Nicholas Updates 2019

July 25, 2019 posted 10:13pm:

It seems forever since our last update post. Life has been busy, as always. I work a lot and struggle at times in trying to balance the time spent away with quality time spent together. Like with most things in life, that delicate balance is a perpetual quest.

Nicholas has been doing well. We were concerned with how he would cope with the Florida summer heat but he has been doing very well. We do short outings equipped with water sprayers and fans and incorporate water activities during the week to beat the heat.

Nicholas weighed in this week at 28.6 pounds. He’s not gaining much but we take solace in the fact that he‘s not going backwards. The closer to 30 lbs we get, the closer we get to the reality of his next surgery. Although Nick doesn’t eat a lot by mouth, his favorites foods are pickles, eggs, chocolate, pepperoni, and popcorn. So at any given time, our house will always have those things on hand.

The next official marker for us is this fall when we will get a blood test to see where Nick’s hemoglobin levels are. We plan to get it done in Florida and the results sent to his cardiologist in Minnesota. They will then either determine that we are staying on course and will head into surgery next Spring or that we have to accelerate our timetable for surgery this fall/winter.

In the meantime, we are making the most out of our summer and every day we spend together. July has come and is almost already gone. Grandma Kathy came and spent a week with us during the Fourth of July and our nephew Jake is spending a couple of weeks with us to finish out July. It’s always nice to have family around and it’s been extra nice for Jimmy because he gets another set of hands to help with the kids while I’m at work.

August brings birthdays for AJ who is turning 6 and Nicholas who is turning 4! We have a small party planned for the kids at a hotel where we will also be celebrating our niece Maddie’s birthday too. We are planning on doing a pirate theme birthday for the kids and I can’t wait to decorate and celebrate them. In August, we are welcoming James back from his extended visit to Minnesota from which he was greatly missed. We are also going to be hosting James’ best friend Alex from Michigan. The boys are planning to spend some time going to theme parks and hanging out before the realities of adulthood fast approaches them.

September will bring a visit from Grandma Erin. Then comes Halloween, more family visits, Jimmy leaving for our niece’s wedding in Arizona, Thanksgiving, even more family visits, Christmas, and before we know it, it will be 2020. Somewhere in between all of that, many more Disney visits and family memories being made. Whew!

“Cherish your yesterdays, dream your tomorrows and live your todays.”

July 24, 2019 posted 9:56pm:

A little afternoon Florida rain couldn’t stop our crew from enjoying the day at Hollywood Studios.

“Some people feel the rain. Others just get wet.”

July 15, 2019 posted 9:53pm:

“You cannot withstand the storm”

“I AM the STORM”

Our Warrior 💪🏼
It’s been quite hectic lately, as life usually is for us. I will post a complete update in the coming days ahead.

June 16, 2019 posted 7:44am:

Dads don’t always get the credit they deserve because we primarily see moms as the caretakers of children. Thank you to all the dads that aren’t always seen but always there.

To the special dad in our house, I wouldn’t be the mom and wife I am if it wasn’t for the dad and man you are. Thank you for showing our kids how to love and be loved. Happy Father’s Day

June 14, 2019 posted 10:44pm:

Fun Nick Fact #4:
Nick likes to play with legos and magnets but he really loves putting together puzzles. He just seems to have the patience and knack for it.

“It’s always the small pieces that make the big picture.”

Wishing you all a great weekend!

May 21, 2019 posted 6:42pm:

I’ve neglected to make updates as life has been a little busy. So I figured it was time to catch up as we are on a mini staycation from our extended vacation.

Nick is a little over 28 pounds now. For those who have followed our story, you know it’s been a long road to get here. Our ultimate goal is still to hit 30 pounds before his next surgery which is still on track for next Spring.

Nick is eating just the tiniest bit more food than before. Probably not enough of a gain to where anyone would notice. We know that intensive feeding therapy is on the horizon. We’ve curbed it for now because quite frankly, we’ve made a decision to sacrifice a little eating for his overall quality of life. At this point in our journey, with an impended surgery, we really wanted to focus on making as memories as possible and enjoy our time together as a family.

Since we focus so much on Nick’s heart health we tend to curb “regular” milestones like potty training. We haven’t been stressing it but within the last couple of weeks, Nick has taken the initiative and is in full on potty training mode. This kid never ceases to amaze us in what he is capable of.

Our staycation has been fun packed with activities. There is a full list of things to keep everyone busy and involved. The kids participated in a bingo game where Nick won and picked out some sunglasses as his prize. The littles also entered a family puzzle race, they narrowly lost and finished in second place. We did however win a trophy as “House Viner” held it down during music trivia. We also all got to be kids as we’ve played every game in the arcade. We scored some fun prizes there too.

This place also has the cutest kid friendly pool and splash pad areas. Nick is obsessed with the pirate pool that has multiple slides. I’ve loved every moment of just watching him. He lives and loves so intensely and purely, makes my heart melt. We only stay out for about an hour because Nick is sensitive to temperatures and sun, but even if it’s for just an hour, he’s been able to blend in as just another ordinary toddler. We, just another ordinary family. And what makes that even more special is that Nick is so ordinarily extraordinary.

Be like Nick, be EXTRAordinary! Happy Tuesday!

May 17, 2019 posted 11:32am:
Our gang of little wildlings!
Happy Game of Thrones series finale weekend. What are your guesses, who will be sitting on the Iron throne?

May 9, 2019 posted 4:33pm:

Fun Nick Fact #3: When Nick lounges around, he likes to sit with his leg crossed over.

I will look over at him when he is sitting like that and think to myself, that is just so Nick. I love that we get to witness the life of this incredible little human and all his little nuances.

“Enjoy the little things in life, because one day you will look back, and realize they were the big things.”

May 4, 2019 posted 8:00am:
Today is Heterotaxy Awareness Day, May the 4th be with you!

May 3, 2019 posted 1:09pm:

This is a recap of the past couple of days.

Day 1:
-Josephine coughed 2 times but I thought it just sounded sick.
-No fevers. Symptoms did not escalate.

Day 2:
-Josephine has no cough but started a runny nose.
-No fevers. No new symptoms.

Day 3:
-Josephine has no symptoms.
-AJ & I had a sore throat.
-No fevers during the day.
-AJ spiked a 101 fever about midnight
-AJ also has also developed croupy cough
-Nick, still did not present any symptoms

Day 4:
-Early morning, Nick woke up very croupy sounding cough and laboring very hard to breathe.
-AJ still has slight fever
-Nick no fever but trip to the ER

Because we had fever in the house and because Nick was really laboring to breathe, we took a trip into the children’s hospital ER. By the time we got to the hospital, Nick‘s breathing had already sounded better but better safe than sorry!

So 3 hours, chest X-rays, strep swab, and virus swabs later, we were sent home. The radiologist cleared the xrays. Strep came back negative. The virus panel was going to take an additional hour so we got discharged and would be getting a call for the results.

On the drive home and as we were making a pit stop to the drugstore, the nurse called with the results. Good ole rhinovirus, common cold virus. All other viruses and flu were negative. It’s “just a cold” but it is never just a cold with us. We are lucky to be home because some kiddos with “just a cold” with Nick’s condition go to the hospital and don’t get a chance to make it home. Please do your part and help protect others by washing your hands and wearing masks when you are sick.

As soon as we got home, I checked Nick’s temperature and he has a slight fever now. We are going to monitor all the kids and be administering rounds of acetaminophen and ibuprofen. We do each every six hours but have them overlap. So for example Tylenol at 12 and Motrin at 3, then repeat Tylenol at 6 and Motrin at 9. This has always worked well for us.

Tying to get all the kids on the mend. Our nephew Jake is flying in tomorrow to hang out with us for a few days. I’m hoping to keep our germs to ourselves and enjoy the time we get to spend together.

So today is going to be a movies, fluids, and quiet kind of day. Rest today so our Best tomorrow!

April 30, 2019 posted 8:51pm:

Spent another magical day at Disney! We are going to finish the night with fireworks. We scored some perfect seats at Casey’s Corner. Hoping you all find a little magic in your days.

“Those who don’t believe in magic will never find it”

April 26, 2019 posted 8:18pm:

We went to Old Town to get some fresh air and walk around. The kids got to play some carnival games, look at the lined up muscle cars, and mined some gems from the mining area. The best part was that we were together ❤️ Have a great weekend!

We may not have it all together,
but together we have it all.”

April 24, 2019 posted 9:26am:

Nick got to drive the golf cart for a few minutes during one of our daily outings.

“Sometimes the most scenic roads in life are the detours you didn’t mean to take.” -Blount

April 22, 2019 posted 2:58pm:
Our lives became so much more beautiful when Nicholas entered it. Just wanted to share some of our love today ❤️ Happy Monday, have a great week!

April 21, 2019 posted 3:33pm:

Where else would we be today but the happiest place on earth!

Rejoice for He has Risen! Happy Easter everyone!

April 20, 2019 posted 6:53pm:

Fun filled day with an egg hunt, dance party, and a visit from the Easter Bunny!

Our hearts are so full as we are beyond blessed ❤️ Wishing everyone a very Happy and Blessed Easter.

April 11, 2019 posted 8:08pm:

Twinning today with Daddy!

We went to Epcot today but we didn’t make it too long because it was pretty hot out. We are so fortunate to be able to come and go to the Disney parks with our annual passes. We have the flexibility to stay as long or as short as our life dictates.

"The flower that blooms in adversity is the most rare and beautiful of all." -The Emperor (Mulan)

April 8, 2019 posted 9:29pm:

We spent the day with Grandma Kathy walking around an outdoor shopping mall and then went out to dinner. Nick tried to use chopsticks for the first time and even ate a little strawberry ice cream!

No need for the fortune cookies because we are the architects of our own future

April 4, 2019 posted 2:45pm:
No place like Disney to carry our worries least for the day

April 3, 2019 posted 12:00am:

So after waiting for our delayed plane, we finally board and prepare to leave. The plane was completely empty and as I approached my seat number I see that I’ve passed over a dozen empty rows and I notice that I’m headed towards the back of the plane where a lot of the passengers were already seated. We were almost the last ones to board because I intentionally waited so we could avoid any unnecessary time on the plane.

I get to our row and realize that it was an aisle and middle seat. The dilemma ensues. I don’t want to place Nick in the middle because he’d be too close to a stranger and if I put him in the isle he’s still somewhat close to a stranger. So, the lesser of 2 evils, I put him in the aisle seat.

Some of the passengers are asking the flight attendant to move to an empty row and as she approaches, I’m hoping maybe we can get lucky and be able to move as well. When the flight attendant gets me, I politely ask if there was a way we could move to an empty row so that I could try to isolate Nick as much as I could. I even suggested paying if I needed to so that we could move to the middle of the plane. She replied that she didn’t understand what I was asking and said I could move to any empty row behind me. I tried to interject that I didn’t want to move behind, because there was a sick cough behind me, but she cut me off and walked away.

I should have paid the extra $40 and guaranteed a window seat for Nick. That was my mistake, I guess we just got lucky on the flight going to Minnesota and I didn’t think much of it. The emphasis was put on the appointments and i dropped the ball on the fight thing.

So, instead of arguing or causing a scene we sat down. And in that moment I felt defeated. All the good news from the day was great but the bad news is always there, there’s absolutely going to be another surgery. And that surgery will help Nick, but it will NOT fix him. We can’t change that no matter what and that helpless feeling just got compounded by the denial of a simple thing as moving to another seat.

I admit, I’m very exhausted; physically, mentally, and spiritually. So I’m quite the overly emotional wreck at the moment. The extra time I’ve gotten to spend the last couple of days with just Nick has been so amazingly bitter sweet.

So as I sit writing this on a darkened airplane, I am practically balling and choking back my tears next to a complete stranger. Thankfully, Nick is sleeping peacefully with his teddy in my lap so he can’t see me. I just stare down at him and sing to him in my head “hush little baby...”

Sometimes, I think we need to do better as humans. Always try to be more kind, patient, and understanding. Because when we do those things for each other, it could help to lighten someone’s load and it nourishes our own souls. You never know the burden someone is carrying, be a blessing.

April 2, 2019 posted 7:32pm:

We made it through a busy day of appointments, wind blown wobbly drive back to the airport, rental car return, and adventure through TSA security. Now we are just hanging out at the gate! I finally got to grab a quick bite to eat and all is right with the world again. On a side note, Hangry Adulting is serious and should be avoided at all costs.

The last appointment with the cardiologist went very well. Nothing new to report in regards to Nick’s heart function. All scans showed no change, which at this point is good.

Last visit, Nick got on the growth chart at 1%. Today, he inched up and is now at the 3% marker. Slowly but surely we keep getting closer to our 30 pound marker, he was just shy of 28 pounds.

The only item that was put on the radar was his hemoglobin levels. Compared to 1 1/2 years ago it was higher. Which in part is to be expected but because his baseline started so low, the difference might be an anomaly that we want to monitor. The hemoglobin levels can indicate that Nick’s body isn’t getting enough oxygen and therefore he has to create more red blood cells to deliver what he needs. As he grows, he is outgrowing his last procedure.

We will check his hemoglobin levels again in about 6 months and if they stay the same, we will plan for our normal Spring visit when we will then look at dates to tentatively schedule for surgery. If his levels are elevated in 6 months, then we may have to push our surgery dates sooner and it will likely be this fall.

Praying his levels stay the same so we can hold off until Spring of 2020. I feel like we need more time to get him bigger and quite honestly, I just don’t think we’re ready. You’re never truly ready but there is a level of acceptance and we’re just not there yet. But, now that we know what we know, we will have to become that much closer to surrendering to the reality of it all.

Thank you all for the well wishes and prayers, they really do help to lift us up!

April 2, 2019 posted 2:47pm:

This kid amazes me more and more each day ❤️

First thing this morning was the echo and Nick knocked it out of the park! He picked a movie to watch and didn’t flinch a bit during the whole procedure. Hopefully they got some really good images to review.

Second stop was the lab, yikes! 2 large tubes of blood were drawn. He cried as they fished his vein but immediately afterwards, Nick was back to his smiley self and thanking the techs for the rubber ducky he earned.

Next appointment was a stop for some xrays. He was so amazing and stayed perfectly still! He’s such a big boy and loves doing things independently now, where did our little guy go 😭

Just waiting for the final part of our day which is to meet with the cardiologist. We will discuss the images and labs done earlier and a plan for the future. This is always the best and worst part. A relief that the day is almost done at the hospital but nerve wracking because of what he has to say. Fingers crossed!

April 2, 2019 posted 11:19am:

Made it to Rochester from the cities this morning. The drive was a bit treacherous. I just got an economy size rental car and I thought we were going to get stuck because the potholes we had to dodge might have been bigger than the car!

Just waiting for our first appointment. As always, Nick is such a trooper

April 1, 2019 posted 7:12am:

Fully boarded plane and the pilot announcement informs us that the onboard computer system to fly is down. My anxiety is already at 1000% with every cough I hear but now we have to sit here until they “can figure out what to do” 😳

Meanwhile, Nick is just sitting buckled in waiting to “blast off”. I just love his enthusiasm and excitement!

April 1, 2019 posted 6:09am:

Early morning at the airport. Today marks a new adventure for Nicholas, his first plane ride! We are taking a 1 day trip into Minnesota for a full day of doctors appointments at the Mayo tomorrow. Then, we fly back out to Florida tomorrow night.

Clorox wipes in hand, we got masked up to go through security but since we are isolated by ourselves at the gate, I let Nick take his mask off until we get on the plane. It’s April but a late wave of the flu is going around and we don’t want to take any chances.

Fingers crossed for safe travels and good news from our appointments tomorrow!

March 28, 2019 posted 12:14pm:

It’s not quite the weekend but we’ve already started Goofing around!

Wishing you all an easy Thursday, Friday is almost here!

March 27, 2019 posted 2:48pm:

Fun Nick Fact #2: Nick uses “mine” for my. Example: “I got something in mine eye.”

I like to think it’s because he’s sophisticated and it makes him sound Shakespearean! 😂

Happy Wednesday!

March 25, 2019 posted 11:18am:
Happy Monday! This is for all the Harry Potter fans out there “Snuggle this Muggle”

March 17, 2019 posted 11:02am:

Chances of having heterotaxy 1:10,000
Chances of finding a four leaf clover 1:10,000

We always say we’re so lucky to have Nicholas in our lives. Science confirms it, he’s our real life four leaf clover! 💚

Wishing you all a little luck of the Irish, Happy St. Patrick’s Day! 🍀

March 15, 2019 posted 6:27pm:

Waterpark fun today! Happy Friday!

“Keep your face always toward the sunshine and shadows will fall behind you.” –Whitman

March 15, 2019 posted 7:46am:
“Cousins are friends that will love you forever”

March 12, 2019 posted 6:16pm:

Looking at these faces are wonderful reminders of the amazingly beautiful life that Jimmy and I have built together, Happy 15 year anniversary to us ❤️

Where else would spend our special day but at our favorite place, Epcot!

February 23, 2019 posted 12:33pm: 
Fun Nick Fact #1: Nick sleeps laying across pillows instead of laying only his head on them. None of the other kids do that, I love that it’s just his thing
February 14, 2019 posted 12:20pm:
Heading to Epcot with our Valentine‘s date

January 31, 2019 posted 8:09pm:

Don’t forget, tomorrow marks the beginning of February and it’s also National Wear Red Day.

We wear red for Nicholas and to raise awareness for CHD (congenital heart disease)
Show us your support and show us your red!

January 22, 2019 posted 4:34pm:
Spending the afternoon at one of our favorite spots, Epcot!
January 13, 2019 posted 2:20pm:
Pool day with the littles! 80 degrees in January, I love Florida winters🌞

January 12, 2019 posted 11:24am:

I love Saturday mornings. I wake up, start the coffee maker, turn the tv on soccer, and I fill Nick’s medicine syringes for the following week. This is going to sound strange but after I’m finished filling meds, I always get this sense of accomplishment and fulfillment from it. I celebrate by enjoying a piping hot cup of coffee because it’s early and I’m kid free for just a couple of quiet hours. Sometimes Josephine is awake but she has adapted to mommy’s Saturday ritual and I think she even enjoys her alone time away from her brothers too.

The search for happiness isn’t found out in the world, it lives within us. Hoping you discover your happiness today and everyday, Happy Saturday!

January 10, 2019 posted 9:07pm:

Happy 2019! It’s been a while since our last update.

So far 2019 has started out pretty fantastic. We’re all enjoying the warm Florida weather. It’s crazy that we’ve been able to be outside and swimming in January. We also made it out to Animal Kingdom a few days ago for the first time. The kids had fun, especially the safari ride when they got to see some animals up close. Truth be told, I was a little surprised by Disney’s zoo portion. I expected it to be huge and grand like the rest of their parks and attractions. I love the animal conservation efforts but I guess my expectation was something more in line with our experiences with Busch Gardens.

We stay plenty busy but soaking in this slower pace of life. We’ve been able to visit with old friends and have made plans for the kids to play with their new found friends too.

Nick has made some strides forward with eating. He requests specific food items for us to get him and he is willing to try almost everything we give him. I have a feeling that one of these days, he’ll just start eating like it’s no big deal. Fingers crossed! His weight has been holding steady while we’ve been away and despite his increased activity level, he is ticking slightly upwards and is just past 26 pounds 5 ounces. Our target goal of 30 pounds still seems forever away but as they say, Rome wasn’t built in a day.

Nick has also made some huge strides with potty training. Normally our marker was to have the kids potty trained before they hit their 3rd birthday. With Nick, we didn’t stress it as much because we figured we had bigger things to tackle. Also, since Josephine is still in diapers, in many cases it was just easier. Since Nick is doing so well, in the last few weeks we’ve focused more on training and he is doing great so far. He really responded well to praise and star reward system. He gets extra stars for potty training; one star for number 1 and two stars for number 2. After he get all the stars on our chart, he gets to pick out a toy.

Hopefully more good news and updates to come. Nick’s shirt is for his heterotaxy brother Christian and family ❤️

#CHDLife #Nicksheart #CHDAwareness #MyCHDwarrior