Here we go, again

CatalanosFall2016

We have made it an entire year and a half with no surgeries. What a blessing that is. But, we now find ourselves here at another surgery. I’m thankful it is not another heart surgery, but this abdominal surgery comes with many challenges. It’s hard for me to have this conversation. I tend to shut down a bit, so I’m going to do the best I can to keep the blog updated with information. And, maybe, just maybe, I’ll start sharing our adventures once again 🙂 For now, this is where we are at with Everett.

When E was born, along with his heart defect, he had an intestinal malrotation. Here is a little information on malrotation since most people are confused on what this means:

“The small and large intestines are the longest part of the digestive system. If stretched out to their full length, they would measure more than 20 feet long by adulthood, but because they’re folded up, they fit into the relatively small space inside the abdomen.

Malrotation occurs when the intestines don’t position themselves normally during fetal development and aren’t attached inside properly as a result. The exact reason this occurs is unknown.

When a fetus develops in the womb, the intestines start out as a small, straight tube between the stomach and the rectum. As this tube develops into separate organs, the intestines move into the umbilical cord, which supplies nutrients to the developing embryo. Near the end of the first trimester of pregnancy, the intestines move from the umbilical cord into the abdomen. When they don’t properly turn after moving into the abdomen, malrotation occurs.”

Anyway, E had surgery to repair his malrotation at 6 weeks old. This is called the Ladd’s Procedure. About a year and a half later, after E’s second heart surgery, E ended up in emergency surgery for a bowel obstruction, caused by one of the bands from his initial procedure.

Over the last couple years, we have struggled with E vomiting and having periodic intense abdominal pain. It has been a long process with no relief. From the pediatrician to the gastroenterologist to ENT to neurology to an allergist. If anyone needs a specialist recommendation, we have probably seen one. E has undergone countless procedures in this time to find an answer for his pain and vomiting – X-rays, upper GI series, an upper endoscopy, lab work, sleep studies, an MRI, an EEG, and a number of medications for reflux and migraines.

Through it all, he was diagnosed with Abdominal Migraines or Cyclic Vomiting. This is a variant of traditional migraines. We accepted this diagnosis and began working toward relief for him. At this time, E was suffering from weekly episodes. For months, we worked with the neurologist trying to find the right combination of medications for E. And, for months, it all failed. We decided it was time to remove him from the meds and see if things were worse. They were not, and they still weren’t better. Exhausted and frustrated for our little guy, we took a break from specialists and helped him through each episode with extra comfort and anti-nausea medication.

A couple weeks ago, E had another episode, but along with it, he was in such pain that he was rolling on the floor screaming and crying. This is the type of pain we saw with his bowel obstruction, as well as his other intense episodes. It was time to see GI again.

E’s surgery will be on February 24. The idea is that E is having intermittent obstructions caused by one of the bands from his initial Ladd’s procedure, since we know they have caused a problem in the past. He may still be having occasional migraines, as well, but this could be causing the bulk of his problems. The plan is for a laparoscopic procedure, and, hopefully, the surgeon will find a problem area that can be fixed. If laparoscopic is unsuccessful, the surgeon is prepared to go in through his old incision, if needed, but we pray that is not necessary.

Because he is on Coumadin for his heart valve, it complicates things and produces extra anxiety for us. But, everyone is in agreement that it is better to handle this in a planned, controlled environment instead of waiting for an emergency situation with another full-blown bowel obstruction.

At the end of this week, we will begin bridging from Coumadin to twice-a-day Lovenox injections. He will most likely be on Lovenox afterward, as well. My heart just aches for him. E is such a trooper through it all, but there are two things he hates more than anything – lab draws and shots. And, I’ve heard Lovenox injections are awful. So, the plan is bribery. We are going to put together the mother of all prize boxes to get him through each injection. This may be more expensive than Christmas. Ha.

I also need some extra prayers to be able to give him these shots. Pricking his finger once a week to check his INR is tough enough on this momma. I don’t want to be the reason my baby cries.

Please keep Everett and all of our family in your prayers. This is hard on everyone, but we try our best to keep smiling and not let this life knock us down.

Photo Credit: Kerri Dickey Photography

Anything but Ordinary

Every day, I look at our Everett and think of him as just another ordinary little boy. Because he is. He loves cars and trucks and everything that “Vrooms.” He shows no fear, and often leaps from furniture, always with a “legitimate” excuse. Mud is his best friend. He lives for the outdoors. And, not a day passes that a super hero of some form or fashion doesn’t fly through the house, looking suspiciously like our E.

Then, there are days when it ambushes me. Austin had his first soccer practice tonight. He was ecstatic. And, Everett was just as excited as Austin. He marveled at the brightly colored ball and relished in his turn kicking it through the house. When Philip left with Austin for practice, Everett approached me. He wrapped his arms around me, threw his head back and looked up with those beautiful brown eyes. “When do I get to play on a soccer team?” he asked, grinning from ear to ear.

My heart sank. I studied his sweet face. He still had the stubborn remnants of the tape from a sleep study two nights prior. Another reminder that things weren’t exactly normal, try as we might. The look of anticipation and hope on his innocent face took my breath. Never, I thought. Along with so many others. How many times will I hear this plea over the years? How much harder will it get?

So often, I utter the words, “I hate Coumadin.” It’s finicky. It’s unpredictable. It’s frustrating. It steals away parts of my son’s childhood. It scares his momma with its highs and lows, and what if’s. It means weekly, sometimes more, finger pricks and an occasional lab. It means anxiety over simple procedures. It’s scrutiny over the bruises. Scrutiny over the blood. And, when it feels like too much, I stop and try to catch my breath.

I breathe and remember. Remember what else it is. The most important thing it is. It’s life-changing. Life-saving. It enables him to have that mechanical mitral valve, clicking away so consistently, so peacefully in his perfect little heart. It enables him to have life, a good life, even when it might not be as I had ever envisioned.

As he stares up at me, awaiting my reply, I smile gently down at him. I assure him we will find something amazing for him to do instead. That we will find something special just for him. And, tonight, that was enough. He squeezed me tight and scampered off jabbering about monsters and Jedis. Day by day. One day at a time.

coffee for all

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This morning, the kids and I headed to the pediatrician’s office for Leah’s four-month well check. Leah is perfectly healthy, and it seems at the rate she is growing she will quickly surpass her brothers. Maybe that will provide an incentive for the boys to actually eat, but let’s not hold our breath on that one.

Since we were headed to the hospital, I decided what better place to continue our Random Acts of Kindness for the day? No one really wants to spend their time in a doctor’s office for any kind of appointment (No offense, Dad!), so we decided to leave a little “pick me up” in two of the elevators. I know any day that I have to haul all three kids to an appointment, a significant amount of caffeine is essential. Of course, a glass of wine at the end of the day is, too, but I thought a gift card for coffee might be easier to attach to the wall than a bottle of wine.

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When I presented the plan to Austin, he loved the idea of being sneaky and leaving a surprise in the elevator. Everett, on the other hand, couldn’t care less. He was preoccupied with that darn call button.

“Yes, Mr. Security Guard, it’s us again. I know we talk almost every week, and I apologize for the thousandth time that I still have not managed to successfully block my two-year-old’s evasive maneuvers. And, no, this is probably not the last time we’ll be chatting. Have a great day.”

Every time we leave an appointment, I feel wiped because no doubt there is always whining, crying, or just sheer ridiculousness from trying to wrangle the boys. So, after every appointment, I usually treat myself to a little caffeine. I’m hoping today someone enjoyed their own little “pick me up” on us.

“Donut” the toys

Our home is overrun with toys. My children have commandeered most rooms in our house with their ridiculous number of trucks, cars, LEGOs, clothes and more. Even our bedroom has become a casualty.

There are the obnoxiously loud toys, the puzzles that lose pieces within minutes, and, an entire fleet of ride-on toys, indoor and out. It overwhelms me. There is too much. But, slopping through it all is a feat in itself.

Up until this point, toys have only been cleaned out in the secrecy of night, and then subtly donated while the boys were at school. The few times I actually tried to pick through toys in their presence, they immediately latched on to anything that landed in the box. You know that block sorter that hasn’t been touched in two years? Yeah. They can’t live without it. And, that police car that only has two wheels, one door and a sickly-sounding siren? How could I even consider dumping that in the trash?

So, when I decided to make our Act of Kindness today about giving to others AND doing it with a happy heart, my expectations were a bit low. “Mine” is a popular word around these parts, and “Share” usually only applies to germs. To start off small, I asked the boys to each pick one toy that we could send to a child that didn’t have as much as them (and, a single Matchbox car did not count). After talking about what it meant to donate (No, Everett. Not donuts.) and being grateful, I was shocked how eagerly Austin began picking toys to give. For fear that he didn’t fully comprehend the idea here, I reiterated that we were giving them to another child and we would no longer have them in our home. Still cheerful, he selected a spaceship, while Everett chose a stuffed animal from his mass pile. I applauded their selections and dropped them in with the rest of our donation lot.

As I began loading boxes into the car, I noticed Austin eyeing the spaceship. He looked at me, and I knew he had changed his mind.

“Um, Momma. I think I want to play with my spaceship,” he said.

I asked him if he was sure, and he was. Very sure. But, he would have to choose another toy to give away. Without hesitation, he replaced it with a tractor and a dump truck. Two for one. I guess he really did want that spaceship.

Before any other substitutions could be made, we drove to the local family services center. Along the way, I fielded more questions from the kids about what it means to donate. Of course, all Everett heard was “donut” so I listened to him chanting that on repeat for the duration of the drive. But, Austin seemed genuinely interested.

I’m not going to lie. This is about the time I was congratulating myself on a job well done teaching my children a valuable life lesson, and, at least one of them seemed to embrace the concept. Success. I was ready to pat myself on the back. As we drove away, Austin’s little voice traveled through the car. “Are we going to buy new toys now?” **Smack my head**

Maybe we don’t quite understand what just happened. But, hey, it’s a start. Let’s try this again.

Day Two: Just Smile

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Today’s act was all Austin. Without any prompting, he came up with the idea to draw smiley faces on the sidewalks around our neighborhood. I love it.

We drew dozens of smiley faces and placed a few cheerful messages along our path. And, of course, let’s not forget a little original artwork that strayed from the initial plan.

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We planned to hit some of the major sidewalks through the neighborhood, but, ultimately, only made it down our street. Unfortunately, Everett was having a rough day, and it didn’t take long before he gave up on our walk. I carried him while he rested on my shoulder, and I pushed Leah in the stroller for a bit farther while Austin sprinkled the sidewalk with smiles. But, carrying 27 pounds of dead weight in 90 degrees gets old fast. So, we had to abandon our mission.

At least, we were able to spread a little cheer on our street. Perhaps, tomorrow, it’s time to leave the neighborhood.

Day One: Happy Mail

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We kicked off our Acts of Kindness close to home with a letter and pictures for our mailman. We decided to write a “thank you” note, as well as leave something special for him. I asked the boys what we should leave with the note. I wholly expected overwhelming responses of cookies and candy because that’s the answer to everything in my children’s world. But, the first response? “I have a good idea,” Austin said. “Let’s get him a puppy.” Hmm… Who wouldn’t want a puppy in a mailbox? Maybe not so much.

When I gave the veto, Austin took a more realistic turn and volunteered making pictures for him. Everett chimed in with “PAINT! PAINT!”

So, that’s what we did:

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Each boy painted a special picture just for the mailman. We tied them up with our “thank you” note and left it in the mailbox.

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For the next three hours, the boys pinged back and forth every five minutes to see if the mailman had arrived.

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Amazingly, Austin caught that split moment when he pulled in front of our house, and I have never seen a bigger grin on that child’s face. It thrilled him to know the mailman received our little surprise. He is already asking what we are going to do tomorrow. Day One. Success.

finding joy

Joy

We are about a month from Everett’s heart surgery. Despite my best efforts, it inevitably creeps into my mind each day. My stomach stays in knots, and rarely do I end a day without a pounding headache. I’m not ready for this again.

I look at my precious child with his big brown eyes, his mess of hair and that mischievous grin he wears all too frequently. It’s impossible to believe this is where we are again. But, it’s hard to ignore.

We escaped reality for a week at the beach, and we arrived home this weekend. As I began unpacking our clothes, I haphazardly knocked my jewelry box and a small necklace toppled to the floor. I knelt to retrieve it and stayed there. This necklace. This special little necklace. “Find Joy in the Journey” is all it reads. A sweet friend gifted this to me during Everett’s surgeries last year. And, it immediately made me recall this verse.

“Consider it pure JOY my brothers and sisters whenever you face trials of many kinds.” James 1:2

Pure Joy. Instead of allowing the dread of this month to consume us, we are going to persevere and focus on Joy, one preschool-sized act at a time.

Our mission over the next month will be a “Random Act of Kindness” each day, spearheaded by the four- and two-year-old (and, maybe a little help from Mom.) Obviously, this isn’t an original idea, and it won’t be anything earth shattering, but it is something that could potentially invoke a smile in someone that just might need it. And, that is good enough for me right now.

It’s too easy to dwell on the pain and heartache in this life. Instead of focusing on ours, we intend to sprinkle a little love here and there, and maybe in the midst of it all, we’ll find our JOY in this journey.

let’s try this again

Oh, my dear blog. How I have purposely neglected you for so long. I have found it difficult to leap back in without addressing the last year. Several failed attempts and still nothing. There are too many ugly things that I didn’t want to face. I’ve been waiting for an ample amount of time to pass to where I would no longer feel so vulnerable and could continue writing as if nothing occurred. But, here, a year later, I find ourselves smack back in the midst of it all. I realize I can’t truly avoid the realities of life.

I find myself contentedly writing about both the good and the bad, but, the ugly… well, I can’t seem to face those words on paper. And, Everett’s heart surgeries, well, those make up the majority of my ugly. I don’t like to talk about it. I don’t like to write about it. Because, frankly, it turns me into a blubbering mess. But, here I am, and I guess I’m going to face it… another day.

To get back into the swing of things, in a nutshell…. a very tiny nutshell…. here’s our last year:

Surgeries for Everett, new baby girl, South Carolina, Massachusetts, Colorado, a ridiculous number of absurdities (that may be revisited in another post), crammed schedules, plenty of smiles, lots of laughs, too many tantrums, and a lot of love.