The Waiting Game

Several of our heart friends are gearing up for Fontan surgery this summer. Fontan is the final procedure of the three stages most HLHS patients undergo to "re-route" their plumbing, so to speak.
(For a more comprehensive explanation, check out this link: http://en.wikipedia.org/wiki/Fontan_procedure)

This strikes close to home for us, as Jonas is closing in on age 4, and still has no date in sight.

On one hand, this is fantastic news: Jonas is healthy enough for now that we don't need to rush into surgery.
Some HLHS patients require their Fontan as early as 18 months old. When Jonas was first diagnosed after birth, we were told most children undergo the last step on average between 2-4 years old. The goal is to complete the process before Kindergarten, so the child doesn't miss a large portion of school while recovering from surgery. Like most children with a congenital heat defect, Jonas is slow to gain weight.
He's a great eater, but he is also just as active as a heart healthy child, so the weight he does gain rarely sticks. Weight is a central focus for heart patients, because many procedures hinge on them being a certain size. Miami Children's Hospital requires Fontan candidates to be at least 30 lbs. before they can be scheduled for the procedure. The reason for this is the tube that is inserted to assist with blood flow to the heart will not grow with Jonas as he ages. The human heart reaches adult size at age 5. The older he is, and larger he is, the better it will be for his overall  heart function. It also decreases the need for surgical intervention at a later date. Jonas hovers around 26-27lbs, and has for quite some time.

                                          Sick? Who has time for that? 


So why am I stressing about this procedure? The bottom line is this: Jonas will have to have this surgery, it's just a matter of when. He's not going to "get better" and not need it. He's not going to magically grow a left ventricle. It's increasingly frustrating to me that we have this big question mark hovering over our future. I would much prefer to just get the procedure over with. Of course, it needs to be done at the optimal time for him, and now is not that time. We've just been living such a routine existence, that this is going to shake everything up. Our "normal" is a lot more normal than most heart families: Jonas has only had one hospital visit (A routine cardiac catheterization to check on his heart function) since his second stage surgery at 4 months old.  We only see his cardiologist twice per year. We're not in and out of hospitals, and he doesn't have any other medical conditions.

I know I need to be patient, but it's easier said than done at times.

Finally, my thoughts and love are with all the families going through this phase this summer.

CHD Awareness Month Wrap Up

So we're now into March, and one of the busiest months of my year is over.
Being a Heart Mom means advocating year round, but my calendar is especially filled each February.
What did I do for CHD Awareness Month?
I organized and promoted a group art show with some of my best friends, raising $150 for Angel's Pediatric Heart House. This organization has done so much for so many families, including my own.
I spoke out about Jonas's condition on local radio and television stations.
I posted educational materials on Facebook, and distributed them in person.
Jonas and I wore red for an entire week straight!

I hope that in some small way I made an impact on my community, and beyond.
I am but one person, trying the best I can to be a good mom and advocate for my boy.

The outpouring of love and support we received from friends and family throughout the month warmed my heart, more than I can adequately express.

Kristina created a beautiful painting of Jonas from a photograph she took of him, bringing tears to my eyes the instant I saw it. Joel came to The Bubble and played an acoustic set before a later obligation in South Miami.


Art By Kristina DaSilva


Jonas dances to Uncle Joel's music



Friends near and far shared my event on Facebook. Shared stories about their experience with Jonas.
Jackie Ross devoted an entire month to sharing the stories of heart babies in our community, including Jonas's.
His story was also featured here on XOJane.com, a national women's lifestyle website.

I met wonderful new people, including artist and CHD survivor Danny Kidwell and fellow local heart parents  Kelly and Reese Robinson and Alisha and Chance Horner.

This journey began unexpectedly 3 1/2 years ago, but we're taking it in stride, and doing the best we can.
I just want to be the kind of mom Jonas can grow up to respect and admire.

Reality Check

My thoughts will probably be scattered on this one, so bear with me.

I'm a member of an incredibly special support group on Facebook, called Heart Mamas.
Across the country and around the world, moms with babies of all kinds of congenital heart defects come together and exchange advice and support for each other.

Sometimes, inevitably, a child passes away. Learning that a heart family has lost their fight is always incredibly saddening.

Last night, a baby girl named Addison lost her fight with HLHS, the same condition Jonas has. She was 3 years old: The same age as Jonas.
She was healthy going into the third and final stage of the procedures that almost all HLHS kids undergo to repair their hearts to work at the best of their ability.
She had the Fontan procedure, (Which Jonas is still about a year away from)and it didn't take.

Within a very short period of time, she received a heart transplant. She was discharged to Ronald McDonald house and all was looking well, until she came down with a high fever and infection. Unfortunately, things quickly took a turn for the worse, and she passed away.

My heart aches for this family. Just when it seemed like things were looking up, they lost their precious little girl.

As I sit here in bed with Jonas, watching him snuggled up on my pillow (That's almost as big as he is)I can't help but be SO THANKFUL. And also afraid.
While it's true that any of us can go at any time, the threat for us is all too immediate and far too real.

This little girl's story hits so close to home, because we're not in the clear yet.
To be honest, we're never going to be. There is no permanent fix for HLHS.
All we can do is hope for the best, and cherish every moment in the meantime.

I can't live every day as though the end is near, but I must never take for granted how lucky I am to have the precious gift of this boy in my life.
I will love him with everything I have, and teach him to be the best he can be, for as much time as I am given with him.

In true 3-year-old fashion, he'll wiggle and squirm when I squeeze him too hard and kiss him more than he'd like. And I'll smile and laugh as he giggles and tries to run away, because these are the moments that matter most.

Miami Children's Hospital 5k

On Saturday, September 29th, I scooped a sleeping Jonas from his bed in the early morning hours. We had a long drive to Coral Gables for the Miami Children's Hospital 5k Walk/Run. 10 of us became "Team Jonas" for the day, raising over $600 for the hospital and taking on the 3.1 mile challenge.

For some of my friends, this was their first 5k. They made the effort to register and participate because they love my little boy that much.
For others on the team, they reached their personal best time.

Jonas and I took the path at a medium pace. I pushed his stroller and chatted with Joel, who decided to stay with us for most of the walk. I wasn't trying to break any records. I don't have a jogging stroller, and I've been advised not to put too much strain on my already less-than-whole kneecap.

Jonas was a trooper, never once protesting about the long walk. He enjoyed taking in the pretty trees and sprawling houses in the neighborhood. He'd ask where some of our faster friends were, and I'd answer that we'd see them at the end of the race.

We arrived at the finish line at 1 hour plus a few seconds. As soon as we finished, officials were organizing the first wave of the Kids' Race. Kristina and I left Joel with Jonas's stroller and walked him over to the "Start Line".

We each held one of his hands, feeling the excitement radiate from my sweet boy as he ran as fast as any child with a whole heart. He was running carefree, full of joy, and so much of this was because he was treated with such skill and heart by the professionals at the hospital we were running for.

Jonas crossed the Finish, and a little girl was waiting with a medal that seemed to weigh as much as he does! He was so proud, he talked about racing for the rest of the day.

We stayed for an hour or so after the race, chatting with our team members to see how their run went. Jonas played on the inflatable playground and bounce house until we had to coerce him out because they were packing up for the day.

The event was sponsored by the radio station Luis works for, so we spent some time at their booth as well.

It was a great day surrounded by friends and love!

Catheterization, Occulsion, and Good News

Jonas, Luis, and I piled into the car on Thursday morning, August 16th, for our trip to Miami Children's Hospital. After weeks of playing with rubber gloves and shoe covers, and calling himself "Dr. Jonas", he was excited to go.

We checked in without hassle, and made our way upstairs for pre-op. We discovered the team was running behind schedule with the patient ahead of Jonas, so we busied ourselves with toys and crayons in the waiting room.

Eventually the anesthesia nurse came in, administering Jonas with "silly juice".
He loopily swayed back and forth, saying "woah, woaahhhhhh" and slumping over in his dad's lap. True to form, I heard him chatting away to the nurses as they wheeled him down the hall, asking which direction they were going next.

Luis and I left the hospital for lunch, as we'd skipped breakfast in solidarity with the kiddo not being able to eat. The echocardiogram and catheterization take a total of 3 hours to perform, so we went to the mall and did some browsing to kill time.
We attempted to lighten the mood with a little game of air hockey, in which I lost horribly.

Updates came via telephone every hour, until we drove back to Miami Children's at 3:00p.m. to wait for him to return from the recovery area. Half hour later, Dr. Khan spoke with us about the minor repairs he made.

Jonas's heart condition lends itself to abnormal lung arteries, which Dr. Khan repaired with collateral occlusion, inserting two coils into Jonas's lungs to improve circulation and blood flow.

He showed us the scans of Jonas's heart and lungs, which look fantastic for a child with a congenital heart defect. There is just one minor narrowing of an artery, not narrow enough to cause concern.

It was explained to us that the final step of his heart repair is put off until he reaches 30 lbs. because (unlike previous repairs that utilize existing tissue) the 19mm tube that is inserted into the inferior vena cava will not grow with him. The tube must function just as well when he reaches 150lbs. as it does at 30lbs.

Because Jonas is slow to gain weight, (as are the majority of people with CHDs)he will likely be 4 years old, possibly closer to age 5 before the Fontan surgery.

After meeting with Dr. Khan, we settled into a private room. Jonas awakened groggy and upset, yelling "Nooooo, I wanna get outta here! I wanna go home!"
After some cuddles and reassurance, he'd fall back asleep for half hour or so before repeating the process twice more.

He finally stayed awake, watching "The Muppet Movie" and happily devouring a popsicle and some Gatorade. As the evening wore on, he repeatedly asked to get out of bed and play with his cars on the floor. It was difficult to make him understand that he had to keep his leg straight (6 hours total) post-procedure.

We wrapped his lower half in blankets, trying our best to keep him still and distracted. Around 7:30 he feasted on chicken nuggets, fries, carrot sticks and apple sauce.

By 9:00, Kris had left and Luis and I pulled out lounge chairs, scooting them side by side to watching "Breaking Bad" on the laptop while Jonas started "Cars 2" for the third time in a row. A nurse came in periodically to check his blood pressure and oxygen saturation levels. Around 11 we all fell asleep, virtually keeping to our regular routine (Save for Jonas falling asleep to television, which does not happen at home).

He only awakened once during the night, at 4a.m., asking for a hug from mommy.
By 7a.m., a new nurse had arrived, and we were up for breakfast with "Cat in the Hat" and "Curious George", again sticking to the usual routine.

Jonas was in a great mood, and finally able to get out of bed. We unhooked him from his blood pressure cuff, and he played with cars and legos on the floor for a few minutes, until it was time to go for an x-ray.

The x-ray went quickly, and Jonas was happy throughout. He followed directions well: Hold up your arms, look at mommy, turn to one side.

Back in our room, the residents came by for rounds. They asked me some basic questions about Jonas and his condition, surprised that he had no other complications or health issues. They noted that he is extremely verbal and alert; and, despite being small for his age, he's a fighter.

We spent time in the playroom across the hall from his room, awaiting discharge papers. By noon on the dot we were signed out and ready to go, and what a relief!

Just another adventure with the boy with half a heart. It's good to be home, and back to "normal", despite Jonas having some residual back pain, and a fear of having band-aids ripped off.

I surprised myself by remaining in a good mood. I never got anxious or cried, and Luis kept me in good spirits by being so supportive and loving.
Being able to stay with Jonas overnight made all the difference, I knew how he was doing and that he was nearby.

Happy Birthday, Lil' Dude :)

It's that time again. Tomorrow, Jonas will be 3 years old.
I am thankful for every single moment, every day:

When I'm snuggled up in bed with him, watching Yo Gabba Gabba on the laptop.

When I'm counting to 3 because I've already asked him several times to do something, and it's the only way he'll listen...because when I make it to 3, I'm holding his hand and guiding him to do it anyway, and he's much too independent for mommy's help.

When he's singing the alphabet, because no matter how many times we go over it, he still skips the letter "E", and says "KIM" instead of "K-L-M"

When he makes me take him to the potty in public, just to circle the toilet 5 times, sit on it and not actually go, but still wants to flush.

When he tells me: "I love you, mommy. You're my best friend, and you're awesome"

I have a thousand Jonas stories and memories in these 3 short years. I store them up in my brain the best I can, because they are precious moments with a child I couldn't be any more lucky to have. He's the sweetest, most easygoing, loving child I've ever known-and I'm not just saying that because he's mine.

He's a ray of sunshine, even when he's got a grouchy look on his face.

I cannot wait to see what this next year brings, and the one after that, and the one...you get the point :)

Happy 3rd Birthday, kiddo! Let's celebrate another year together, and many more to come <3 class="separator" div="div" style="clear: both; text-align: center;">

Pre-Surgical Orientation: July 31st, 2012

We made a trip down to Miami Children's Hospital yesterday, for pre-surgical orientation.

A woman sat with a small group of children and their parents, explaining to us in kid-friendly terms what to expect during our upcoming visit. Jonas played with a toy thermometer, stethoscope, and blood pressure cuff. We were given a tour of the pre- and post-op areas, as well as the waiting room, and the recovery room on the cardiac unit where Jonas will be staying overnight. This was a really positive experience for him. He was sent home with his very own "Dr. bag", filled with mask, cap, tongue depressor, and other goodies to play with. He had fun playing dress up, calling himself Dr. Jonas. I know it will be different for him on Friday, when he's there as a patient, instead of a visitor. Returning to Miami Children's was a flood of emotions for me. I recounted our previous experiences to the guide, lump in my throat as I detailed our visits and his first two surgeries. As we rounded the corner to PICU, I was triggered with the memory of watching him being wheeled away for his first surgery. Just four days old, Jonas was being taken away from me. I pushed through the memory of my whole body heaving with tears, unsure of what would happen next. Friday's cardiac catheterization is a minimally invasive procedure. He's had it done before. It's not as bad as open heart surgery. This is all very logical and rational, but it doesn't stop the fear and worry. It doesn't quell the anxiety. I don't want Jonas to be afraid or in pain. I can only do so much to protect him. I will be by his side every step of the way. No one should ever have to go though multiple procedures, especially not a child as loving and amazing as my own. Today, we're going to snuggle. Watch cartoons. Blow bubbles. Because these are things I can control, and enjoying our time together is the best way to destress.