Corey's cardiology appointment this morning.....

.......went fine. Corey had an EKG and an echo, which he was a superstar for (he ate lollipops and watched "Shrek" the whole time). We took some video footage finally (we've never done that before), so we'll be able to show that to him in the future.

The big question today was, "When will the Fontan be done?" We want to wait 'til April, but we weren't sure if Dr. Brenner would tell us that we needed to proceed now. Luckily he agreed that Corey is doing very well, his heart looks good, and we can wait 'til April for the Fontan. Thank God. I am not ready. And it would break my heart if Corey missed Halloween - he's so excited about it. Luckily it all worked out.

The next step is a cardiac cath in early March. We will let you know as soon as we have a date for the Fontan as well. Until then, we wait and try to continue enjoying Corey.

Cardiology Appointments

Corey has an appointment with his pediatric cardiologist at Hopkins on Monday morning. I am hoping that Dr. Brenner will agree to delay the Fontan until April, as planned, but he may not. If he tells us we need to proceed with the Fontan now, I may faint on the spot. I am not ready.

I also have a cardiology appointment with the Hopkins doctor who followed me through my pregnancy with Mason. He's the Director of Cardiology, so he's very busy, but he agreed to squeeze me in. I go on October 7th. Until then, we wait.

Here's hoping that it is all good news this Monday and the 7th.

Mason likes to scare his mommy and daddy!

We've had two terrifying incidents with Mason lately. The first happened when we all went to the bagel shop and then went grocery shopping at Giant one Sunday. Giant has these great carts with little cars on the front (we call them "drive it drive it!" carts), and the boys love to sit in them, turning the little wheels, while we grocery shop. So, there were none of these carts in front of the store on this particular Sunday, but I saw one out in the parking lot in the cart return. I left Damian with the two boys in front of the store, and I went out into the parking lot to retrieve the cart.

As I was driving the cart back toward Giant, Damian was distracted by Corey, Mason saw me and his favorite cart, and he bolted straight out into the street toward me. Oh my God. I saw red and started screaming Damian's name. Everything from there happened in slow motion. Everyone in the parking lot and the front of the store turned to look at me, and Damian ran out after Mason as he was halfway into the street. If a car had been rounding the corner at that moment, he would have been killed. Thank God there were no cars there in that moment. I was initially upset with Damian for turning his head away, but really it could have happened to anyone.

Event number two happened one morning when I was home alone with the boys. I clipped the boys' fingernails and then gave them a treat afterward. Corey opted for candy corn and Mason wanted a lollipop. Stupidly, I gave it to him, thinking that since the candy is on a stick, it would be fine. Mason bit the hard candy off the top of the stem and then he started choking on it. It was lodged in his throat, and he was getting no air. His eyes were saucers as he looked up at me.

My first thought was, "Oh my God, he's going to die!" I nearly panicked. Then, thank God, I remembered the CPR class we took after we found out that Corey has TA, and I flipped him over on his stomach and whacked him hard on the back between the shoulder blades. On the third whack, the lollipop came flying out, and Mason started to cry. And I started shaking like a leaf.

He's fine, but he wailed and he gestured to his back as if he was angry at me for hitting him. I tried explaining to him that I did it to help him. Who knows whether he got that, but he's alive.

I remembered whacking that doll for practice in the CPR class, and I am so glad I did that. I felt like it was a little over the top whacking the doll as many times as I did, but now I'm so happy I did, and that the instructor critiqued my whacking, because it saved Mason's life that morning.

The last event was actually more funny than anything. This morning Mason walked into our bathroom, took his daddy's deodorant out of the drawer, popped the top off, and stuck his tongue right on the gel. He immediately dropped the deodorant on the floor, stuck his tongue out and started screaming this amazing high-pitched wail (which likely woke up every dog in the neighborhood), and started pointing at his tongue with both of his index fingers. The face he was making during all this was priceless - probably similar to the face people make when they eat those nuclear warhead sour candies.

As he was wildly gesturing at me to fix this bad taste problem, I stifled a laugh and handed him some water to drink. This did not do the trick, and he kept wailing and pointing, so I had him stick out his tongue and I brushed it with his toothbrush. That did it. He gave a little head shake and toddled off to see what other havoc he could wreak. Stinker.

Sesame Street Live!

Last weekend Jenn and I took Corey to the Baltimore Arena to see Sesame Street Live - Elmo's Green Thumb. We talked to him about it the week leading up to the show and he seemed excited about the experience. For Jenn and me, it was about spending rare quality time with just Corey since Mason spent the afternoon with Nanny and Papa.

After buying some fries, a drink, and a spinning Elmo toy that Corey loves we headed for our seats. Corey was excited to see the characters introduced one by one on the big stage. We were excited to see Corey enjoying the show.

Just before the intermission 40 minutes into the show, Corey asked when we could go home. We held his interest in the show until the break and decided that if Corey really wanted to go home, we would. He said he was sure he wanted to leave after trying out the automatic paper towel dispensers in the restrooms, so we were off. In all, it was a fun afternoon.

Here are some pictures we took at the event: Sesame Street Live photos

Sadness

Despite the seriousness of Corey's heart condition, I've tried to keep the tone of the blog upbeat most of the time. There are exceptions, clearly. In general things have been good lately, though. Corey and Mason are both doing very well, and for that I am thankful. This post isn't about them; it's not about Corey's heart. It's about me; it's about my heart. Although the events of the past few days will affect their lives forever as well.

Today I am sad. No, that's not the right word. I am heartbroken. I feel like a part of myself has died. I'm angry, and upset, and so damn frustrated that something else bad has happened. Haven't we, haven't I, been through enough already? Apparently not.

Some of you are familiar with this story, but many of you won't be, because I did not blog about it when it began. It began just as we were preparing to try for our second child. I was having problems with dizziness, so I saw my doctor, and she sent me through a battery of tests to determine the cause. Eventually we found the answer after a four hour glucose tolerance test - hypoglycemia. Diet controlled. Fine and dandy, right? Well yes, this took care of the dizziness, but I also had an echocardiogram, mostly as a rule-out measure.

Only it came back abnormal. I have an inferior wall motion abnormality in my left ventricle, and my ejection fraction is reduced. Further testing was done, including a nuclear stress test, a stress echocardiogram, and finally a cardiac catheterization, and the condition was confirmed. At the time, my prognosis was good. Well, what's the problem then, you ask? The problem is that I'm a generally healthy young woman, and you don't see this kind of abnormality in generally healthy young women. Unless they've had a baby and their hearts were damaged by the pregnancy. A condition called peripartum cardiomyopathy (PPCM).

This diagnosis was devastating for me, at the time, because it meant that I could not safely conceive another child. The heart, once damaged during pregnancy, is likely to be damaged again. I thought, "Oh my God, I will only ever have one child, and that child has tricuspid atresia".

But if I have learned anything from caring for my heart child, it's the value of a second opinion. Doctors are sometimes wrong, or don't see the whole picture. Also, part of the problem with the diagnosis of PPCM is that I didn't really fit the criteria. Women with this condition go into heart failure and then either recover (as I supposedly had) or succumb. As far as anyone knew, I'd never been in heart failure. Which is perhaps what led the second doctor, a cardiologist at Johns Hopkins, to conclude that I had not suffered from PPCM.

I was given the green light to conceive again, and I was so happy I thought I might float off into the clouds. To be safe, I was followed by the high risk OB/GYN group at Hopkins as well as the cardiology group throughout my pregnancy, and I did fine. Mason was born healthy, and the final echocardiogram I had while pregnant (2 or 3 weeks prior to delivery) showed an ejection fraction of 60% (completely normal - 50-75% being considered normal). Everyone appeared to be fine.

And so we have been living our lives, and all this time, we have been planning for a third child. Dreaming of a third child, talking about possible names, wondering if we might have a little girl to add to our family. And wouldn't it be fun to have some pink around here for a change? We were even thinking that it might be fun to be surprised about the baby's sex in the delivery room, since this would be our last chance to ever hear the words "it's a girl!" or "it's a boy!" shouted out with such joy.

But then I went to see my cardiologist for a follow-up echo, just to have my ducks in a row, thinking very little of it. You'd think that I would have learned by now never to take one of these appointments lightly.

My test results were abnormal.

The echo showed an ejection fraction of 40%. Under 40% and you're "really in trouble" he says.

My head started to spin as he told me that I'd need to have a MUGA scan to get a more accurate number. This test eliminates the human error factor in reading an echocardiogram, as the machine does the interpreting. I did that two days later. It showed an ejection fraction of 45%. 45% is not 60%. Why did my heart function decline so much?

The answer is that I probably did suffer from PPCM when I had Corey, and having Mason further damaged my heart. What does this mean for my own health? I'm in trouble in the long run. I need to start exercising more right now. I must exercise at least 45 minutes 5 days a week. The tissue of my heart is healthy, and the surrounding vessels are all healthy, but the muscle is weak. He likened it to trying to power an 8 cylinder car with only 6 cylinders. This I can do.

What I can't do is have my third child. The idea of walking away from that dream that I've had for so long, and leaving our family incomplete just kills me. I'm so desperately disappointed. I'm not sure I can even find words to express the depth of my despair. I already felt like our third child was part of our lives - we were just about to start trying for him or her. I was thinking about that baby all the time, and now the idea that this child will never be - it's horrible, and I hate it.

We're going to see our cardiologist at Hopkins again to try and figure out what happened, but the numbers don't lie, and I can't risk my life when I have two little boys who need me. So I will have to learn to wipe my tears and swallow this bitter pill of disappointment.

A Day of Embarrassing Moments

My story begins when somebody stole Corey's trike from our front yard. Oh I was hot! Corey loves his trike. All he wants to do anymore is ride that trike. "Mommy, can I ride my trike?" has replaced nearly all other requests. So you can imagine how dismayed I was to learn of its untimely disappearance.

Then I had to tell Corey that his trike was gone. I nearly bit my nails off in anticipation of that particular revelation. I started thinking about what I could offer him as compensation for the missing beloved trike. Lollipops? Chocolate? Cash? I knew none of it was going to be good enough, so I resolved to tell him fast and then offer to buy him a new one immediately. This really wasn't in itself such a big deal, because we intended to buy a new trike for Mason anyway, as Mason is big enough to ride one himself. (However, buying a new trike for Corey would still leave us one trike in the hole.)

Finally I took a deep breath and told Corey that his trike was gone. He burst into tears and buried his head on the couch, wailing, "When is my trike gonna be back, Mommy?!" Oh it broke my heart! I resisted the urge to bury my head in the couch, too, and told him that we were going to have some breakfast and then go right to Toys R Us to buy a new one.

Well, we got to Toys R Us and found a perfect trike (Batman, complete with sound effects), thank God, and I let Corey and Mason ride the trikes/cars/pull the wagons, etc. to burn off some energy. Which was fine, but then Corey announced, "Mommy! I have to poop on the potty!" Always fun in public, but certainly better than the alternative of him pooping in his underoos.

Which brings me to my first embarrassing moment of the day. I took the boys into the bathroom, Corey did his business, and when I went to do mine, Mason somehow managed to pull open the giant bathroom door leading out into the store, and he ran out! My 20-month-old child. How is he strong enough to pull that huge bathroom door open? And while my pants were down around my ankles! So I had to run out of the bathroom as I was pulling my pants up. Oh yes, that was fun.

Picture this: I was using one hand to pull up my shorts and the other hand to grab and lift Mason. This was only witnessed by a Toys R Us worker, and she just laughed. Possibly she has seen this before. I don't know, but really, I didn't care. I just wanted to get my child into the cart before he headed for the parking lot. Stinker!

But that was not to be my last embarrassing moment of the day. As if the shorts-down-to-my-ankles episode wasn't enough, later on I had another moment which was nearly as bad with Dr. Doug, the Hopkins ER doctor who lives across the street from us. Dr. Doug was there when I went down with my first vestibular migraine, so I have fond feelings for him.

So here's what happened. The boys and I were cleaning yesterday, so I had on my cleaning outfit (short shirt, ugly shorts, hair everywhere, etc.). Well, I stopped for a break and to eat a banana, and I looked outside to see that Corey's stolen trike was back. Wa hoo! Well, as you might imagine, I was so excited that I ran right outside - banana in hand, in my cleaning outfit, with my hair everywhere - and of course I ran smack into Dr. Doug. Oh Lord! I thought, "Kill me now!" So I explained that we were cleaning, and that Mason was helping, and then I went back inside and buried my head under a pillow. Literally.

Corey said, "Mommy, what are you doing?" I said, "Mommy is hiding."

The good news is that we now have a trike for each child, so everybody is happy. And now I will leave you with a funny Corey quote. I left Corey in the bathroom to do his business, and when I came back in to check on him, I saw that he had unrolled and then re-rolled the entire toilet paper roll. Yes that takes talent. I said, "What is going on with the toilet paper?"

And Corey, in a completely serious voice, replied, "I've been workin' on that all week."