Gearing Up for the Long Haul

Tyson has avoided another appointment with the scalpel.

I’d like to rack it up as another round for his corner, but this one is more like a draw.

He’s come home with a feeding tube and we are force-feeding him every three hours in an attempt to get him to gain weight and get stronger so we can get him to that operation he needs. Since that operation is scheduled for some time around the 6-month-old mark, we will likely feed him through the tube for another five months.

It is incredibly ironic to me that a son of mine is having a problem gaining weight. I can look at a pizza and put on two pounds.

But his heart works extremely hard. You can literally see it pounding at his chest. Eating dinner is like running a marathon. Sitting still is even difficult. Like his dad, he sweats watching television.

Combine his overworked heart with the terrible acid reflux/colic he has – which makes him not want to eat – and you have a troublesome situation that could lead to weight loss, not weight gain.  

We thought Sydney’s gas issues were distressing; Tyson has taken it ten levels higher. If the poor boy is awake for three hours, he is in pain or uncomfortable for two hours and 45 minutes. Writhing pain. I live for those 15 minutes where he is comfortable and both he and I can relax.

I have determined he is really only comfortable with me in one position – sitting straight up with my hands underneath his arms. He can sit on my belly like this, and occasionally I can bounce him. The problem is, my shoulders get tired after about 15 minutes, and he wants me to do it for three hours. I may look like a young Arnold Schwarzenegger when this is all over.

Between the pain and his heart working overtime, he gets exhausted quickly and sleeps a lot. I like when he sleeps because it gives us both a break, but I feel guilty because I am not sure he is getting the developmental stimulation he needs.

He really is a cute kid. Who knows what he would be like in a normal situation. I’d love to see him smile. I can’t wait for us to have a normal father-son relationship.

Until then, we persevere.  

The feeding tube is not as bad as it sounds. It goes through his nose down into his stomach. We attempt to feed him the prescribed amount from the bottle first and whatever he doesn’t eat gets put in through the tube.

The tube is helpful because he really isn’t eating right now. We aren’t sure if it is the acid reflux/colic, or if it is because he is never hungry. If your belly is being filled up every three hours, it is unlikely you’re ever going to be hungry. Unless you are me, of course.

But it is working. He gained 50 grams in two days. Don't ask me how much that really is. Thirty-five years after I learned the metric system in school because we were on the verge of conversion, we still are arrogantly telling the rest of the world to stuff their kilograms and meters where the sun don't shine.

It is exhausting to feed every three hours. Think about it: midnight, 3 a.m., 6 a.m., 9 a.m., noon, 3 p.m., 6 p.m. 9 p.m. One of us doesn’t go to bed until after that midnight feed, then the other takes the 3 a.m. Then one has to take the 6 a.m.

There’s a process to these feedings. Push air in to make sure the tube is in the right spot. Pour the milk in the tube and let it slowly drain down. Then clean the tube by flushing it with water.

Each feed takes about a half hour to 45 minutes. That means you have 2 ½ hours max until the next feeding. You better get your sleep on quickly. If you are like me and have trouble falling asleep once you wake, you are in trouble. Several times, I have not been able to fall asleep until about an hour before I need to wake for the next feeding.

My wife could sleep through a pack of howling hound dogs treeing a raccoon underneath our bedroom window. If a hurricane hit the house – as long as it wasn’t Hurricane Sydney or Hurricane Tyson – I’m pretty sure she’d fail to raise an eyelid as the house swirled away.

Of course, she denies this. This leads to conversations such as this:

Me: I just can’t get to sleep after I wake up. I am going on about three hours  of sleep a night.

Brooke: I know what you are saying honey, I have….zzzzzzzz.

Or :

Me: My life is a mess. I am not sure how we are going to do this for five months. We’ll never sleep.

Brooke: We just have to work out a plan that ….zzzzzzzz.

The truth is, I envy her. I have always had sleep issues, but they have gotten worse over the past two years – coinciding with the arrival of Sydney, I guess. Kids put the pressure on, right? I often have trouble falling asleep to start the night and, once I wake up, I’m going to run every aspect of my life through my head in an attempt to solve all my problems before I doze off again.

We will keep plugging away. I’m extremely happy Tyson does not have to go under the knife – at this point – just to get him healthy enough to go under the knife again. If he can fight like he is doing, mommy and daddy can do six months of sleepless nights.

At least I get the break of work. Brooke not only has to deal with Tyson during the day, but she has a rambunctious Sydney wrecking the house. My life is tough; hers is tougher.

We are discussing our options to figure out the best way to attack this. Tyson won’t be able to do child care in this condition. We’re considering everything from calling in the troops (family) to professional help to job alterations for mom and dad. We’ll find a groove.

Every good fighter needs a strong team in his corner.