Focusing on a New Battle

 

 



 

 

I’ve had more than a few people ask for an update on Tyson, so here it is.

His heart seems to be ok. There haven't been any red flags to this point. The small tear that didn’t completely patch is being monitored and they think it will eventually fix itself.

I don’t want to be overly dramatic. This is not a miracle. But it is a tremendous outcome. We are blessed to have come this far. If I wasn't so bashful, I'd do a thank-you dance in the middle of Cincinnati's Fountain Square, that's how happy we are. 

But there is still a big obstacle to overcome.

First, the good news. His demeanor is better. He smiles a lot more and engages in a little back-and-forth cooing with his mom and dad every now and then. I absolutely LOVE to see him smile and when he is in one of these moods I stop everything I am doing and engage him.

It is so nice that his tiny body doesn’t have to work as hard anymore. He used to be constantly exhausted, as well as writhing in pain. You can now see the potential for him to be a “normal” baby and he has several times a day when he is actually a pretty happy kid.

But not all is well. I’d say that where he was a 10 on the scale of cranky babies pre-surgery, he is probably now a 7. He still has a lot of stomach issues. While the doctors told us to expect this with heart babies, we are still a bit unclear on the connection between his heart problems and his stomach issues and wonder if something else is at play. 

He simply doesn’t like to eat. I believe it causes him pain. He gets extremely gassy and it is very painful, so he doesn’t want to put himself through that experience.

This is how bad it is: after we try to feed him everything we can via bottle, we then have to pour the rest down his tube. When you hook the syringe up to the tube, you sometimes can hear gas bubble up through the tube and watch it come to the surface of the milk in the syringe. On really bad days, when he gets particularly cranky, he can force the whole syringe-full of milk he just drank out of his belly and back into the syringe.

Poor kid. We have talked to doctors and tried different fixes, but nothing is working.

As a result, he is only getting about half of the food they want him to take in a day, and he only takes about half of that voluntarily. We are slowly adding more – 5 milliliters per feed every week – in hopes of getting him up to what a normal kid eats.

Brooke and I hate the tube. Not only is it a burden on us – we feed him eight times a day (every three hours), and each feed takes about 45 minutes – but he seems to really dislike it and we wonder if it is a reason he DOESN’T eat. Filling his belly constantly also leads to a couple of throw ups each day.

The docs don’t seem to mind. Their only concern is getting the food into him. He has fallen off the growth charts and they want him to get his calories up. Whether he is miserable doesn’t matter.

So, we plug away.

I wouldn’t mind waking up every three hours in the middle of the night if we knew it was helping, but I am not so sure it is. The irony for us is we have a baby who would completely sleep through the night, but we have to feed him every three hours. Meanwhile, our 23-month-old still parties like a rock star throughout the night.

If we can’t fix this problem with the feeding tube that runs through his nose, they will eventually put one directly into his stomach. We certainly don’t want that. You can bet we are doing everything in our power to turn this around.

Caring for him is especially challenging now that Brooke is back to work. As you can tell from my previous descriptions, you spend nearly a third of a whole day just feeding him. We’ll soon add therapy sessions to catch him up developmentally. And, of course, he still has numerous doctor and cardiology visits.

We are working on some things to put a system in place where he has the right people to ensure he gets everything he needs and I’ll have more on that in a later post.

To all who have sent prayers and good thoughts his way – the key message from this post is that they worked. He is on the right path and we have every reason to believe he will come out of this A-OK.

But don’t completely forget him. He still has a tough piece of road to travel and your support means the world to us. Someday he is going to understand he made it through on the strength of his community’s shoulders.

Life Knocks You on Your Ass

My son won’t have a normal start to life.

Minutes after leaving the womb, he’ll be whisked away to a waiting ambulance that will transport his tiny, fragile body several blocks away to one of the best children’s hospitals in the world. A spot in the Neonatal Intensive Care Unit will be waiting.

There is a 70 percent chance he will need surgery immediately. There is a 100 percent chance he will need a second surgery within months.

And that is the best we can hope for.

I still am not to the point where I can say or write this without tears welling up.

I won’t glaze your eyes with the medical jargon that even I don’t understand. He is among the one percent of children who are born with heart defects. In fact, the odds are much smaller than one percent on some his defects: hole in his heart, two valves coming from the same spot and performing the same function, and narrowed arteries in two places.

My son is broken.

I ache for him to be fixed.

Doctors say it is possible. The surgery that is likely upon the day he arrives in this world can fix the narrowed artery at the top of his heart. The second surgery, which will definitely take place, will fix the hole and the two valves.

The other narrowing, which they are monitoring, may not be fixable. Brooke and I heard different things from the doctor. We were both so stunned at the news, I’m not sure either of us heard anything completely right. Brooke thinks it is fixable. This is one argument I hope she wins.

What I know for certain is he will spend many days in the hospital and undergo at least one open-heart surgery. More days in the hospital to recover, and possible follow-up surgeries. Then he will spend the rest of his life being monitored by a cardiologist.

But, if everything goes right, if the fixes take and the other narrowed artery heals, he could be a fairly normal kid.

I’ll take it. I’d love if he is able to play competitive sports and run freely, without a care, with his dog and neighborhood friends.

But mostly, I want him to be alive and healthy enough to have a decent quality of life.

I was angry when we got the news. I’ve spent many days since telling myself what a good life I have.

I grew up poor, but loved. And being poor was a positive. It sharpened me, made me a fighter. I would not be the person I am, or achieved what I have, without that foundation.

I had more fun in my 20s and 30s than the law should permit. In my 40s, I met and married a beautiful woman with a heart so tender saints move aside for her. Seventeen months ago, I was blessed with the best thing to ever happen to me, a beautiful daughter who is smarter than her age and as fun-loving as they come.

No one I have ever been close to has been murdered or died tragically young.  I’ve lost grandparents to debilitating diseases, but only after they’d lived long lives and showered me with love. I lost my dad to leukemia, but I had him with me into his 60s.

As a poker player, I understand skill is trumped by luck. Sometimes the odds are against you. This is simply my time for bad luck. I’ve had my good streak; now I have a challenge to overcome.

Or it could be karma. Lord knows I have done enough bad things and hurt more than a few people in my life.

But what about my wife, a special education teacher who takes care of the world’s most vulnerable? A selfless woman who lifts up everyone around her?

She doesn’t deserve this bullshit.

Neither does my innocent little son, who will be only minutes into this world when faced with life-or-death situations.

Fuck you, karma.

I don’t know if I am a good dad. I try my best, but without my wife to prop me up, I’d probably be lost. I’m better than my dad, but I am nowhere near the super dads I know, like my brother or a stay-at-home friend, Rory Glynn.  

But I know I am a LOVING dad. If love were water, a titanic swell would swallow Sydney daily.

If love can get us through, that little boy has a really good chance.

I’m glad Sydney is not old enough to know what is going on. A time that should be joyous and full of anticipation has turned to depression and nervousness.

I’m not an optimist or a pessimist. I am a realist. That means I study the situation, understand the odds and outcomes, hope for the best and prepare for the worst.

We all know what the worst is here. I’ll be prepared.

My wife is another story. Being prepared is cheating on the notion that our little boy will be anything but fine. Mothers don’t cheat their kids.

I’m worried about her. Her heart will break when they whisk that boy blocks away to Cincinnati Children’s Hospital Medical Center. She has to stay behind for three days, recovering from a C-section. She won’t be there for that first surgery, if needed. Normal breast feeding and bonding will be difficult.

There will be two people in this family with broken hearts.

No, make that three.