Summer Fun/Summertime Blues

On Thursday, my little boy will be finished with Kindergarten. I am so proud of him reaching this milestone!
On Friday, we're spending four days at Disney. What a perfect way to kick off summer! We'll ride all of his favorites, plus a couple he wasn't tall enough for last time. We'll eat good treats, meet characters, and swim.

I have been looking forward to summer break, because I can't wait to spend time with my favorite person, doing whatever we feel up to!
We'll hang out with our friends, practice reading, go to the splash parks, and have lazy days watching movies.
We'll also have a visit to Nicklaus Children's Hospital. We've been advised that Jonas should visit the Neurodevelopmental clinic, just to ensure that he is developmentally on track. We have no reason to think anything is wrong with Jonas's development. However, having a complex congenital heart defect (CCHD) is reason enough to be evaluated, especially because he was delayed in his first year of life.
Jonas is also due for a check-up with his cardiologist in July, though we may be able to forgo it if we have to do a stress test and echo at Nicklaus.
These are all "routine maintenance" items, so to speak. Jonas is as healthy as he can be for having half a heart. He is happy, well-loved, and spoiled rotten by everyone around him. But the hospital is an anxiety-inducing place for us both, under even the most ideal circumstances.
Our heart journey has been relatively smooth, and I struggle with mentioning anything at all. We don't have weeks or months of hospital stays.
We don't have an uncertain path. We don't have any upcoming surgical procedures. We are not listed for transplant. We are not in rehab. These are things many of my dearest heart mom friends are currently experiencing.
I am thankful for every moment I spend with Jonas, inside or outside of the hospital. But this does not make me any less afraid. Fear is a constant companion in my life. I am not saying this to evoke pity or sympathy. This is just my harsh reality. I am always living with some degree of fear, for what the future holds for my beautiful, bright son. There are so many uplifting blogs online, detailing how one must remain positive, and cast aside all fear and doubt. If you've spent 5 minutes speaking to me, you know I am able to put a positive spin on anything.
But I remain pragmatic. There will always be days that CCHD is the last thing on my mind. There will always be days that CCHD is the only thing on my mind.

Yesterday, Today, and Tomorrow

Jonas,

Yesterday I held your hand tightly, while tears streamed down my face.
I could not hold your body, there were too many wires in place.

Today I held you on my lap, you barely fit there now.
I'll keep holding you anyway, as long as you allow.

Tomorrow you will be as tall as me, I can't wait to see you grow.
There are so many things I am excited for you to know.

Yesterday I was afraid, of what tomorrow would bring.
Today we're here, and you are strong: We've been through everything.

Yesterday I watched the surgical team take you away from me.
Today your heart is beating, because they repaired it carefully.

Tomorrow I will watch you run and play, without so much as a care.
Yesterday I wasn't sure, that you would ever get there.

Tomorrow is not guaranteed,
not for you, nor for me.

But I promise you today,
you are loved in every single way.

~Mom

Everything Birthday is a Victory

When you're preparing to become a mother, there are some things you aren't given advanced warning on. Some of it is silly: like the fact that babies indiscriminately fart on everyone and everything. Some of it you cannot predict: like your baby will be born medically fragile, and you will count every birthday thereafter as a victory.

This week, Jonas will be 5 years old. This morning started just like any other. Luis opened Jonas's bedroom door, and sang him the good morning song. (One of us always does: "Good morning to Jonas, good morning to you. Good morning to Jonas, I'm happy to see you!" This started too long ago to recall, because when Jonas was a toddler, he'd say: "Happy see you.")

We snuggled on the couch. He pitched a fit when I turned the tv off so he'd focus on eating and getting dressed.

I am thankful for every snuggle and every tantrum. My boy has a strong will, and the strong lungs to match.
I gave him a voice to fight. A voice to laugh. A voice to cry.

I've been crying this morning. Tears of sadness for one heart family, whose son is struggling through a difficult post-Fontan recovery. Tears of joy for another heart family, who just had a beautiful Make-A-Wish trip with their son, who is beaming in every photograph. Tears of relief that we are celebrating this weekend without an impending procedure, for the first time since 2011.

I recently mentioned Jonas's heart condition to someone that doesn't know us well. She said: "Oh, but that's something he'll outgrow when he's older, right?" I tried (and failed) to stifle my incredulous laughter. I shook my head and said: "No, he's missing his left ventricle. He's already had three open heart surgeries."

She means well. She doesn't understand the various and complex congenital heart defects. 5 years ago, I didn't, either.
But it makes me feel like my work as Jonas's advocate is never enough, and will never be done. There are so many people that equate "heart defect" with "non-life threatening murmur."

In honor of Jonas's 5th birthday, I ask that you please share some facts about CHDs on social media. Creating awareness creates understanding. You can copy and paste these directly, and even use Jonas's photo.


Here are 5 facts about Congenital Heart Defects, also known as CHDs:


1. Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

2. Twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

3. Single ventricle heart defects, such as Hypoplastic Left Heart Syndrome, (Jonas's condition) are among the most complex and challenging forms of congenital heart defects to treat.

4. Surgery is NOT a cure for a CHD. You can repair the heart, but there is no cure for a CHD.

5. There is no known cause for CHD. Only 15 – 20% of CHDs are related to genetic conditions.



Happy 5th Birthday to my sweet boy. I'm looking forward to celebrating the victory of every year hereafter. <3

Just a Normal, Average Day

I will never know what it's like to raise a "normal" child.

We try to normalize Jonas's childhood as much as possible. We never want him to feel different, or excluded. No one likes to feel that way. Things are pretty "normal" for us, in some ways. In other ways, they're just...not. They can't be.


We wake up every morning between 7 and 8a.m. Pretty "normal," right?

Jonas can't eat breakfast until he takes his anti-reflux medication. This is a new medication he's on, and insurance doesn't cover it in liquid form for his age. So every day this week, we've had to goad and harass him (sometimes into a tearful rage) to either swallow the pill (yeah, right) or suck the pill's contents up through a straw from the bottom of a cup of juice. NOT NORMAL.

After 15 minutes, Jonas can eat breakfast. NORMAL.

After breakfast, Jonas doses himself with Enalapril, (for heart squeeze function) Lasix (a diuretic) and half a tab of aspirin. NOT NORMAL.

We usually watch some cartoons. NORMAL. Play outside with matchbox cars or his ball. NORMAL...except then he gets winded and sweaty because his body doesn't circulate and oxygenate like it should. NOT NORMAL, time to go back inside.

We sometimes grab a snack. NORMAL. Then we'll draw, color, or do an activity book. NORMAL. Sometimes when he's learning, I have an internal dialogue about whether Jonas is struggling with memory recall because he's 4 and has a corresponding attention span (NORMAL) or if being on bypass for 3 open heart surgeries has caused minor yet long term damage to his brain. NOT NORMAL. LOL

We usually have some quiet time with more cartoons, read a kid-oriented magazine, or play educational games on the computer. NORMAL.

During quiet time we'll snuggle, and here comes the internal dialogue again: "Is it ok that he's breathing heavily?" NOT NORMAL.
"Jonas, are you ok, bud?" "Yeah mom, just watching tv." NORMAL

Sometimes we run errands to the store. NORMAL. Then a rotten-sick looking guy comes within a foot of me, sniffling and sneezing, and I hope he doesn't make my kid sick because of his weak immune system. NOT NORMAL.

Every 6 months, we visit the cardiologist. NOT NORMAL.

Last week, I had to fill out paperwork for Jonas to enter Pre-K. NORMAL. The questionnaire asked: "Do you have any additional comments or concerns?"

Well. Yes. "Jonas has Hypoplastic Left Heart Syndrome. If he over exerts himself, he may need to rest, but he will let you know. Sometimes his lips turn purple when he's cold. It's ok, and not a real cause for concern." Instead of listing his pediatrician first, I listed his cardiologist first. NOT NORMAL!!! Come to think of it, I forgot to mention the fact that if he gets a scrape, the aspirin he's on thins his blood, and it'll look like a horror scene, but it's not nearly as bad as it looks. Sigh. NOT NORMAL.

Luis comes home from work. We have dinner, snuggle time, and sometimes reiki or meditation. NORMAL.

Jonas argues about going to sleep, and bargains for one more hug and kiss. NORMAL.

We lay down and go to sleep. NORMAL. In the morning, if I wake up first and Jonas is sleeping later than usual, I have another internal dialogue about what could be causing him to sleep so late. Is he just tired? NORMAL. Is it heart related? NOT NORMAL.

As much as I try to convince myself things aren't so different for us, I know that's not true.
I try to make it routine and fun in its own way. We're just doing the best we can, the only way we know how.

Roller Coasters

Two weeks ago, Jonas rode a roller coaster for the first time. We went to Magic Kingdom for one of Luis's media events, and Jonas had the opportunity to preview the Seven Dwarves Mine Train coaster. By all accounts, he loved it. He squealed, he laughed, and he asked to ride it again.

We came home from Disney, and so began our own roller coaster: One of a different sort altogether.

Jonas has been complaining of chest pains, off and on since January. He's had several echocardiograms, EKGs, holter monitors, and event monitors. None of these have caught anything out of the ordinary. Still, the pain persists. I cannot easily convey to you what it feels like when your child, a child who has had three open heart surgeries, complains his chest hurts and his heart is beating "too fast."

Last week, we visited Miami Children's Hospital twice in search of answers. By Friday, arrhythmia had not been ruled out entirely, but it had been moved to the bottom of the list of concerns. At the top of the list are gastrointestinal issues. He has a GI appointment next week. He will also need an exploratory catheterization, we're just not sure yet how soon.

By Saturday morning, Jonas had a fever. We stayed in bed all day watching cartoons and hoping to catch a break.

As I write this, it's Wednesday night. He has not complained of chest pains all week. His fever is gone. He still has a congested cough, but everything else appears to be fine. We're constantly in a state of flux. Things are good, things are bad, things are good again. This is not what I expected post-Fontan, but I should know by now not to expect anything to be smooth sailing. That is just not how things are meant to go, and this is our reality.

Tonight, Jonas fell asleep in the car on the way home from dinner with our friends. I gently scooped him from his car seat, as I have done hundreds of times over the last nearly 5 years. He softly whispered to me: "We're home? I'm tired." I pulled his long, lanky frame close to my chest, his body limp next to mine. He rested his head on my shoulder, his smooth cheek pressed against mine. I kissed his head as he whispered: "I love you, mommy." I couldn't help but think about what a completely ordinary moment this was. My little boy, ready to be tucked in for the night. Snuggled up close to me. In this ordinary moment, there was no congenital heart defect. There was no hospital, no procedure, no impending sense of fear and dread. Just a mother and her son, sharing small space in a vast universe.

In reality, this recent trip was not Jonas's first time on a roller coaster. We are constantly riding one. Tomorrow, I choose to laugh and squeal with Jonas. I wouldn't have it any other way.

Post-Fontan!

Merely typing those two words: "POST-FONTAN" feel like a weight is being lifted from my shoulders. We're just under a month from the date of Jonas's final surgery, and every day we see more positive changes.
On Friday, Luis and I took him for a bicycle ride in our neighborhood. I used to be so proud of him for riding the two blocks to the playground near our house. I wanted to conduct a test, so I asked Jonas if he wanted to ride further. He said he did. I checked on him several times throughout the ride, so much that I think he was starting to get annoyed with me. By the time we reached Holiday Park, Jonas had ridden his bicycle nearly 2 miles. From two BLOCKS to two MILES. I was flabbergasted.

Jonas has always been an energetic little boy. But there's no more "I need to take a break" after long spurts of energy.
His color looks great. He has rosy cheeks and pink toes. Beautiful, dark pink lips.

We went through hell in the hospital. For 11 days, I witnessed his tiny body enduring more pain than most adults will know in their lifetime. And yet here he is, riding in the backseat of my car, singing songs and telling jokes.

I treasure his laughter...I always have. Especially now, after seeing him so hurt and sullen.

Every day I am given with Jonas feels like a gift. As corny as that may sound, I truly feel that way.
I have waited so long to write this blog, because I really don't want to rehash the hospital trauma.
We are able to move forward together happily, and in good health.
I couldn't ask for anything better to happen in my life, than to have Jonas healthy and happy.

He will always need to visit the cardiologist for check-ups. He may need small "tune-ups" into adulthood.
But I am remaining optimistic that the worst is behind us now.

It's wonderful to be home!

Mother's Day

There is no way to fully express what it is like to be a mother, but I am going to try.

In the months leading up to Jonas's birth, I wondered what it would be like to love him. Of course, I was already starting to understand, but I knew it would evolve once I met him. Little did I know it would continue to evolve and grow constantly.

I adore him with the kind of love that you can barely put into words. He is a fun person to be around. He makes my heart ache with joy for everything he is, and everything he is yet to be.

With each passing day, I learn more about him. His likes, his desires. He is happy, chatty, and outgoing.  Despite this, he is quiet around large groups, until he gets more comfortable. He is a storyteller, a natural born performer, and a touch sensitive. The older he gets, the more I realize how much he is like me. How he is just like I was when I was a child.

I want to give him everything in the world he could ever want, but I don't want to spoil him.
I want to spend every moment playing with him, but I don't want to smother him.

I want him to have endless amounts of happy experiences, but I understand he needs to feel pain and disappointment, too.

I don't want to fuck this up. I don't want to fuck him up. Every decision I make, I hope is the right one. The best one for him. Sometimes I feel like I'm doing good. Other times, I just try my hardest, and hope he will grow up to see that.

Being a parent is a constant balancing act. Being firm and being fun.
It is a daily test of patience. You are pushed to your limits and wonder how you can possibly make it to bedtime without losing your damn mind. But then, you do. And the next day is better, or filled with different challenges.

There is laughter, there are tears. Every single cliche you've ever heard, and then some.
I find myself scooping him up in my arms and wishing the moment could last forever; looking down at him giggling at me and asking me to "kiss me so hard". I want to bottle that moment up, but he's already running away to grab his cars or build a Lego tower.

Happy Mother's Day to all of my mommy friends. I'll be cheering you on through every victory, and consoling you through every defeat. There will be many. But just know that you are loved, and we are doing the best we can.




Sneaking in a photo during yesterday's snuggle time ;)

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.

Jonas the Great Communicator

Having a conversation with a toddler is sometimes confusing, but always entertaining.
It goes without saying that I like to talk. It stands to reason I'd bring a child into this world that talks as much as his mommy.

The most interesting thing to me is observing how he chooses to communicate, and watching his memory develop and improve. He'll say things to me that are seemingly out of the blue, but he's probably been gathering the information for days.


Earlier this week, we were walking from the car to the house. Jonas turns to me and says: "Mommy, Curious George with the butterflies". A week ago, we went to the butterfly garden at Secret Woods in Fort Lauderdale. It was only after we'd gotten back home that I realized we'd lost old George in the garden. I could picture him sitting on the bench, all alone. I explained to Jonas that Curious George stayed to play with the butterflies. Little did I know it would stick with Jonas, resulting in him talking to me about it a week later.

Last night, Jonas decided to sing everything he was speaking. On a talkative drive home, he started by singing about Luis being at work. (One of his favorite Jonas Originals, second only to Dinosaur, Dinosaur). "LU-IS at worrrr-rrrrk" he sang, before switching gears to: "Mommy ha-home, mommy go home. Cooby Doooooooo, dark outsiiiiiiide...go playground laterrrr. Go playground sooo-oooon"

I'm sharing this with you, because as I am experiencing this stage of a child's development for the first time, I am absolutely fascinated with a toddler's train of thought. It's something akin to stream of consciousness. Whatever is on Jonas's mind, he just blurts out loud.

Being a parent is like getting an education in real time. The way our minds work, why we behave and react to things in a certain way, and how we process information.
I am learning the best way to teach and communicate with Jonas, just as he is learning the best way to communicate with me.

What an awesome experience.

Easy goin', We'll Laugh Our Cares Away...

Last year, on one of my mom's random visits to South Florida to spend time with her grandson, she brought Jonas a copy of Follow That Bird. If you're a child of the 80s like me, you remember this tale of Big Bird and his cross country journey of family and acceptance. Jonas immediately fell in love with the movie, and (like any good toddler that's fond of a routine) wanted to watch it on a loop.

Fast forward several months, and we're on a car ride. I could hear him singing in the backseat, so I turned down the radio to hear if he was just chatting to the song. Much to my surprise, I hear him singing one of the songs from the movie: "Eaaasy goin'. Laugh...cares...way. Easy goin' day".

What a fitting and appropriate song to be one of the first he learns. Jonas's life may have started far from "easy goin'", but strangers and friends alike often remark on what a happy child he is.

I try my hardest to remain positive, especially when it comes to Jonas's health. He recently had a bi-annual check up with the cardiologist, and the weeks leading up to it were absolute torture for me. Jonas is not "sick" by any stretch of the imagination. But he does need one more surgery to complete the re-routing of blood flow from his heart to the rest of his body. Many kids with Hypoplastic Left Heart Syndrome have the final surgery, called the Fontan, as young as age 2. I was dreading Dr. Flores would at least want to schedule him for a catheterization, to see how his function was holding up.

I am ecstatic to report I was just being a worrisome mommy. Dr. Flores assured me that Jonas was extremely healthy, and she wanted to wait until he was 4 years old to schedule the last surgery, as long as he remained in good health. Jonas climbed up into the chair next to me in her office, and she remarked: "Look at how fast he climbs! I know heart healthy children that aren't as fast as he is!"

This visit was exactly what I needed to calm my fears. I know the final surgery is inevitable, but to hear Jonas is doing so well is reassuring. Jonas has endless amount of energy. He is a daredevil risk taking toddler, with not a care in the world...which is exactly as it should be.

I am just so afraid at times. I guess this is normal for all parents, to be (sometimes obsessively) concerned about their child's health and safety. I try not to get ahead of myself. It's important to take this one day at a time, because looking into the future is stressful and frightening.

For now, today, Jonas will laugh and play. He'll tell me stories about the cats, request his favorite albums (Weezer's Green album and Joel DaSilva and the Midnight Howl) and get a quarter of the way through the alphabet, not realizing his skips the letter "E".

I just have to remind myself to live in the moment, and enjoy each precious hug and kiss from the sweetest boy I know.

If I'm Rubber, Then You're Glue

Jonas is 2. If you aren't a parent, I'm not sure how much you remember about being 2, but I'm discovering it means you like to climb and jump on EVERYTHING. Jonas started climbing a lot well over a year ago. My solution to this was to take him to the playground as much as possible, sometimes 2-3 times per week.

Yesterday, I went to work at 5:00a.m. like usual. My game plan was to take him to the playground as soon as I got home. Unfortunately, Jonas had other plans. Around 8:00, I get a frantic phone call that he'd fallen flat on his face. Best we could tell, he'd launched himself off the changing table. We had to go to the pediatrician, who wrote him a script for an x-ray, to make sure he hadn't fractured any bones in his face.


I'm a pretty decent problem solver, so my first instinct was to take out the changing table. Problem solved, right? Not so easily, unfortunately. Boy has decided this is his "jumping" phase. Today he's been jumping on his bed instead. Of course I'm going to tell him no. Tell him he could get hurt. But at some point he'll be in his bedroom alone. I can't hover over him every second of the day and night. I also don't want to put his mattress on the floor, it looks like hell.

Meanwhile, my point of writing this blog: I received a phone call from our pediatrician last night with our x-ray results. I should preface this rant by saying I love our pediatrician. She's always wonderful with Jonas, has been from the start. She told me she couldn't see any major fractures, but could not rule out the possibility of a hairline. The tissue in his face was too swollen to tell. She then gave me some helpful instructions, like watching to make sure his behavior doesn't change, waking him periodically to make sure he isn't concussed, etc.

Then, she said this: "I'd like him to be more careful in terms of play. He's taken one too many hits lately. (He fell on Saturday while playing with his buddy Terra. Same thing, climbing) I know he wants to act like a normal kid, but he's not."

At the time, I didn't fully process what she was saying. I understood what she meant: He's a heart baby. The goal is to keep him healthy. But I sat on it last night, and thought about it more today.

YES, he's a heart patient. Of course we need to keep an eye on him. But he's not breakable. I absolutely REFUSE to treat him any differently than I would if he had a whole heart. It's bad enough that he will have limitations later in life that I will have no control over. It is imperative to his development that he not be held back in any way. He is a tough kid, no doubt about it. When he took that hit yesterday, of course he cried. He's 2. I would've cried, and I'm 30. But he got over it so quickly, he was laughing and dancing a couple of hours later like nothing had happened. Why would I rob him of that?

So for now, I'm going to let him be a kid. Jonas will fall, and I guarantee he'll pick himself right back up again. I'm not going to baby or coddle him. I hope he will thank me one day.

Heart moms: Have you been in a similar situation? How did you handle it?

Parenting Style

I don't generally use this blog as a platform to discuss how I raise Jonas, but as he becomes more of a "little person" and less of a baby, I've been thinking a lot about parenting style and discipline. What good is a blog if you can't ruminate "out loud"?

Jonas is a very assertive toddler. He's also a great communicator, especially for someone that is still learning how to properly put words together. This makes it a lot easier for me to talk things out with him when he gets frustrated. The greatest gift my mother gave me in raising me was to speak to me on a simplified version of an adult level. I speak to Jonas just as I would a friend, co-worker, or contemporary...just a little more basic.

Last night, he was refusing to take his medicine. We've never had this problem, as it is part of his routine from birth. In hindsight, I know he was just overtired, but it was extremely frustrating. After several attempts at calmly explaining why it was important, chasing him down, etc.; I finally just scooped him up in my arms and sneaked it in his mouth. I felt terrible. If I had just been patient and given him a minute to calm down, I'm sure he would've complied. Moments like this are a struggle. Of course he needs to know who's in charge. I am the parent, the one he looks to for approval and guidance. I know I need to be firm but fair. Every experience with him is a lesson in treating him with kindness and respect, without becoming a pushover myself.

Things I try to remember/enforce with Jonas:

~I'll NEVER, EVER strike him under any circumstances. He is not an animal or a piece of garbage. He is my child, a human being with feelings. Furthermore, he is a human being that is not capable of rationalizing right from wrong. He is still learning. We
all make mistakes. Being punished for hitting a speed bump on the path to doing the right thing makes no sense.

~I will try my best not to raise my voice. On days he tests my patience, I try to remind myself that he hasn't had the life experiences of an adult. He is a very easygoing child with a happy disposition. He will inevitably do something I don't like, but it is my job to correct him patiently, with a level head.

~Speaking of patience, I will allow him extra time and space to explore. If this means leaving the house 10 minutes early to let him stroll to the car, stopping to say hello to every lizard and squirrel, so be it. From his perspective, everything is new. He hasn't traveled the same path for years, he is taking in his surroundings. It's not defiance, it's the gathering of knowledge and information.

~I will not hover over his every move. As long as I am at a safe distance where he can be monitored in case of emergency, he'll be just fine. Holding his hand through every move in life now sets a precedent for hand-holding as an adult. He will ask for my help when he gets stuck. Allowing him to safely explore his independence will make him more well-rounded later in life.

~No matter what, I will always support him. No one leads a perfect life. Life is a messy thing, and we stumble at times. If I do the best job I can raising him, he will make good choices. Whether he decides to become a cello player, zoo keeper, fireman, or restaurant manager...he will have my blessing 110%. As long as he is working toward his goals and making the life for himself that he desires, that is all I can ask for.

These are just a few things. Every day Jonas teaches me as much as I teach him.
If you're a parent, I'm sure you can relate. What has being a parent taught you?

Turning 2

I started this blog as a way to chronicle Jonas's journey with Hypoplastic Left Heart Syndrome. I wanted to share his story, especially while all of the details were fresh. I wanted him to be able to read this when he's older, and understand how everything came to pass.

I am pleased to report that I don't need to post here often, because Jonas is just a regular little boy that happens to have a heart that's wired a little differently than most. He runs and plays, he laughs and cries, he talks. Oh, does he ever TALK!

In the weeks leading up to his second birthday, he has become increasingly stubborn and independent. Those terrible two's are creeping up, and I wasn't expecting such a transformation! My sweet little ray of sunshine is now showing me he is his own person: a toddler force not to be reckoned with! So I try to give him his space, and lovingly guide him the best I can without getting too frustrated.

Every moment we spend together, I'm walking the line between smothering him with affection and turning him loose into the world, where I can watch him safely from a distance.

Jonas is the strongest person I know. Stronger than even me, because he has yet to be jaded by the world. His positivity is never manufactured. He is real and true.
Jonas knows survival and persistence, and he has enough of each of those for ten kids his age.

I am thankful that Jonas's CHD is an afterthought. Bi-annual visits to the cardiologist, medicine every day, but we live an otherwise routine life.
Sometime between now and the time he starts Kindergarten, we'll be talking Fontan surgery. But why get ahead of ourselves? When you have a toddler, you take things day by day, because their moods change like the weather on a Floridian afternoon.

Happy Birthday, baby boy. Thank you for being the light of my life. You're my inspiration to work harder, be a better person, and not take even a moment of life for granted.

I LOVE YOU!

...And Now for Something Completely Normal...

No one warns you, but being a parent will break your heart. When you least expect it, you'll be alone with your thoughts and suddenly realize how rapidly time is moving. Your baby won't be a baby forever. I know this statement seems rather obvious, but you're not thinking about your boy turning 18, 21, or 30 when you're picking him up off the ground from a show of independence in the middle of the hallway at your condo building. You're firmly in the here and now, as you should be, trying to hustle him to the elevator and to the car. I try to leave early enough so he has time to pick up a rock, step in a puddle, or touch every plant on the way to the car. I love to watch him explore. Some days I can't see past tomorrow. I can't imagine him any bigger than he is in this moment.
Other days I'm thinking about him learning to play an instrument or heading off to school. These things are years away. This is what it's like to be a parent.
Heart bursting joy mixed with wistful nostalgia and anticipation of a (not so?) distant future.
Today, I was teaching Jonas how to freefall onto the bed. With every fall, he would laugh a little harder at me. Before I knew it, he was being the perfect toddler copycat. In the back on my mind, I was filing the moment away, clinging tightly onto it as tightly as I was hugging him to my chest.
We have to grow, we have to age, and we have to keep moving. I'm just trying to do the best I can to make sure I don't take the little things for granted.