Jump Rope For Heart

Yesterday, Simi and I jumped some rope to benefit the American Heart Association. It was quite the fun event! Sponsors, thank you VERY much for your support. Together, we raised $100 to benefit the American Heart Association.

The event was done during Simi's gym class. The gym teacher had five stations set up within the gym. The stations were: traditional jump rope, hippity hops, individual trampolines, hop scotch pads, and "new-fangled" jump ropes. The children did the activity in each station for five minutes while the teacher played some fun music. The music stopped, then the children stopped, returned the item to its proper location, then did some gross motor skill (skip, roll, crab crawl, etc.) over to the next station. The music played and off they went. In this particular classroom, about five mums showed up to participate (me included) and all of us children and mums got our heart rates up for the half hour class. It was really fun!

Simi's Scar, One Year Later

Here are a couple of pictures of Simi now, one year post surgery. You can't really see it in the first one, the second one is bit closer. 

Ugh!

This is Liz speaking. I need to tell you: Seeing those pictures brings me right back to surgery time again. I feel all those emotions just like I felt them a year ago. Ugh! I am SOOOO very glad that we are on THIS side of the surgery and now Simi's fine and we never have to think about it again. Simi DOES have his one year check-up, which is scheduled for some time in December. But that's no big deal. Phew!

Raj and I mentioned the anniversary to Simi. He mentioned that he has memories of Boston. He remembers parts of the hospital visit: making a building with me with the cardboard "bricks" in the play room (which happened before the surgery), playing with cars with me in the play room (which happened the night before he was released), watching "A Bug's Life", and Raj sleeping with him (although it was actually me who slept with him). When asked if his memories were happy or sad, he responded, "happy". I'm 95% sure that he doesn't remember the surgery. I remember Dr. Breitbart saying something about the pain medication they give the children helps them "not remember" that day. That's nice. I remember bawling my eyes out that entire day and just thinking about it brings back the anxiety I felt - in full force. I've somehow managed to keep that anxiety away from Simi, and we managed to fill his "adventure" with fun and love and that's what he remembers. Phew!

Raj took a photo of Simi and his scar and will post it as soon as he can. In the meantime, I think I'm going to write and write and write and push those pictures WAAAAY down to the bottom of the page.

Simi's Scar, one year ago

Here area a couple of pictures of Simi after the surgery last year. The first is still in the hospital, the second back at the apartment and in much better spirits!

-raj 

Simi and Dr. Pigula, one year ago

Here's a picture of Dr. Pigula talking to Simi the day before his open heart surgery. We didn't post any pictures of the trip last year, so I (Raj) am going to post a few of them now, one year later, and here's the first. Dr. Pigula was the surgeon and was wonderful. 

This Time Last Year...

This time last year, we were traveling to Boston to get Simi's heart fixed. I remember the caldron of emotions that engulfed me during that time. All those emotions come bubbling right back up to the surface like it was happening all over again.

I'm so glad we're on this side of the surgery.

Simi's doing great. He's still nursing his broken arm. He's still thin, although not as "concentration camp victim" thin as he was last year. He's much bigger now.

More later; I'm beat.

Celebrating an Anniversary

On October 6, 2005, almost exactly a year ago, Simi had his atrial septal defect repair. We call it "Our Boston Adventure" since the repair was done at Children's Hospital Boston and since we worked on putting fun into the experience. Mission accomplished. The stuff Simi remembers are the fun parts - like going to the aquarium and seeing the Wallace and Grommit movie. The only residual from the repair is a thin, silvery scar down his chest and a HUGE fear of medical procedures.

One of the highlights of our Boston Adventure was picking up acorns in the park across the street from our temporary Boston apartment. We also picked up acorns at the follow-up cardiology appointment here in Raleigh. Kelly Kunkel, a good friend of ours, suggested we plant the acorns. Surprise surprise - they grew! Now, to celebrate the anniversary, we planted the little oak trees outside.

Now let's hope they grow into big, tall oak trees that are as strong as Simi's heart.

Oak Trees

The day before we left Boston, MA after getting Simi's heart fixed, the boys picked up acorns in the park across the street from our apartment. According to Simi, it was one of his favorite activities of the trip. He loved it so much that he continued to pick up acorns once we returned home.

One of our friends suggested we plant the acorns as a remembrance of the trip/experience. We loved the idea and Raj searched the Internet to find instructions on how to get them to grow.

The Simi and Asher helped us plant the acorns in soil, and we waited...

We now have more than five little oak trees growing in our window box. Lovely reminders of this time of rebirth.

Speaking of Heat Defects...

The Winter Olympics are now upon us and we get to watch the Olympic athletes doing their thing in Italy in search of the ultimate SMO (shiny medal object). It surprised me to learn that Shaun White, the red-headed American who won the gold medal in snowboarding, had two heart surgeries before he was a year old to repair a congenital heart defect.

Looks like his heart is fixed.

Way to go Shaun! Congratulations on your achievements.

Hindsight

It's been over four months now since Simi's open heart surgery. He's fine now. We've moved on, happy to be on this side of the surgery.

And not a day goes by when I don't think about the surgery in hindsight. We did the right thing. We went to the right hospital; got the right doctor. Simi had the best repair; the best possible recovery. And he's now better than new. We can breathe a sigh of relief. And we can move on.

And every day I give thanks for that outcome.

Three Month Mark

On January 6th, we celebrated Simi's 3 month anniversary of his open heart surgery. This day is significant in that his bones should be completely healed and he has no more restrictions on his activity. He can now climb the monkey bars or collide with school-mates on the playground without fear of injuring his breastbone.

Other than that, it was a normal day.

Simi has gained a total of 5 lbs. in the 3 months since his surgery. That's an increase of 20% over his original body weight. He looks great! If you look at him, you'd still say he's quite thin, but he's a "healthy" thin rather than a "concentration-camp victim" thin.

Understanding Simi/Being Four

When Simi was in the hospital for his open heart surgery, after the surgery, every small procedure was a really big deal. For example, each time the nurse took out a line, I rejoiced because it meant that he was improving and was one step closer to going home.

Simi didn't see it the same way I did. To him, getting a line out meant pain. It was a BIG DEAL. He fought and cried and did everything he could to prevent the nurse from removing lines, band-aids, etc.

On the day he was released from the hospital, the nurse removed the last IV line from the back of his hand. I explained to Simi what the nurse was about to do and he cried in sheer terror. He told me that he didn't want them to remove the line and preferred that it stay in forever.

When I (Liz) was in the hospital yesterday for the version, the first thing the nurses did was take blood and insert an IV line. I'm terrified of needles, so this is a big deal to me. When the version was cancelled, my first thought was that I had a needle for no reason at all. That's a BIG DEAL.

When it came time for me to leave, the nurse moved to remove the IV line. I wanted to cry. Instead, I asked her if we could keep it in because sometime soon I'd be back to have the baby, and I'd need it then. Wouldn't it save them time, I reasoned, if the line was already in? I would rather that line stay in forever than have the nurse remove it. Nothing doing; the line came out.

I now know how Simi felt...

Fat Boy

Last year, we worked really hard to get a one pound weight gain on Simi. That's right - after us practically stuffing food in his mouth and feeding him Ben & Jerry's ice cream (which has the highest fat content in ice cream) nearly every night, last year Simi gained a whopping one pound. Although his height was in the 50th percentile for his age, his weight was below the 5th percentile. His weight was one of the reasons we wanted to fix his heart defect sooner rather than later.

With the hole in Simi's heart, his body had to work harder, which burned more calories, which caused him to be skinny.

Now, less than 3 months post surgery, Simi has gained 4 pounds. Can you believe it? He's gained four pounds in less than three months. Without us stuffing him at every meal or force-feeding him ice cream, the kid has gained over 12% of his total body weight in such a short timeframe. In fact, he's gained more in the last two months than he has in the last two years combined!

He now has a little bit of meat on his bones. And when he's sitting down and he bends over, he has a teeny tiny little bit of a belly.

Woo hoo!

!

I have a confession: every time I see Simi's scar, I want to cry. I get this lump in my belly and this big rock in my throat and think that it was Raj's and my decision to hack up our child. We marred his beautiful body and gave him a permanent scar - a great big bang ! - on his chest.

When I'm with him, I act non-chalant about it; I don't want him to be self-conscious about it or think there's anything wrong with having it. I do everything I can not to draw attention to it. But it pains me to see my baby all carved up.

I knew I'd feel this way. I thought about it a lot before the surgery. I even had photos taken of him in a bathtub setting (with Asher) so we can have a permanent memory of his perfect chest. And rationally, I know we didn't have a choice - that scarring his beautiful body was the only way we can fix his heart. And fixing his heart was more important that having an unblemished chest. But there it is - right on his chest - the perfect exclamation mark. !

Well, I guess if you're gonna get a scar permanently placed on the middle of your chest, then it should be a good one - like a ! A very appropriate symbol for it's purpose. Yep!

So why does it upset me so much?

A Weighty Issue

Simi's a small kid for his age. He's about average in height but he's very skinny. During the past year, he's barely gained a pound. We feed him ice cream nearly every night before bed (Ben & Jerry's, which has the highest fat content) in an effort to put some bulk on his scrawny frame. With all that we've pushed into his mouth, Simi has managed to gain a mere one pound this year. This entire year, he has managed to stay at around 29.x pounds. After a full meal, after dinner, bath, soaking wet, he'd MAYBE manage to get to 30 lbs. His lack of weight gain was one of the reasons why we wanted to have his ASD repaired sooner rather than waiting any longer. He is in the 5th percentile for weight and there was a concern that it may soon affect development of vital organs, such as the brain.

See, with his heart defect, his body had to work harder. That means that Simi's body burned more calories than other boys his age.

So now the hole is closed.

He got on the scale last week. Morning weight. Naked. Before breakfast. After potty time. 31.2 pounds. HUH? This kid, the one who managed to barely gain a pound all year, gained a pound in 2 weeks time. HUH?

This morning I weighed him again. Again, it was the first thing in the morning. Naked. Before breakfast and after potty. 32.2 pounds. HUH? He gained a pound in a week? Can that be possible?

We'll keep you posted on his progress...

Back to School

Simi returned to school full-time this past Monday. He was so excited to see all his friends and his teachers. He really missed them.

I can't believe that 2 weeks after open heart surgery and the kid is running around nothing ever happened.

Having said that, his poor teachers have the most difficult job. The kids are on the playground several times a day and they get to keep him from hurting himself. They're in an unenviable position. Every day we tell Simi when we drop him off at school, "Stay in the sandbox, Simi", and so far, he has. We'll all breathe a sigh of relief 3 weeks from now, when he's 6 weeks post-surgery and much more fully recovered.

Running in Circles

In some ways, this recovery thing has taken a different turn.

During Simi's open heart surgery, the surgical team cut open Simi's breastbone to get to his heart. Now, he needs to give his bones time to mend. This means no falling down. Which means we need to keep him from running around so that he doesn't fall down.

Problem is, Simi has about 10x more energy than he did BEFORE the open heart surgery. Guess his body really and truly was working harder due to the defect. Anyway, today after nap time, Simi was running in circles in the living room, then jumping from the furniture onto the floor. Raj was home with him and had a heck of a time getting the kid calm (let's do a puzzle, Simi.).

These bones just can't mend fast enough!

Completely Fixed

We went to our local pediatric cardiologist for our follow-up appointment today and received surprising news: Simi never has to return. His heart defect is completely fixed!

The doctor listened and did a short ultrasound to check for fluid around the heart and/or leaks in the patch - both of which are common complications. Everything looks perfect.

Raj and I were both thrilled. Simi was excited that we can now leave the doctor's office and go pick up acorns.

We've never had a cardiology appointment where we didn't make a follow-up appointment. It seemed weird to walk out of there knowing that we won't return.

Our challenge now is to keep this increasingly energetic kid from hurting himself. It takes some time for his bones to heal and we're supposed to keep him calm. HA! This kid has more energy than ever and it's really hard to keep him from running around.

And for the curious, the size of the hole (or should I say: former hole?) is about the size of a quarter.

Back in NC

We are back in sunny Carolina! Truthfully, we're exhausted, so perhaps we should blog tomorrow when we can actually type complete sentences.

Until then, here's some good news worth sharing:

Simi's back to his happy self again. It doesn't even seem to bother him that he has this nasty gash down his chest. He just calls it his "boo-boo" or his "scar" in a rather non-chalant way. He's an amazing kid.

We asked Simi to name the highlight of his Boston Adventure, part II. Immediately, he talked about picking up acorns in the park across the street from our apartment. He carried those acorns all the way back to NC, by the way. So now you know: picking up acorns ranks higher than getting a heart fixed (from a 4-year-old's perspective).

Although it may be temporary or perhaps completely unrelated to his heart, Simi's actually eating A LOT. Twice in the past few days he's even mentioned that he's hungry! The kid is nearly 4 years old and I can't ever remember a time when he's looked forward to eating or even confessed to being hungry. Regardless of the reason, it's music to our ears and we're happily feeding him.

Last, although Simi and Asher have been extremely close, I think this trip has made them even closer (if that's possible). They missed each other terribly while Simi was in the hospital. Back at the apartment, they shared a bed. From a parent perspective, it was amazingly cute to see them sleeping together. Now that we're home and they're each sleeping in their own beds, it'll be interesting to see how well they sleep without each other. (Selfishly, I hope they sleep LATE tomorrow!)

And on that note, it's now 8:15 PM and well past OUR bedtime. We'll write more about the rest of our Boston Adventure, part II tomorrow.

Boston Children's Hospital

I can't believe I've been forgetting to mention what wonderful care we're getting here at Boston Children's. I'm so incredibly glad we chose to come here to fix Simi's heart; I can't imagine a better place. The surgeon did a great job; he truly is a miracle worker. The surgical team took great care of Simi during the operation. The surgical liaisons did a great job taking care of us during the surgery. And all the nurses and doctors on the floors are just incredible. It's because of them that Simi has healed so well. I'm forever indebted to them.