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.