Surgery Set

                                                          Tyson in a good moment!


Cincinnati Children's Hospital Medical Center has moved up Tyson's open-heart surgery. He is now set for Monday morning.

The bad news is he is showing signs of heart failure and his growth has fallen off the charts. They call it "failure to thrive."

The good news is the surgeon is confident he can fix my boy and get him on a better path.

For all my belly aching about appointment changes, when I did talk to him, he was very nice, professional and assuring. He said he has done several of these types of surgeries and he feels like this will be a success.

Dr. Roosevelt Bryant is new to Cincinnati. He was recruited here out of Minneapolis. He has a great resume, so I am hopeful. My boy's life is in his hands.

The surgery will be 5 to 6 hours with Tyson on a heart-lung machine for about half of that. Recovery will be a week or two, if everything goes well. Follow up surgeries are possible, but he said not a definite.

He'll likely still be on the high-calorie formula and fed through a tube for awhile. I am going to talk that over with the nutritionist. They need to understand this food is really tearing up his belly and making him uncontrollably cranky.

But, of course, we will do whatever necessary to get him healthy.

I'll try to post some things on Facebook as Monday progresses. If you think about it that day, send a good thought Tyson's way.

  

Cupcakes 24-7

 

 

 

Do you ever see habits developing in your child and wonder where they come from and whether they will continue?

My daughter is not even 2 years old and she already has a sweet tooth. Can a person be born with a sweet tooth? Is it biological? Blonde hair, blue eyes and an addiction to chocolate?

Is it inherited? I don’t eat a lot of sweets, but I am pretty sure my wife would put chocolate dressing on her salad if it existed.

My daughter’s main passion right now is cupcakes. If you have read this blog, you know she is a night owl who does not sleep if she can avoid it. One night last week, after we put her to bed, she sat in her bed and talked to herself for about an hour. She does this often. Thank God for the baby monitor. Some of my greatest joys come from listening to her conversations with herself before she goes to sleep and after she wakes. I can’t make out everything she says, but what I do understand gives me great insight into what is running through her little mind.

On this particular evening, it was cupcakes. For more than an hour, I listened to her say the word “cupcake” repeatedly. Sometimes it was simply, “cupcake?” like she was asking a question.   Other times, it was a demand: “CUPCAKE!” Still other times there was a little whine to it…”cuuuuupcaaaaaake.”

What became clear between maybe the seventh time and the 49^th time she said the word was that the girl wanted a cupcake.

Now I’m no father of the year, but I know better than to put a cupcake in the crib at 11 p.m. But her intensity did make me wonder, did she get enough to eat that day?

My philosophy on feeding is that kids will eat when they are hungry. If they don’t eat, they aren’t hungry. It is kind of basic instinct. Stick a decent meal in front of them. If they eat, beautiful. If not, heat it up for breakfast the next morning.

But as I listened to my daughter whine in hunger, I wondered if I had failed to feed her enough that day. Our son was in the hospital and my wife was staying with him, so daddy was in charge. Had he flunked a basic daddy duty?

So I tiptoed to her door, cracked it open and whispered “Sydney, would you like a hot dog?”

“NO! CUPCAKE!” She said this with the force of Al Pacino’s HOO-AHs in Scent of a Woman.

Relieved, I realized she wasn’t hungry, she just wanted to satisfy her sweet tooth. We face this struggle every day. She’ll take a couple of cursory bites of her meal, pronounce that she is “ALL DONE” – or worse, throw her plate on the floor – and then 15 minutes later ask for a cookie. Or a cupcake. Or ice cream.

You’d think we give our child a lot of sweets. I promise you, we don’t. She gets a couple of fig newtons a day and a miniature cupcake every other day or so. She gets ice cream on special occasions.

Is this a lot?

She drinks only water and milk. None of those sugary drinks that can kill you by age 5. We don’t even give her juice. We recently introduced chocolate pudding, but it was sugar-free.

She’s frenetic enough naturally. I’m not about to subject myself to a sugar frenzy. My house would be Romper Room on crack.

Where does she get this and will it continue? Can I play a part and stop it? Should I stop giving sweets altogether? Or is it harmless? I don’t know too many adult women who are not sweet addicts, so maybe it is a natural gender thing that cannot be denied.

If that is her only addiction, she’ll be fine, right? Dad shouldn’t be such a doomsayer.

But that is what I do. The other day I got a bit of a scare when I projected a current behavior into the future. She has taken to carrying my toothpaste around with her. I have no idea why this is the object of her fascination, but anytime she gets within a couple feet of my bathroom, she grabs the toothpaste, sans cap.

She then proceeds to march around the house with it in her hand. She hasn’t quite figured out that she can squeeze it hard and send it flying all over the kitchen cabinets, but she does like to periodically lick the top of the tube to get a little toothpaste in her mouth.

I imagine she does this because the minty taste makes her tongue tingle. But then I thought, what if this gives her some type of high? Is she training herself to get an instantaneous jolt from a foreign substance? Is this only a step away from huffing?

Then I smacked myself in the head and said, “She’s a FREAKING KID who likes toothpaste. RELAX.”

I realize how ridiculous it is. But my job is to protect her and guide her to a happy life. I take that seriously, whether I am heading off a meth addiction, ensuring she doesn’t balloon to 500 pounds on an all-cupcake diet or hiding the toothpaste so she doesn’t become the only child in her school with a mint addiction.

(After writing that last sentence, I Googled “mint addiction.” It really does exist!!! Listen to what this guy says: “It gives a distinct sensation in your mouth which makes it addicting more in the way that marijuana is addictive, rather in the way that alcohol is. The sugar intake you are experiencing is why you are suffering from postural hypotension. The high levels of sugar, at first, most likely gave you energy. Now your body has probably adapted to the volume of sugar and expects to receive that amount and/or more.” HOLY COW! The toothpaste is going out of reach in the medicine cabinet.)

So allow me to be a little paranoid. It’s my job. I will study my daughter like a science book, trying to determine where her little nuances and proclivities come from, whether or not they could turn into bad habits down the road and how I might nip them in the bud without sending her into one of her Terrible Two tirades.

If that sounds like a lot of work, it is. I’m going to need a jolt of energy. Anyone have a cupcake?

A Big Thank You to Everyone

Tyson’s surgery has been set for July 25.

I hope he can make it.

We meet with the surgeon Wednesday and I might push them to move it up. He’s getting worse. Fluid is building in his lungs and it is very hard for him to breathe. The high-calorie formula they have him on is really upsetting his stomach and he throws up a lot and is in constant pain.

We just aren’t skilled enough to know if this is heart failure or just some other struggle. What I do know is he is worse off than he’s been since he came home.

This whole thing has me severely depressed.  

That’s not somewhere I want to be for very long.

My wife and I are blessed. We remind each other of that often. Mom, dad, daughter, son. Perfect family.

We have jobs that pay us well. We have a roof over our head and food on our table. Rarely do we have to say no if we want something.

Our life is good.

But we have really realized our blessings over the past few months as family and friends have rallied to our side. The love and support that has circled us has been amazing.

So we would like to say thank you. We can’t name everyone, but please know that all of you are captured in this post in some way.

Our families have been awesome. My brother, Rich, has made it financially possible for my mother to quit work and be down here when needed. She has probably been down here half of Tyson’s short life. Any time we need her, she hops in her car. She’s always been my rock.

Brooke’s mom and dad came for the birth and her mom took extra time off work to stay through his initial hospital stay and help us. They also are caring for our more rambunctious dog, Murphy. It is wonderful to have their support.

My sister, Brooke’s brother, our cousins, aunts, uncles, grandparents and more have called, written, sent gifts and cards in support of Tyson. We love you all.  

Friends have stepped up, too. Libby Hilton has been simply amazing, becoming our emergency babysitter whenever we need it. We don’t have family in this area, so, whenever an emergency arises – such as a trip to the emergency room -- we wonder whom to turn to. Libby is always quick to answer the call.

Amber Dockery, our child care provider, has been extremely flexible with Sydney and helped feed us when we were too tired to cook. She even rallied some of the other good-hearted parents to our aid with a wonderful gift basket. One parent, Shannon Grote, made us enough chicken tortilla soup for a week!

My friend Fred Reeder, who united Brooke and I in holy matrimony, has continuously offered assistance, and his wife, Jennie, made us a couple great meals that helped us through a trying week. These two have always been a tremendous support to us and are good at getting our minds off of things for awhile.

Nina McEwan, one of my wife’s good friends, has been a shoulder for Brooke to lean on and has signed us up for some sort of food exchange. I don’t really understand it, but apparently we’re getting free meals. I like meals and I like free.

We’ve had friends from Children’s Hospital – Tanya Leach, Jim Feuer, Tim Bonfield – reach out with offers to educate us on doctors and procedures, as well as make our time there more pleasant.

Some have helped without even knowing. Amanda Schwieterman, Paul Fresty, Vicky Snyder, Dan Criss, Meredith Bollini – they’ve all walked in our shoes and their children are thriving. Those examples keep our spirits up.  Brooke’s friend Kim Roeller even had her friend, Lee Larson, an adult who was born with heart defects, reach out to us and his words were encouraging.

Countless other people have made offers to help, especially to care for Sydney. The girl would have 100 new friends if we ever took them up on their offers. I can’t name all of you here, but know we really appreciate your kind hearts.

Hundreds – and I mean hundreds – of others have offered support through prayers, positive thoughts, gifts, cards, phone calls, Facebook posts and other forms. Again, I can’t name them all, but I have no doubt Tyson is doing as well as he is because of all the positive energy being sent his way.

We still have a long way to go, but we feel like we have an army behind us.

Thank you.    

Hoping Surgery is the Cure

 

 

Tyson is headed for surgery.

He’s not getting better and we’ve reached the point of last resort.

When his weekly cardiac check up showed no weight gain, the cardiologist looked at Brooke and said, “I think it is time to talk about surgery.”

Damn.

They’re presenting his case to the cardiac team on Tuesday and we should have something scheduled soon thereafter.

This is not the surgery to place a band on his artery and equalize blood flow. This is surgery to reconstruct his heart and fix his Double Outlet Right Ventricle, along with the other defects.

This is the operation he was to have at about six months, when he would be bigger and stronger. Doctors have determined his heart is working too hard and he won’t get bigger and stronger. Despite a high-calorie diet that calls for him to be force fed through a tube every three hours, he is not gaining weight.

The open-heart surgery, risky already, is riskier the smaller he is. We certainly hoped for him to gain weight so he would be in a better position to withstand the trauma.

That’s not to be.

Damn.

I’m depressed. This is not what I wanted for my son. I wanted him to have as much chance as possible and that meant delaying the surgery.

This is my little boy. This is life or death.  

But, I am a little relieved, too. Tyson has a miserable life. He struggles to eat, breathe and even stay awake. He pukes at least once and, most often, twice a day. If he’s not sleeping, he often is in some discomfort and pain.

Successful surgery could turn his life around.

I’m hoping for positive outcomes like this one: http://www.youtube.com/watch?feature=player_embedded&v=ersBIAjHM-w

That’s pretty amazing stuff. The shots of the open-heart surgery are incredible. It is pretty remarkable how close this family’s circumstances mirror ours, and the baby’s condition is similar to Tyson’s.

I pray we have the same results.

If you want to know specifically about Tyson’s condition, here are details from an earlier post: http://firsttimedadat45.blogspot.com/2013/03/talking-specifics-about-my-boys-heart.html

There will be a long road to recovery even if the surgery goes well, including the prospect of more operations and the weekly cardiac visits. I don’t know when he’ll hit the “normal” stage.

But that is where we ache for him to be. I have had trouble truly bonding with Tyson because his condition has made him constantly miserable and I’ve become so frustrated at my inability to do anything that makes him feel better.

I love this kid. I want life to be easier for him. I want to see him really smile for the first time.

One doctor told us he will be “a totally different baby” after the surgery.

Amen.

Sydney and Kanye: Two Peas in a Pod?

If it is sacrilegious to admit your children annoy you, then let the shouts of “Satan!” come my way.

I love my daughter more than anything on earth, but this new “Terrible Twos” phase she is apparently hitting early is putting her just a notch below Kanye West on the annoyance meter.

Here are a few things Sydney has taken to doing that I am certain are designed to entice me into child abuse and get me sent away so she can spend her days eating nothing but cupcakes:

Spitting out her food. Somehow, she has come to believe that if she is eating something and decides – mid-chew, mind you -- she doesn’t want it, she can simply spit it out. This could be in her high chair, or while she walks around the house.

This is obviously unacceptable. And I have told her so. Loudly. Over and over.

The other day she took a couple bites of an apple, slowly opened her mouth and nonchalantly let the contents drop to the floor.

My wife’s response to this was, “Well, you know, she doesn’t like the skin.”

“Oh, OK, I guess we’ll let her turn our living room into an apple orchard because she doesn’t like the skin. She doesn’t like being confined to our yard either, so maybe we should let her take her toys to the middle of the street and play.”

Chirp. Chirp.

That’s the sounds of crickets. Sarcasm doesn’t go over well in my house when the wife is the target.

Believe me, I am going to break Sydney of this habit or I will end up in the graveyard of failed parents, alongside Dina and Michael Lohan and whomever parented Amanda Bynes. Throw in those teen moms from MTV, too. We’ll have a hell of a party.  

The only saving grace on this one is we have dogs that follow her around and scoop up her remnants shortly after they hit the floor. They stalk her as a tiger does its prey. I think sometimes she does it just to see the dogs eat it.

Is my child the only one who does this?

Throwing her plate of food on the floor. For a while, we had her “trained” to say “all done” when she felt she had eaten enough. She’d often say this with great exuberance, “All Done!” and that was our cue to immediately clear her plate and get her out of the chair.

Now, she seems to have eschewed our agreed-upon signal for the distressing act of dumping her food on the floor. Where does one learn this? If you know me and my rather large physique, you know very little food ever gets dumped off my plate, so this cannot be something she is learning at home.

Again, thank God for the dogs. I never have to worry about carpet stains because they are on those stray morsels faster than Kim Kardashian scurrying to her next red carpet interview.

Nevertheless, this brazen act is similar to spitting out her food and does not go unpunished.

But I am just not sure a 22-month-old mind yet comprehends the whole concept of “right and wrong.” I’ll keep trying, because, at some point, either she’ll get it or my heart will explode in frustration and I’ll fade blissfully from this earth to a place where all children happily eat all the food on their plates – including their vegetables -- carry them to the sink on their own and hand wash them to spotlessness.

Totally ignoring me. The other day, I asked Sydney 15 times to look at me so I could show her something. She was playing no further than five feet away. Somehow, she managed to keep her back turned through all 15 pleadings.

This is a remarkable skill, when you think about it. This single-mindedness and ability to block out the world around you might lead to great things. I imagine this is how Stephen Hawking is when he is working on some serious physicist stuff.

It is also a growing trend. She regularly has a very nonchalant attitude when it comes to taking directions from others. Perhaps she is practicing for her teen years.

I can’t wait for those golden years when she essentially serves as dad’s gopher, fetching a newspaper or beer, or picking up things his 50-year-old body refuses to bend for. I still remember when I was about 8 and playing outside with my friends, hearing my dad call “Brian!” several times and running inside to see what he needed.

“Can you change the channel for me?” he asked. (This was before the days of remote control.)

Ahh, the rites of fatherhood. When do I get there with Sydney?

Until then, I’ll continue to repeat simple commands like, “It is time for bed, let’s go upstairs” and she’ll continue to stack her Legos, like daddy’s voice is a dog whistle her ears are not attuned to.

So those are my top three complaints as of now. It is important to note that this is a fluid process, and as we conquer one annoying habit, another soon pops up. If you ask me six months from now, this list will be different and, perhaps, quite longer.

Now, I could also do a post on all of the things that I adore about my daughter, from her recitation of the ABCs in order to get everyone to clap for her; to her getting excited and shouting a 25-word diatribe, of which only about five are actual words you can understand; to the ultimate daddy-loving symbol of affection, the “Daddy! Daddy! Daddy!” I get when she runs into my arms upon my arrival from work.

But that would bore you. Or seem like bragging. Or paint me as a nice guy.

Call me a guy who likes to go against the grain. Even if it is sacrilegious to the shrine of parenting.

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.