Monday, August 4, 2014

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

Thursday, May 29, 2014

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.

Wednesday, May 14, 2014

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.