facial expressions are so dramatic that he is going to give his sister a run for her money. He’s a boy’s boy (like how they say “man’s man”). He’s rough and tumble.

He loves digging in the dirt, and trains, and kicking a ball around. He wants to be outside all the time and one of his favorite things is sneaking strawberries from the garden. If he can’t break one from the stem, he will bend down and bite it right off the vine.

His vocabulary grows by leaps and bounds each day, surprising us with new words we didn’t know he knew.

If I am sitting down, he comes behind me wrapping his arms around my neck and says, “Set. Go!” insisting on a piggy back ride.

He surprises me now and then with brief moments of tenderness. He strokes my hair, gives me kisses, hugs me tight. And then he’s off again in a flash.

He’s everything a two-year-old boy should be.

When the cardiologist told us not to think about his heart condition and to treat him no differently, I have to say I managed to put it out of my mind. His sister’s chronic medical condition is every second of every day and requires scheduling, thinking, and action.

His heart condition requires nothing of us. At least not now. After an appointment it falls into the background. Not an immediate concern.

But we go back today for our six-month return visit. The approaching appointment brings it back to mind.

Foremost on my mind is how we will get an on-the-go two-year-old to sit through an EKG. Have you had one before? You have to be calm and you have to be still. For what in toddler time is about three days.

We had a trick during his last echo: lollipops. He had never had one before and it was so novel that he laid still, licking away. His heart calmed and so did his demeanor.

Will it work again? I hope so. I will pack our bag with lots of sticky lollipops (and wipes to clean him up). And I think I am going to take our portable DVD player with a handful of Thomas episodes.

But he won’t even sit still for a diaper change, so I don’t know how this will go over.

Not on My Mind, But in My Heart is a post from: D-Mom Blog

My son is like any normal almost two-year-old boy. He’s rowdy and loud and active. He loves trains and anything with wheels. He’s good at throwing a ball and he’s a quick runner.

A few months ago he was diagnosed with a heart condition, this coming right on the heels of our daughter’s diabetes diagnosis.

What our pediatrician first thought was “not good, but not bad” turned out to be more serious than we imagined.

We took our little guy to the pediatric cardiologist in Peoria. The same cardiologist who had read the echocardiograms performed in our home town previously. One quick listen and he said he heard stenosis. He told us that he was going to have his staff perform another echocardiogram because they knew exactly what to get images of and what to measure.

Stenosis was not a word we wanted to hear. When our doctor originally called me on the phone and said that the bad news was that our son had a bicuspid aortic valve, she said the good news was that there was no evidence of stenosis or regurgitation. People can live a very normal, healthy life with a bicuspid aortic valve when there is no stenosis, maybe never having a single problem.

The cardiologist wanted to measure the degree of narrowing. If it was minor, then there would be no problems.

My heart sank when he told us less than an hour later that there was moderate stenosis. And there was no way to tell at that time if it was worsening or if it had always been at this level. We would have to return every six months for another echocardiogram until he is grown.

The doctor started explaining stenosis and what happens if it becomes severe. They can go in with a balloon catheter and enlarge it. But this might cause leakage. And if there is leakage, then his valve may need to be replaced.

A valve replacement? Open-heart surgery? On my healthy little boy?

We were told there is nothing to worry about now. Don’t even think about it. Do not treat him any different. Don’t restrict his activities. Nothing has changed. We’ll monitor him and deal with problems if or when they arise.

So after that day, I did just that. I put it out of my mind.

I have enough to think about with the daily care of my daughter. Care that is literally life or death for her.

There are long stretches where I have completely forgotten about this congenital heart defect.

He is healthy. He is active. He is all boy.

And then I am reminded and my heart sinks. It’s more than a parent can take. To have two children, both children, with potentially devastating health conditions.

In my heart of hearts, he will have a normal life. He’ll be a tornado on the playground. He’ll overtake his sister in height. He’ll play football. He’ll wait for his beautiful bride at the alter. He’ll have children of his own.

And then I am snapped suddenly back to reality, just reading the day’s news.

This morning I read of an NFL hopeful who was told that the dream he’s carried in his heart is no more.

And I am reminded.

And my heart is heavy.

The NFL is Not for the Faint of Heart is a post from: D-Mom Blog

I haven’t even finished telling one story and now I have a new one to begin. When I asked how much more one mother could take, I really wanted to know.

I have so easily tossed around: “A parent always gets the child they are meant to have, are never given more than they can handle, and always seem to rise to the occasion.”

It’s easy to proselytize when it is not you. And it was so cavalier for me to say when I had no issues to deal with.

Yes, my daughter’s diabetes is under control and she is healthy and problem free, right now. But we’ve been presented with another obstacle in our family.

The baby, who I guess isn’t really a baby anymore because he is now 16 months old, was just diagnosed with a condition. No, not Type 1 diabetes.

When he was about two months old, our pediatrician said she heard a heart murmur. We did an echocardiogram at three months and the results were negative. They said it was probably an innocent murmur and no holes, etc. were found.

But at every single one of his well baby visits, our doctor told me she heard the murmur clear as day and she reread the notes from the initial echo.

At his one year appointment she said that if she still heard it at two then he would have another echo.

But at his 15 month appointment she went ahead and scheduled it.

So this past week we took our little boy in for a test thinking (hoping) that it would be negative just like the last time.

Do you know how difficult it is for such a little guy to lay still with a stranger putting gel on his chest and depressing a strange wand on his chest? Needless to say he screamed and cried and gasped for air.

The technician looked a little frazzled. We told him just to do it. He might cry and scream, but do what you have to do. The tech took a break and returned a few minutes later.

We sat on the table together because I had been laying next to him to hold him down. The tech sat in his chair and pulled out a lollipop, unwrapped it, and started to lick. The baby looked at him intensely wondering what this guy was doing and what did he have in his hand that seemed so interesting.

The tech took another from his pocket, unwrapped it, and handed it to the small outreached hand.

At first he looked at it, examining it from every angle. Then he took one tiny lick. Then another. Then the whole thing went into his mouth.

I leaned him back into the supine position again and the tech got back to work. He said that he was as calm as he could possibly be now.

He managed to get all the images that he needed. My husband started asking questions, but I know they are not supposed to do any interpreting.

He did say that he saw a few things. They would be read in Peoria and we would probably hear results the next day.

I called the pediatrician’s office first thing in the morning, leaving a message with my cell number.

I left for work stopping at the post office on my way. The line was long. I finally heaved my pile of packages on the counter and began discussing insurance, rates, and labels. My cell rang but I didn’t answer.

When my transaction was complete I returned to my car and listened to the voice mail.

The message was not from the nurse. It was our doctor. It is never good when the doctor herself calls back. This same doctor was on the other end of the phone when I received the news that my daughter was diabetic just a few short months ago.

I almost threw up.

I dialed back the number and could not get through to her as she had already begun seeing patients.

I wanted to call my husband but I didn’t want to worry him. Not until I actually had something to report.

I waited.

I got to work.

I waited.

I went to the preschool to take my turn cleaning.

My stomach turned as I held the mop in my hand in the same exact location I was standing when the doctor called about my daughter.

Please don’t ring now. I can’t take bad news while standing in the middle of the preschool again.

I finished cleaning and sent my daughter home with her grandmother.

I drove to Lincoln Square to grab a quick bite from Art Mart before returning to work. As I entered the building my phone rang. I sat on the bench in front of the toy store and listened to the news.

“Not good, but not horrible.”

I said, “You know, I am not supposed to have two children with problems. No parent should have two problems to deal with.”

“I know. When I got the results this morning and read them, I said ‘Shit.’”

I dug in my purse and found a slip of paper. I borrowed a pen from the toy store and returned to the bench to start jotting down medical terms.

He has a congenital heart defect. He has a bicuspid aortic valve. A normal heart has three leaflets and his has two. He has no stenosis, no regurgitation. That’s good, she told me. The blood is flowing and there is no leaking. For now.

She tells me of another young patient who just had a valve replaced. He had leaking. He’s perfectly fine now.

Oh god, could my child need open-heart surgery at some point?

I tell her that my son is perfectly healthy. You’ve seen him, I say. He’s active and running around and gaining weight and a big boy. He’s thriving.

She says she knows.

But he’s not perfectly healthy, I think. He has a heart condition. My child who was perfectly healthy a day before, minutes before, has a fucking heart condition.

She reassures me that he could live a perfectly normal life and never have any problems. Or maybe he’ll need the valve replaced at some point.

My dear child might need open-heart surgery in his lifetime. This is not how I pictured his life. This is not what I wished for him.

I must have talked to her for a good twenty minutes.

I am thankful yet again that we have a pediatrician who is laid back when appropriate, but takes things seriously when needed. She helped catch our daughter’s diabetes before there were major complications and she caught this heart defect even though the initial echocardiogram was negative.

So what does this all mean? We will be seeing a pediatric cardiologist in Peoria every six months.

I know he will have a great life. He should be able to play sports, should he desire. He should be able to do anything he wants. And as long as the valve is not leaking and blood is flowing properly, he shouldn’t have any restrictions.

And should he need a valve replaced in his twenties or thirties, just think of the medical advances that may take place between now and then.

I have to tell myself that things happen for a reason and that I can handle it. I can bear the burden. But I just have to question why both of my children need to be saddled with burdens themselves. Why their innocence needs to be taken away. They have done nothing to deserve this.

My Heavy Heart is a post from: D-Mom Blog