Meet the New Boss, Same as the Old Boss

I’ll never be elected to the Fatherhood Hall of Fame.

I may look good on paper. I may say all the right things in this blog. But believe me, I have incredible shortcomings.

On a daily basis, my wife kicks my butt in parenting. There is no comparison. I am a Single A ballplayer and she is not only in the Major Leagues, she is all-star, Triple Crown winner Miguel Cabrera.

But I am smart enough to know parenting my two children will be the most important job I have in life.

That’s why I have made a very difficult career decision. I am leaving my job of only six months and returning to my old job, which provides far more flexibility to deal with Tyson’s medical issues.

Caring for Tyson has been more challenging than we thought. The main problem right now is he still must be fed through a tube, eight times a day, with each feed taking 30-45 minutes. This could go on for a few months. He has fallen off the growth charts and voluntarily eats only about a third of what he should in a normal day.

On top of that, he has numerous doctor’s visits. His regular cardiac appointments are sometimes three hours long, and we will soon add therapy sessions.

We’ve been lucky that my wife had the summer off from teaching, but, now that she has returned, those appointments will fall primarily on me.

As you can imagine, this is likely too much for a child care provider who might be caring for five other kids at the same time. Even our provider, the super Ms. Amber, might struggle with this assignment. So we had to come up with a plan to nurse him to normal.

We examined three options: my wife taking a year off work, hiring professional help and asking my mom for assistance.

If my wife took a year off work, it would hurt us financially and she would have no guarantee of getting her specific job back when she returned. Not a good option.

Hiring professional help would be expensive and mean leaving Tyson with a stranger. Not a good option.

Asking my mom for help would cost us some food and gas money and put Tyson in the care of someone who knows him and loves him. A good option.

My mom has agreed to this. She is an angel; I’ve counted on her all my life and she always comes through. My brother will play a huge part, too, making it financially possible for her to be away from her day job. He’s a hero in this story, too.

But my mom lives four hours away. It is a tough drive for a 64-year-old woman and then she has to care for an infant. We need to find ways to give her breaks. Plus, we really need a parent at these doctor’s appointments.

So I am going to fill the gaps.

My old job is 15 minutes from my house and 5 minutes from Children’s Hospital. I have four months of accumulated sick time there from rarely taking a sick day (they allow you to accumulate and roll over). I also am able to use sick time to deal with my child’s illness, something I do not have at my current job, which requires sick time only for the employee’s illness.

While my new employer has been super great regarding this whole Tyson thing and very flexible, I’ve only been here long enough to accumulate six days of sick time. And I am more than a half hour away from home and the hospital, adding more time away from work to those long doctor’s appointments.

When you add up the pros and cons, it is simply much easier for me to be a caregiver for Tyson while working the old job instead of the new job.

I liked working at CVG and will miss my colleagues. I’m burdened with a heavy heart to leave them in such a lurch, but sometimes you have to be selfish. Those who work closest with me understand.

I’m very lucky I am in a position to go back. JFS could have filled my position as soon as I left, but, somehow, it was still open at the time I came to the conclusion going back would be a good option for me.  Perhaps that is a little divine intervention.

It is an unexpected career detour, but it works. One, I always liked the job and the people I worked with, so I am not going back to a bad situation. Two, it is what my son needs from me now.

Like I said, I’ll never make the Fatherhood Hall of Fame. But I am sure as hell going to step to the plate when called upon.

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.

Sweden's Little Miracle

 

 

 

I went where no man should.

I entered a discussion on snot.

Why would I enter such mucousy waters?

Because I am passionate about the NoseFrida.

This small, simple, Swedish tool is a must have for any parent. It is the nemesis of snout snot.

So, when a pregnant Facebook friend – congrats Nicole! – posted a picture of a NoseFrida she received as a gift and asked if anyone actually used them, I waded into the mucousy waters with much trepidation and spoke up.

“You will discover it is one of the best gifts you've received.”

I’m not really a guy who is comfortable giving parenting advice to anyone. Despite two children under the age of 2, my parenting knowledge could fit into a six-ounce baby bottle. Thank God for my wife.

But on this topic, I couldn’t resist. I had to have my say.  

“It is the absolute best way to clear congestion.”

Needless to say, not everyone agreed with me. Among the jokes and expected responses of “Gross!” were comments such as this:

“So this mom of four....nope, never, wouldn't try it. I'm sure it's great for some...but not me!”

Many claimed that the blue bulbs you get at the hospital are the best way to win the booger battle.

I beg to differ.  

Ever since my wife saw Nancy O’Dell interview Christina Applegate – yeah, Kelly Bundy of Married with Children – the NoseFrida has been a positive part of our life.

Nancy: What is the best piece of parenting advice that anybody has given you?
Christina: There's so much [baby gear] to get! I think... to buy a NoseFrida!

Nancy: What is that?
Christina: The thing that you use to suck the stuff out of their nose. It's called a NoseFrida. It's got a long [tube] and you do it with your mouth.

Nancy: You do it with your mouth?! [laughs] I just used the hand-squeeze nose suctioner.
Christina: Well, there's a stopper. It doesn't go in your mouth. But it's so much more effective. I mean I always had that thing [squeeze suctioner] in there trying to get it out, and it never worked. But this one is magic!

Sydney had a lot of colds when she was younger. She was always congested. We, too, used the blue ball. Until my wife saw the interview with Kelly Bundy.

I must admit, I was grossed out and afraid. But it was worth a try.

The NoseFrida is a long suctioning tube with a disposable filter. You place the tube against the child’s nostril and create a seal. Then you use the mouthpiece to suck out the snot!!!

Yeah, it sounds gross. But the snot never gets to your lips. It is blocked by the filter.

This nifty little invention was created by a Swedish doctor and is 100 percent hygienic. It is worlds better than the blue bulb. The kids don’t like it for the few seconds you suck – they don’t like the blue bulbs, either – but once you are out of their nostrils, they have immediate relief.

Why is it better? Well, here’s what it says on the NoseFrida site:

“NoseFrida is non-invasive – instead of going inside the nose like the bulb, it forms a seal with the outside of the baby’s nostril (creating a vacuum). Parent-powered (mouth) suction is much stronger and more effective than the static suction of the bulb or battery-powered aspirators. NoseFrida is also easy to clean.”

My friend Nicole wondered if she could suck too hard and hurt her baby. According to the web site: “No. NoseFrida is safe to use on newborns and preemies. There is no risk of sucking too hard.”

Sydney and Tyson might not like the few seconds of intense sucking, but it provides immediate relief. You can see and hear their breathing become easier.

Here’s what I know:

·       Rarely do I publicly tout any product. I just don’t like putting my reputation on the line like that.

·       I’m totally intimidated by the thought of offering parenting advice in any forum that would include mothers who know eons more than me.

Yet, I went to bat for the NoseFrida. Draw your own conclusion.

But this isn’t like Hair Club for men. I’m not also a client. I’ve yet to ask Brooke to pony up to the NoseFrida and give it a whirl on my stuffy nose.

There are just some places even a husband and wife cannot go. Do a little dance, suck a little NoseFrida, get down tonight…

I also couldn’t legally go on TV and proclaim to be a regular user of the NoseFrida.

Why? My wife handles the snot sucking in our family.

That stuff’s just too gross for me.

Some Families Run a Never-Ending Race

We had a fix.

That is what I kept thinking as I walked the halls of Children’s Hospital and saw so many kids whose conditions are permanent. Kids who will never walk again, or live their lives on ventilators, or spend only a few more months with us before their short lives are snuffed out by a terminal disease.

I have great empathy for their parents. I’m in their stadium, but not in their race. I ran a sprint. These parents are running a marathon that never ends.

I don’t know if I have the strength to put on their shoes.

If they had my option – to gamble on a risky surgery that could provide a permanent “fix” for their child – they’d take it with tears of joy in their eyes.

Life has been a struggle for Brooke and I the past few months. In and out of the hospital. Relying on others. Unable to settle into the routine of normal family life. Huge hospital bills. Frustration over lack of progress.

Most of all, we’ve hated watching our little boy struggle. We see friends with happy babies reaching milestones Tyson should be achieving, yet he is far behind.

But we had a fix. We knew this surgery was coming and we knew, if successful, it would put us on a path to normalcy.

We are not 100 percent sure we are there, but we are in a better place than we were a week or two ago.

That is not the case for many of the parents I saw walking the halls of Cincinnati Children’s Hospital Medical Center. They don’t have a fix. Their life will never get back to normal.

I walked into the lobby of the cardiology unit the other day and saw a priest comforting a family of seven. I don’t know what happened, but, of course, I do.

When I walked to the parking garage, even at 11 p.m. at night, I saw people sitting in their cars or even on their open truck beds, eating, drinking, listening to music. Who hangs out in parking garages? Family members of children who have come to the hospital from outside of Cincinnati – Morgantown, W. Va., or Evansville, Ind., or Frankfort, Ky. People who need to be here for their child, but don’t have a local option or the cash to spring for a place to stay. They live out of their child’s hospital room and that few minutes they have in the parking garage is a respite from the challenges of loving and caring for a struggling child.

A few minutes of solace.

My wife sees this all the time. She is a special education teacher who takes care of children with disabilities. She’s had children in wheel chairs, children on ventilators, children who don’t speak or hear or comprehend. She’s had children whose problems are simply insurmountable, yet their parents chug along each and every day, trying to do their best at establishing a normal routine.

These parents are super heroes.  

I’ve never been an activist. As a journalist, I tried to use my skill as a writer to shed light or right wrongs or even change a small corner of the world. Up until recently, I worked in a field designed to help people – my little way of doing something to make a difference.

But I’ve never been big on volunteering or joining causes or doing this walk or that fundraiser. Group activities like that are just not in my nature, and I doubt that will change.

But seeing these children and their parents breaks my heart. Every day for them is Groundhog Day, the same bad news over and over.

I don’t know how they do it. I feel like I should do something to help.

Many people have rallied to our side during our ordeal with Tyson. People from all over the country – even the world – have voiced their support.

Thank you. Every prayer and good thought you have sent our way has helped. My wife and I are amazed at the support we have received and we wish we could throw a party for all of you.

But our sprint is hopefully ending. We had a fix. If we are lucky, we are moving on to a new phase in our life.

If I could ask one thing of those who are reading this, it would be to visit the Children’s Hospital nearest you. Ask how you might help. Or reach out to that family you know who struggles every day taking care of a child with a disability or terminal disease. Offer to give them a break. Make them a dinner. Buy them a gift card.

Say a thank you to the heroes who work at these places and take care of these children every day. Emotionally, it has to be tough.

I’m much more aware of this now. I don’t think I will ever be an activist, but I do think I will pick and choose the spots where I help. The Ronald McDonald House will go on the list of charities I annually cut checks to. So will Cincinnati Children’s.

I need to do more to help, and, while I don’t want to be preachy or melodramatic, if you have a decent life, so do you.

Because some families will never have a fix.

Tyson the Warrior

 

 

                                                                Tyson today

The past two days have been quite a blur.

From the gut-wrenching handoff to the surgery team early Monday morning, to the euphoria of the surgeon arriving seven hours later to tell us the operation was successful, to the shocking reality of seeing the damage to my son’s body, to the alternating hope and worry that comes with watching him struggle to recover, I am emotionally drained.

I am, however, the happiest I have been since we found out in February that Tyson had this serious heart condition. Since then, we’ve been trudging up a hill that we dreaded climbing, realizing the summit contained a surgery that put my child’s life at risk. Now that the surgery is over, I feel like we are coasting down the other side of the hill.

I was happier at 4 p.m. Monday than I was the day he was born. His birth day was filled with worry over whether he would need immediate surgery and whether he would survive. On Monday, after hearing positive news from Surgeon Roosevelt Bryant III, a gentle giant whose hands are as big as Tyson’s whole 8-pound body, I was walking on air.

Euphoric.

An hour later, I was sick to my stomach at seeing what looked like my son’s corpse in the Cardiac Intensive Care Unit.

Those are the highs and lows of the past 50 hours or so.  

If you are interested, I will try to quickly catch you up:

We arrived at the hospital at 6:30 a.m. Monday. Tyson was appropriately dressed in his Massillon Tigers outfit, ready to do battle. I also played Survivor’s Eye of the Tiger while they did some pre-surgery checks. (Hey, it worked for Rocky and it works – about 80 percent of the time – for my legendary high school football program, the Massillon Tigers.)

Yes, I was pulling out all the stops. This was serious. I needed my son to gear up for battle.

                                                                Tyson pre-surgery

Dr. Bryant stopped and spoke to us. This was my first chance to meet him. He’s about 6-foot-5 and solidly built, not skinny. I immediately pegged him as a defensive end on the football field.

He was alert and happy, despite it being so early. He spoke gently and confidently.

He seemed ready for this fight.

 

Handing Tyson off to the surgery team may have been the most difficult thing we’ve ever done. Not ashamed to admit I was crying. Truth be told, I wasn’t sure we’d get him back.

 

 

                                                          Saying Goodbye

After that, they ushered us into a private waiting room. They have one room they keep for the surgery that is the day’s longest and most serious. We won the prize on Monday and the reward was a fairly decent-sized room with comfortable chairs and a TV all to ourselves. I was thankful, because the main waiting room was filled with about 50 people.

We (Brooke, my mom and I) spent the time reading books and surfing the web. We didn’t even turn on the TV. I knew the Royals were welcoming a baby across the pond, but seriously, who the hell cares? Didn’t we fight a whole war so we wouldn’t have to worry about the British monarchy?

I was nervous, but I didn’t show it. I never show it. No use in getting others worked up with my anxiety.

They told us the surgery would be 4-6 hours, so we knew we were in for a long day. They did explain to us that at some point, when the surgery was completed, they would take us to a conference room and give us all the details. I told my wife that the whole conference room speech was a cover so we would think it routine and not panic as they shuffled us back to a private spot where they could deliver the ultimate bad news.

My mind is trained to consider the worse. I was convinced that if they took us to the conference room, they were going to tell me my son had died. I didn’t want to go to the conference room.

As the surgery progressed, they called us or met with us personally about every hour and a half to provide an update. All the updates were positive.

About 1:30, the nurse came in to tell us they were wrapping up and the surgeon would be in to see us shortly. She said everything went smoothly.

We were ecstatic. I can’t even describe in words the relief that went through that room.

An hour later, Dr. Bryant arrived. He explained the surgery was more challenging because Tyson is so small – they usually like to wait until the baby is double his size to perform this procedure, but Tyson was too sick and couldn’t wait. With the huge hands this guy has, I can only imagine how difficult it was working on my boy’s tiny heart.

But, he concluded, he felt everything went well and Tyson could avoid future surgeries. Ultimately, he could lead a normal life and even run marathons if he wanted.

(By the way, he delivered this news in the waiting room, not a conference room, kind of confirming my assumptions.)

I was so happy, I asked him to take a picture with my wife. You have to know me to know how out of character that is. I’m the kind of guy who could be eating dinner at the table next to Justin Timberlake and wouldn’t even say hello because I don’t like imposing on people. I don’t like to be bothered and I don’t like bothering other people, but this was a moment I had to capture.

 

 

                                              The Gentle Giant, Roosevelt Bryant III

They told us to wait about an hour as they got him all hooked up in the Cardiac Intensive Care Unit and they would call us up.

They did not call for a couple of hours, which, of course, made us wonder if something was wrong. But we were still so happy that when we did get the call, we rode the elevator grinning ear-to-ear.

Then, I saw a horrifying sight that turned my stomach. Tyson looked like a corpse.

He was lying on the table, pale and unsettlingly still. He was attached to a million wires. His eyes were open, but there was no life in them. They’d been coated with a glaze to keep them moist.

I almost turned around and walked out of the room. It was heartbreaking.

 

                                                        Our first glimpse

But somehow, they convinced us this was normal for this type of surgery and that he was actually doing ok. (I'm not so sure on that. I have a friend who works in a hospital and he said that was the most wires he has ever seen on a kid.)

We accepted them at their word and settled in for a bedside vigil that they tell us will probably last about 10 days, if all goes well.

And it seems to be going ok. He has not had problems with his heart, but he has been struggling with his lungs. He’s even had a collapse. Several times, he’s been clogged up and stopped breathing for a few seconds, leading them to “bag” him.

Scary stuff.

They hope this will stop once they take the breathing tube out, which they did this morning.  

Other than that, they tell us he is doing as well as can be expected.

The people at Cincinnati Children’s Hospital Medical Center are incredible. From Dr. Bryant, to Tyson’s cardiologist, Dr. Thomas Kimball, to every nurse, therapist and other medical professional we have encountered, this place is top notch. I know we had scheduling problems last week, but that is water under the bridge and every one I have encountered since 6:30 a.m. Monday morning has been tremendous.

We have a long way to go. Tyson will need to fully recover and that will take some time. He’ll likely return home with his feeding tube back in. He will still have regular cardiologist’s visits and other doctor visits. Because he is developmentally behind from doing nothing but struggling and sleeping the past 11 weeks, we will enroll him in therapy.

I’m eager to see what he is like with his mended heart. Life has been such a struggle so far.  Just sitting still, he would sweat like he was in a steam room. He got to the point where he wouldn’t eat because it was too much work.

In the days leading up to the surgery, he was either sleeping or crying. In fact, he would cry so hard for a couple of hours, he would exhaust himself and fall to sleep, only to wake up a couple hours later and repeat the cycle.

I’m eager to see his real disposition. I’m eager to see him happy and carefree.

I’m eager to meet my “real” son for the first time.

This I know: he is the toughest little 8-pound boy in the land.         

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.

  

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.