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.

Back to the Hospital

Tyson is back in the hospital.

He’s really struggling.

They’re inserting a feeding tube in hopes of pushing more calories into him so he gains weight. Gaining weight is crucial. He has to gain weight and get stronger for a heart operation scheduled at around six months. If he does not gain weight, he faces a heart operation now just to get him to a point where his heart doesn’t work so hard, thereby making it easier to eat and allowing him to gain weight and get stronger for that second operation.

He’ll spend a few days in the hospital on the feeding tube and IV medicine. They will teach us how to work with the tube, which will be in him 24/7. If he gains weight in the next few days,  they’ll let him come home and we will be responsible for feeding and administering the tube should it become dislodged.

He’ll likely have the tube in until his operation – whether the first one becomes necessary or we make it to the second one.

If he does not gain weight in the next few days, he’ll probably go straight to the operation.

Heart Heart-breaking.

We had such high hopes when we were able to bring him home early – we felt like he was going to breeze through this battle. Far from it.  

He had a healthy appetite when he first came home, but he has gone downhill since then. We’ve determined he has acid reflux, which is leading to colic. This results in what seems like perpetual pain, especially between the hours of 9 p.m. and midnight. By the end of the day, you can literally hear the reflux starting in his stomach and making its way northward.

This is not uncommon in babies, but it is more common and more severe in babies with heart defects.

This poor boy’s life has been really, really tough so far. From needles and monitors in the NICU to constant stomach pain at home; he has had nothing but challenges. And the worst is yet to come.

I’m starting to lose my cool and get depressed all at the same time. The kid doesn’t deserve this bullshit.

I feel guilty because I sometimes get angry. He requires much attention and work. He constantly needs held and repeatedly repositioned because he can’t stay comfortable in one spot very long. He moves very similarly to a worm on a fish hook, desperately trying to find a spot where he can be comfortable. He cries and grunts throughout the day.

I don’t know if it is anger. Maybe it is just frustration. Or exhaustion. But my shortness with him is not right. He can’t help it.

He’s up into the night because being on his back is painful. They tell you when your child has reflux, keep them as upright as possible. My wife has taken to sleeping with him lying on her belly because that is more comfortable for him.

She’s a saint. Up with him all night and then dealing with Tyson and rambunctious Sydney all day.  Without a doubt, I hit the wife lottery and Sydney and Tyson hit the mom lottery.

Unfortunately, her love can’t work magic. The next few days are crucial. As repulsive to me as it is to have my son living with a feeding tube, I DO NOT want that surgery.

I’ll keep you updated when we know more.

Double the Trouble

 

 

Please someone tell me why I elected to have one child, let alone two?

This is what goes through your mind at 2 a.m. when the crying from the newborn has awakened the 21 month old who finally fell asleep at 11 p.m. after crying and talking in her bed for two hours. The same 21 month old who is allergic to sleep and, if awakened by her crying brother, is likely to be up for another two hours. Her carrying on will eventually wake her little brother… and the whole cycle will start over.

Woe. Is. Me.

Good thing I have a wife who is a teacher and has summers off. “Honey, can you deal with Tyson and Sydney and wake me in the morning?”

Yeah, right. The answer to that is likely to be a right hook that knocks me off the bed.

You want to know how life is in the Gregg household? Two kids. Two adults. Man-to-man defense.

I’m tired. Just tired.

And my wife is the one carrying the water. I suck at taking care of babies. I would rather watch Sydney by myself for a week than watch Tyson by myself for a day. I never know what is wrong with the kid. I can’t ever make him happy. I’m always afraid I’m hurting him, or smothering him or missing some sign that he might die in the next 15 minutes.

With Sydney, it’s like, “Here’s a toy, here’s the Sprout TV network, here’s a grilled cheese sandwich, there’s a gate on the stairs and the cabinets are locked down ….now let daddy play Words with Friends for three hours.”

Thank God for my wife. And I am not the only one who says that. I am pretty sure Tyson screams that in his little mind every time Brooke takes him from me because I have screwed up and sent him into a tizzy.  

Speaking of Sydney, she has not exactly welcomed her little brother with open arms. She still calls him baby. Occasionally, she will say brother. I don’t think she ever says Tyson.

The first time she saw him cry, she felt so bad she cried, too. But that sympathy didn’t last long. Ever since, when he cries, she laughs hysterically.

I’m clearly raising a budding sadist.

She hasn’t pushed him off the couch yet, but she hasn’t embraced him either. She, like Vegas the dog, mostly ignores him.  On the rare occasion when she does acknowledge his presence, she might go over to pat him on his head and show a little affection. But her pats are slaps, like when she pets the dog.

He’s too fragile to endure slaps upside the head.

She does like to bounce in his bouncing chair. The weight limit on it is 25 pounds. At her last doctor’s visit, she weighed 24. I’m thisclose to a broken bouncing chair.

Tyson is adjusting to his new world. He already sleeps better than his big sister. It is probably too early to make the call that he will be a good sleeper, but all signs point that way.

He LOVES to be held. I don’t know if it is the product of being in that hospital bed for two weeks and not being held, but, if he is awake, he wants to be in someone’s arms.

That can keep a person busy. Brooke is pretty adept at holding him while eating, or while using the other arm to play with Sydney. Surprisingly, I am not.  

He cries for three reasons:

·         He hates to get his diaper changed. Not sure if it is the cold air or he’s just too modest to be naked, but you can count on some screaming when you pull the tape on the diaper.

·         He is hungry. We all cry for food, right?

·         He has gas. And he has A LOT of gas. He doesn’t deal with it well and can’t seem to get comfortable. This necessitates me having to move him 100 different ways to keep him comfortable until the gas passes. Unlike Sydney, who was a farting machine, Tyson seems to hold a lot of gas inside. He gets the hiccups after every meal.

He also has a clogged tear duct that produces regular discharge from his eye. It has even crusted his eye shut a couple of times while he was sleeping. Imagine his terror when he can only open one eye! That’s his Indian nick name, One-Eye Tyson.

Poor kid can’t catch a break. A defective heart. Excess gas. Eye pus.

He actually has a myriad of issues that we can’t determine whether they are normal baby issues or because of his heart. He sweats, shudders, grunts and yawns a lot. One of the things they told us to look for was sweating, so we may be hyper sensitive to some of these things, but each has me concerned enough to ask the doctor.

Also, his lips blister. They look like the back of a boxed turtle. Is he dehydrated? He gets plenty of milk.

All of these questions shall be posed in the weekly cardiologist’s visit tomorrow.  

We know for sure we have had a bit of a set back with him. Doctors released him to come home with the understanding he would gain weight and be stronger for his operation. But, they warned, if he is not gaining weight, it will likely be because his heart is working too hard, which would necessitate his first heart operation, the one we thought we’d avoided.

Despite eating like a Sopranos character, he has lost a little weight since he’s been home. Now, Sydney also did when she first came home, and I understand many other babies do, too. But because of his condition, they have decided to supplement his breast milk to see if they can add on some pounds.

We’ll cross our fingers.

Other than that, life is normal. We’re living the dream. Well, actually, there is no dreaming in our house. No one ever gets to fall into that deep of a sleep.