Nicholas Updates 2020
December 30, 2020:
Absolutely beautiful day filled with sunshine. We took a long drive along the beaches and stopped into a local Artist boutique area. I love the idea of supporting local artists and being able to have a one of a kind piece of art to remember our time here.
"Live in the sunshine, swim the sea, drink the wild air"
December 24, 2020:
"Twas the night before Christmas.....
Happy Christmas to all, and to all a good night."
December 23, 2020:
Find your happy place!
December 22. 2020:
We're cooking up some fun today! The kids personalized their new aprons in preparation to bake cookies for Santa on Christmas Eve.
Sending you our warmest wishes for a Christmas season filled with love, peace, and joy.
"It's the most wonderful time of the year"
December 19, 2020:
We spent the day mostly lounging around. The kids started their day by opening a gift that was waiting for them by our Christmas palm tree. I've planned a small gift each morning until Santa's gift on Christmas day. The gifts are mostly things we will do together for the day. One day I have planned making our own hot cocoa bombs and each kid is getting a new mug. Some of the other days I have the kids making and decorating ornaments made out of salt dough, decorating beach themed stockings, baking and decorating cookies, and more fun things like family movie and game nights.
Later in the day, we did some trivia questions and tasted items from around the world from our special holiday Yums box of treats. We get a box every month which features a specific country. It's been a fun way to incorporate geography and social studies for the kids. The bonus is that there are some really exceptional treats that we would have otherwise never explored. The family favorite from today were the chocolate truffles from France.
Later in the afternoon, we took a drive to see the beach and smell the Gulf air. On our way back, we picked up dinner from a little Mexican restaurant in an effort to support small businesses.
Thankful for today and looking forward to making more memories together tomorrow.
"Live your truth. Express your love. Share your enthusiasm. Take action towards your dreams. Walk your talk. Dance and sing to your music. Embrace your blessings. Make today worth remembering."
December 19, 2020:
Mornings are sure better with James.
"Family is not an important thing, it's everything"
December 14, 2020:
Our little St. Nick wanted to thank everyone for their donations! Your generosity allowed us to get our first batch of gift bags ready to go to families in the hospital!
Our family is also getting ready to spend Christmas in Florida so we can spend time with James. He gets 2 weeks of leave and we're so excited to see him. The base James lives on is very small and he basically lives in lockdown mode where masks are mandatory so we feel pretty safe as far as covid risk is concerned.
Truth be told, I'm also excited to get a little break from the cold. A tropical Christmas suits me just fine.
"We may not have it all together, but together we have it all"
December 1, 2020:
Let's be honest. Its just been a , in the midst of toliet paper shortage, kind of year!
It is really difficult to ask for money when so many American families are struggling with continued lockdowns. But the days continue forward and Giving Tuesday is already here.
We completely understand if you are not able to give and we are always incredibly grateful and appreciate every donation we receive. 100% of the money we collect is used to directly benefit the heart/heterotaxy community.
Jimmy and I try to stockpile toys throughout the year for our annual Little St. Nick's toy drive. We will continue to make a toy donation to our local Children's Hospital, but understanding the extra hardships on families this year, we wanted to focus on something a little different.
When we were in the hospital, we had many conversations with the nursing staff. They are a wealth of knowledge and a great source for information. During one of our conversations, we were told that many families struggled to visit their child in the hospital because of the cost to commute back and forth was too great. That was something that stayed with us. The extra financial burden on families adds to the existing stress, which is already unbearable.
It made me even more grateful that we could be with Nick everyday. It would also become the answer to how our nonprofit could best help families this year. We decided on doing gift cards. That way, families can decided for themselves what is most needed and can use it for things like gas, meals, hotels, bills, etc.
Our goal is to be able to provide gift cards for families staying in the hospital. As with our previous Giving Tuesday events, donations made through our fundraiser will be matched until the Facebook amount pledged of $7M has been reached. Thank you so much in advance.
November 26, 2020:
Happy Thanksgiving!
"As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them"
November 21, 2020:
Nick is out of the hospital and getting back to his old self!
Best birthday gift I could have asked for and definitely worth celebrating!
"Every day of your life is a special occasion"
November 20, 2020:
Jimmy reported:
"Settled in upstairs. Got up here at 7, they started shift change so took a while. Started his feeds, gave him Tylenol. Still on IV. Plan is to continue feeds till midnight. At that time do eval, take off presure dressing, walk around, and get ready for bed "
A big thumbs up from our groggy little warrior!
"I am the storm"
November 20, 2020:
Nick was still sleeping and appears he had a good night. The doctor just stopped by and did an evaluation and explained that the cath will be about 4 hours. Points of interest are to check pressures to potentially close the fenestration (the intentional hole placed during his last surgery), check left pulmonary artery (this was the repair done emergently which required the second immediate open heart last time), check for collaterals that need to be coiled (abnormal blood vessels that can make the heart work harder), and just overall general "checks".
Nick's heart cath is scheduled for 11am EST so he'll be wheeled down to the surgical prep area soon. Saying "I love you, see you soon" and having to leave your child is beyond difficult. Those last moments together replay over and over as you are led to the waiting area where you'll be given periodic updates.
And so now, we again wait....
November 19, 2020:
Jimmy took Nick to the hospital. I'm left with AJ, Jo, and a full fridge to stuff my emotional eater void. Waiting for the unknown is excruciating torture that seemingly alters time to a slow crawl.
Sticking with our pre procedure night tradition, we got Nick another set of legos to keep his mind busy. Hoping the boys have an uneventful and peaceful night.
Thank you for your continued prayers.
November 18, 2020:
We made it to Michigan yesterday and are settling in to our temporary home for the week. We decided to rent a place which is conveniently near the hospital. Nick will be headed in Thursday night for a heart cath which is scheduled for Friday. Until then, we will be lounging around, drinking hot cocoa, and enjoying an early preview of our favorite Christmas movies.
I'm trying desperately not to get my hopes up but its nearly impossible to not want to move forward from Nick's last surgery. There have been more days than not, of listening to him struggle to breathe. It's overwhelmingly heartbreaking. With that, the questions creep in of whether this is our new normal or if there are yet brighter days ahead.
The pages of our life's journey have been filled with adventure, sadness, joy, love, and faith. No matter what life has in store for us, we are ready for the next chapter. Praying that we receive God's peace as we relent our own sense of control and feel confident in His plan for us.
"You will never be able to start a new chapter in your life unless you stop re-reading the last one"
November 11, 2020:
Snow Day!!
"What good is the warmth of summer, without the cold of winter to give it sweetness."
November 11, 2020:
Happy Veterans Day to all of our soldiers, both past and present. Thank you for your courage and sacrifice in defense of our freedom.
November 8, 2020:
A little windy today but we're still enjoying one of the last bike riding days of the year.
"Life is like riding a bicycle. To keep your balance, you must keep moving."
November 5, 2020:
Felt like today was a good day for a little Christmas spirit. This is Nick's Christmas wish list for Santa this year.
He wrote the names and thoughtfully drew a picture of himself flying a remote controlled drone. I have connections and will definitely put in a good word with the big guy.
"Life is a precious gift. Use your days wisely."
November 4, 2020:
Today is Heterotaxy Remembrance Day.
The grief in our collective journey takes my breath away. With every shallow breath, I exhale out selfish relief but inhale the overwhelming reality of loss. I can't help but squeeze Nick just a little longer and tighter.
Please take a moment and visit our friends at the Heterotaxy Connection. Their page is filled with the beautiful faces of those that left this earth too soon. We honor and carry them in our hearts today and always.
"If there ever comes a day when we can't be together, keep me in your heart, I'll stay there forever"
October 31, 2020:
Happy Halloween!
No tricks for us today, just treats. Made a pit stop in Pensacola to see James on our way back home to Minnesota. We picked him up some Popeyes, which is one of his favorites, and dropped off the Halloween treat bags the kids made for him instead of trick or treating this year. The Littles got to pick out their treats at Disney Springs earlier in the week. Nick always picks jelly beans.
It's so hard to leave James and I wanted to kidnap him and take him with us. Fortunitely we will see him again in less than 2 months. We get to celebrate Christmas, his birthday, & New Years together. I can hardly wait but we have to first get through our trip to Michigan for Nick's heart cath scheduled for November 20th. I'm praying Nick gets to a better place. In many ways, life post surgery feels more like a setback than forward progress. I'd like him to experience thriving instead of just surviving.
"Don't lose hope. When the sun goes down, the stars come out"
October 27, 2020:
Imperfect or I'm perfect?
"Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections"
October 26, 2020:
We are in Orlando but decided to not do Disney because we didn't want to risk covid exposure, especially right before Nick's upcoming heart cath. We decided we would try to do mini adventures instead like going to Disney Springs, picking out crystals from Old Town, and walking on the beach, provided that they were not busy.
So today we ventured out to Disney Springs and the crowds were perfect because they were non existant. They did temperature checks for anyone going in and required masks for everyone over 2 years old. We stayed just long enough to grab some candy treats from Goofy's shop, wash our hands and pick up some gifts from our favorite smell good Basin store, and cool down from the Florida heat with the taste of a Dole whip.
Disney magic and happiness comes from being together. "Any day spent with you is my favorite day. So, today is my new favorite day" -Pooh
October 24, 2020:
"Live a life you don't need a vacation from"
October 17, 2020:
Guess who we got to see today, James!!!
It has been quite the ordeal to see him today but we finally got to give a few hugs and have lunch with him. We didn't get to have a long visit because he's still in training, but it was so nice to see him in the flesh. We are planning on spending more time with him during his Christmas leave. Because James is locked down due to Covid, we will be headed back to Florida for that visit where we will be able to spend some quality time together.
We are headed to Orlando for a quick mini vacation before Nick's next procedure. We have a November 20th date set for Nick's heart cath in Michigan. Hopefully they can partially close the fenestration to increase his oxygen saturation. He is on oxygen daily and we have our fingers crossed for getting Nick to a new normal that allows him to be able to play with his brother and sister for longer periods of time.
We are going to soak up the sun and get some much needed relax and recharge time in. Allowing ourselves to get recentered in being enough. Giving ourselves the break of doing enough. And finding graditiude for having enough.
Wishing you all a great weekend and hoping you find some time to relax.
October 10, 2020:
Oh my gourd, our little pumpkins!
Children grow up so fast. And as much as I want to freeze them in their youth, the beauty is in the change.
I've had so many ideas of what my life should look like. Those visions can easily become a trap and false measurements of happiness. I think that's why I love Autumn so much. It reminds me to appreciate changes, let go of the past, and carry a renewed sense of graditude.
"Life starts all over again when it gets crisp in the fall"
October 9, 2020:
Burning firewood, warm drinks, oversized sweaters, and colorful leaves dancing in the air like confetti of joy. Fall time is magic.
"Those who don't believe in magic will never find it"
October 2, 2020:
Happy first Friday of October!
We did some indoor trick-or-treating and got our candy ready to watch the SpongeBob Halloween special tonight.
Wishing you all a sweet weekend.
"When life is sweet, say thank you and celebrate. When life is bitter, say thank you and grow"
September 29, 2020:
Today is World Heart Day. A day dedicated to raising awareness for heart health.
Heart disease and stroke are the world's leading cause of death and claims over 17 million lives each year. Take time to learn about risk factors and prevention.
Today, be good to yourself. "Self care is so important. When you take time to replenish your spirit, it allows you to serve others from the overflow. You cannot serve from an empty vessel"
September 26, 2020 posted:
"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain"
September 10, 2020 posted 8:17pm:
"We cannot change the cards we are dealt, just how we play the game"
September 9, 2020 posted 2:05pm:
The kids had to get their immunizations updated before school. The principle made it a requirement and she is hard to deal with. She is me.
AJ got 1 shot, Jojo got 2, and Nick had to get 3 shots. On the first official day back to school, the kids found out they got the same teacher as they had last year. They seemed pretty happy about that, Daddy homeschool for the win!
Happy school year to all the students and teachers. Best wishes for a productive year despite any hurdles, hardships, or hybrids that many will face.
"There are two educations. One should teach us how to make a living and the other how to live"
September 1, 2020 posted 9:27pm:
We've distanced ourselves from being in the hospital and are settled into being home. The kids are enjoying playing on their playground and picking the vegetables we planted before we left for Michigan. Jimmy and I have been busy replacing 2 decks and reorganizing everything inside the house.
Nick is doing as well as expected. He is physically the same as before surgery as far as his stamina. He still gets extremely winded from very little physical activity. Honestly, its been heartbreaking to watch. It's not that his labored breathing is new, it's that I told him that after his surgery he could look forward to running around after his siblings without getting tired. That promise seems such a distant reality, one that I'm not sure we'll ever get to witness.
We have another month at home before we head out on the road again. We plan on traveling to Florida to visit James in Pensacola. We haven't seen him since he shipped off to Army basic training in May. Fortunately we've been able to video chat but I can't wait to physically hug him and tell him how proud we are of him.
After our visit with James, we plan on spending a few weeks in Orlando before heading back up to Michigan for our scheduled follow up appointment. Hopefully it's just a regular checkup and we can plan ahead for Nick's next heart cath and attempt at closing the fenestration again. He will also need another MRI at that time, there was evidence seen from his last scan of a hemorrhage or stroke during his cardiac arrest episodes from surgery.
We are still pretty shaken by how close we were to losing him, but he is still here. And despite it all, we are grateful and our hearts are full, and so is our bed
"If you want to find happiness, find graditude."
August 22, 2020 posted 8:15pm:
They might not look like much at first glance. But those thin little wires were inside of Nick keeping him alive after his last open heart surgery. Feeling incredibly grateful as we take inventory of all of our blessings.
"Life is a series of thousands of tiny miracles. Notice them."
August 20, 2020 posted 1:19pm:
Today was the Viner Family Turtle Race Off!
A Big thank you to our niece Elizabeth for getting the kids their Kiwi boxes, they love them almost as much as we do! This box was all about pull force.
"Your speed doesn't matter, forward is forward"
August 17, 2020 posted 4:39pm:
If only you could hear a picture!
"The most wasted of all days is one without laughter"
August 15, 2020 posted 6:13pm:
The kids had a great time during the mini car parade. Thank you to everyone who made it and to all of our prayer warriors who were with us in spirit! A special thank you to Aunty Tara for putting this together for us
"Life isn't meant to be lived perfectly, but merely to be lived. Boldly, wildly, beautifully, uncertainly, imperfectly, magically lived" and CELEBRATED!!
August 15, 2020 posted 10:20am:
Every day Nick heals a little more and gets closer to forgetting the pain and trauma of being in the hospital.
Grandma got Nick a yard sign and we are going to surprise him with a small car parade of friends and family later today. His heart may be broken but we always do our best by giving him ours.
"The best things in life are the people we love"
August 13, 2020 posted 4:49pm:
We are on the road to recovery and on our way back home to Minnesota! We decided that our journey might be better defined as an Odyssey: "A long series of wanderings or adventures, especially when filled with notable experiences, hardships, etc"
"You were given this life because you were strong enough to live it"
August 11, 2020 posted 7:14am:
These pictures are exactly 5 years apart and we are coincidentally in the hospital. The emphasis isn't that we are in the hospital. The point is, 5 amazing years have spanned between them.
"The right perspective makes the impossible possible"
August 10, 2020 posted 8:50pm:
It has been a long and challenging day. But we live to fight another day and that's all that matters right now.
Nick is still on track for discharge tomorrow morning. I'm just anxious to see him in person instead of just video chatting. We ended up telling him they didn't quite fix the hole but that we have several months before they have to try again. He seemed to take it well knowing that we get to go back home and do some "normal" things for a while.
They made some slight changes in medications and we may need to do a Holter monitor to observe his heart for arrhythmias. During the cath he was solid but apparently before the cath there were some which were observed. With the data from the monitor, they can make additional adjustments to medications if necessary.
We are allowed to go back to Minnesota without the one week followup. We just need to get labs drawn in a few weeks and sent over from home.
Not entirely certain of the next cath date but time frame of 3-6 months was mentioned. But for now, rest for the body, mind, and spirit.
"The comeback is always stronger than the setback"
August 10, 2020 posted 5:20pm:
Nick is done. They are waiting 15-30 minutes and will transport him back upstairs to the step-down room for the night. Jimmy is calling later with more details when they get to the room. Couple quick notes I picked up before Jimmy had to go with Nick.
Seems they didn't close the fenestration because the pulmonary pressures were too high. They did close off 3 more collaterals. They did not have to balloon or stent the left pulmonary artery since it looked good.
All of that to probably maintain 75-83 oxygen, which is the same as precath. Looks like we will wait some more months for him to grow and adjust to the new pressures. He will stay on supplemental oxygen at night and as needed. We know we will have to revist and try again but it's a little too disappointing and overwhelming to think about that now.
More updates to come...
"I survived because the fire inside me burned brighter than the fire around me."
August 10, 2020 12:08pm:
Nick had a good night. For dinner Nick ate some of his favorite foods; broccoli, fries, and vanilla ice cream.
They got an IV line in and drew labs from it without any issues and on the first try. Nick scored a cool Woody doll as his poke prize. This is why we do an annual toy drive for the hospitals. We know how much a toy or art project can help with distraction and overall morale. We've personally benefitted from these little prizes many times during our stays. We kind of joke about how many duckies we have because he usually picks one out after blood draws.
Nick woke up to a special birthday sign made by the nurses and a telescope with a bow waiting for him this morning. The nursing staff is second to none and a big reason we decided to come back to Michigan. Anyone who has spent time in the hospital knows that nurses make all the difference.
Nick also got to open up a present we brought along for him. The plan was to have him open it after the cath but I think he was getting nervous and the present served as a good distraction. Jimmy took him back and waited with him until he fell asleep. Now the waiting game begins. It will be several hours before we know anything. Nick has an MRI for his head first and then the cath. Praying for Nick and his entire medical team.
"Strength doesn't come from what you can do. It comes from overcoming the things you once thought you couldn't."
August 9, 2020 posted 5:04pm:
Getting all decorated for Nick's birthday tomorrow and settled in the hospital room for the night. Jimmy took Nick for this admission and admittedly, it kinda kills me. I really wanted to give Nick some choices so he could have a sense of empowerment and control. It's difficult because that means as a parent, I also needed to relinquish some of my own control. So, Nick wanted Daddy to go with him this time. This will be the first procedure that I am not with him and I made a shameless last ditch effort to ask him one more time before they left, can't blame a mom for trying.
Tonight should be relatively uneventful. There will be a covid test and an IV placement.They might run some labs to make sure everything is still on track. In the middle of this week and the birthday celebrations, we were also monitoring a slight fever that Nick developed. He also told us the sides of his stomach hurt a little and raised an additional flag since this was a new symptom. As a precautionary measure, we brought Nick to the hospital for a blood draw and an ultrasound of his stomach and kidneys. The results ruled out infections and we were still cleared for the Monday cath.
Sending wishes and hugs for a fun filled night of special Daddy and Nick time. Hoping and praying for the successful completion of the MRI and cath procedure without incident.
"Where there is hope there is faith. Where there is faith, miracles happen"
August 5, 2020 posted 5:01pm:
AJ's golden birthday is Friday and Nick will be admitted into the hospital the night before his birthday which is on Monday. So this year, we decided not to wait and have a party today. This way the kids get to have some extra time with birthday toys and we get to celebrate with a few extra party days.
Normally we would go all out for the boys' birthdays. Jimmy and I always take extra care and time to plan out their handmade cakes and party theme decorations. As we all know, 2020 had other plans. Covid19 related inconveniences of being stuck in the RV and not being able to celebrate with family and friends and the multiple hospital stays has made things a little interesting to say the least.
All is not lost because we have added perspective this year. Not long ago, I didn't know if Nick would make it through to another day let alone make it to his next birthday. I had many nights that I questioned if we would ever be able to leave the hospital with him again. But here we are, celebrating each other and being together.
We've been busy with oragami crafts, drawing and coloring, painting faux stain glass projects, constructing legos, making DIY lava lamps, making homemade ice cream by shaking in a bag, watching movies, playing with birthday gifts, and eating cupcakes. And guess what, tomorrow, and the next day, and the next day, will all be more of the same! Hooray!
"It is not joy that makes us grateful, it is graditude that makes us joyful"
August 2, 2020 posted 2:50pm:
We are exactly one week away from the precath overnight stay at the hospital. One week of peace before we have to tackle Nick's (and our) hospital anxiety.
The time away for Nick to heal at home has been amazing for all of us. He is almost 100% back to his old self. He gets up and walks around on his own. We are always only a step or two behind him just in case.
Nick is still on sternal precautions so we have to be cautious with things like the amount of weight he puts on his arms and not picking him up under his arms.
We have oxygen here for support if Nick sats under 70. That doesn't happen very often and even at nighttime he doesn't really need it. Nick gets the most rowdy when the kids play Mario party so I put oxygen on him as a precautionary measure.
I'm so glad to have another hospital free week but I'm also anxious to get on the other side of the catheritization. We'll have a few more days of healing from the cath procedure but the hope is that the repairs will increase his oxygen saturation and we can finally put all of this surgical drama behind us. We can finally settle into a new normal.
We get asked often if Nick will then be "fixed" and the answer is no. Although his new circulation will provide him with the closest thing to normal function for his anatomy and give him a better quality of life, he will never will be cured/fixed. We have to take that in stride because living in constant fear of that reality is overwhelming at best.
There are some truths to face. None of us are guaranteed to live a happy life. None of us are guaranteed to live a fair life. None of us are guaranteed to live a long life.
But that's only the beginning to understanding those truths. We choose to either concede or conquer those truths. That battle is constant; we can be confronted for a decision multiple times in a single day. But we continue to pick ourselves up, dust ourselves off, look those truths straight on, and strive to only give our power to changing them.
"May your choices reflect your hopes, not your fears" -Mandela
July 26, 2020 posted 4:11pm:
We are trying to keep busy inside since it's a sauna outside today. Nick is much more active and gets up multiple times to walk the length of the RV. He was coughing up some blood yesterday and we immediately consulted our cardiologist. We made some modifications to his medications and he seems better today.
The items Nick picked out the other day for getting labs done at the hospital were toy instruments. You know what that means, family band time! They might need a little more practice before their first touring debut though.
"Music is Life. That's why our hearts have beats"
July 23, 2020 posted 5:01pm:
Checkup with Dr. Al-Khatib went well. Nick unfortunately had to have labs drawn after all. Jimmy made it up to him by stopping to grab some toys for being so brave on their way home.
Heart cath is still planned for the 10th. There are probably a gazillion other things we would rather be doing on Nick’s birthday but I am also anxious to get this all behind us to start our journey back home. During the cath they will focus on the pulmonary pressures, dilating the left pulmonary artery, closing the fenestration, and searching for additional collaterals.
I nonchalantly reminded Nick that we have one more procedure to go and he said he already knew. Hopefully we can pull off doing a little something special for him while he’s in the hospital.
We are going to just enjoy the next couple of weeks with no hospitals or procedures, just family and fun.
“We were together. I forget the rest.”
July 23, 2020 posted 11:33am:
Nick has an echocardiogram and cardiology appointment today. The initial date for the cath was set on Nick’s birthday and the final date will be confirmed today.
We’ve been home for a week and Nick is almost completely back to his old self. He isn’t 100% stable yet but he doesn’t need assistance anymore. We still walk behind him but he doesn’t need us to actually walk.
Nick is so aware of his body and what is happening to him. We never lie to him and prepare him the best we can. We told him that his appointment today was just going to be a checkup and that he wasn’t getting poked. It’s just going to be the “goo and pictures” and maybe the “stickers” for the ekg.
We will tackle prepping Nick for the cath but we have a little time before then and a couple of birthdays to celebrate. It’s AJ’s golden birthday on the 7th and Nick will be turning 5 on the 10th!
“I don’t have birthdays, I level up”
July 21, 2020 posted 10:03am:
Nick has been fighting since the day he was born. He’s not a survivor, he’s a warrior
July 20, 2020 posted 10:43am:
“Healing is an art.
It takes time.
It takes practice.
It takes love”
July 19, 2020 posted 8:01am:
“Happiness is a warm puppy”
July 18, 2020 posted 3:01pm:
“I'm still standing better than I ever did.
Looking like a true survivor, feeling like a little kid.”
July 17, 2020 posted 5:54pm:
I spy with my little eye something different about our family
We proudly present Griffin Viner! We added a rescue puppy to our family
“You can never go wrong with adding a dog to the story”
July 17, 2020 11:27am:
Nick woke up last night a little upset. I can’t help but wonder what nightmares he must be having. We comforted him back to sleep and all seems right again today. Nick continues to show improvements and he gets stronger every day.
There is a tentative date on the books for his cath for August 10th. It happens to also be Nick’s 5th birthday so they might change the date if they can.
“It’s not about the cards you’ve been dealt. It’s how you play your hand”
July 15, 2020 11:22am:
We’re officially out!!
Nick was so overwhelmed and excited to leave that his eyes were filled with tears.
Time to go decompress and get some much needed time between us and the memories of the hospital.
“Home is where you hang your heart”
July 14, 2020 posted 10:16pm:
The past couple of weeks are kind of a blur. Minutes, hours, and days all began to blend together. We survived on adrenaline and stress. We combatted the roller coaster of emotions and lack of sleep with copious amounts of coffee. It was never strong enough to wake us from the nightmare we were living though. We were constantly holding our breath and feeling our hearts beating out of our chests with an uncertain fear.
It was difficult to compartmentalize what was happening because we were consumed with just surviving. We were barely hanging on and weren’t being brave, or strong, or anything other than existing and going through the motions.
We had to endure watching our son teeter on the brink of death. He literally died and had to be brought back multiple times. We were helpless and couldn’t fight for him because it wasn’t ours to fight. We were spinning with no control to stop any of it.
My faith was tested beyond anything I could have imagined. I had to concede any delusions of control and, as difficult as it was, find a sense of peace to whatever the outcome. I had to come to terms with whatever God had planned for Nick.
I am incredibly grateful that I get to rub noses together with Nick as we say “nuzzle nosies.” I am beyond blessed to be able to kiss him on the forehead and tell him “goodnight.” And now, in this moment, I am finally able to let my soul sob in relief. Thank you for all of your thoughts and continued prayers. Thank you to all of the medical staff at HDVCH. Thank you God for watching over Nick.
“Some people grumble that roses have thorns; I am grateful that thorns have roses.”
July 14, 2020 posted 9:44am:
Tomorrow is the big day, we’re getting discharged! We are just modifying a few medications to go home on and getting all of our medical devices in order.
Nick is beyond ready to get outta here. He cried big tears when we told him we are leaving tomorrow. They didn’t flow because he wasn’t happy, but because he wanted to leave today instead. I can hardly stand to wait to see him as we leave tomorrow. It’s been one hell of a ride getting to this point that it all feels so surreal.
The cardiology team is working on fitting Nick’s cath into their schedules in the next couple of weeks. We’ll find out that date later. I’m just thankful for whatever time we get to have away from the hospital. It will be such a needed break for all of us.
“I did not come this far to only come this far”
July 13, 2020 posted 2:31pm:
Life is like Sunshine & Ice Cream. Eat it before it melts.
Talk of discharge mid to late week...
July 13, 2020 posted 7:35am:
We are waiting for rounds and the possible verdict on whether we are going to do the cath this week or be discharged.
Regardless of the decision, we planned on taking Nick outside into the garden area today. This will be his first time out of the hospital in 19 days. So excited to get him some freedom and fresh air. Plus, a little birdie told me that there’s an amazing ice cream shop on the way outside. Sunshine and ice cream have incredible healing powers too.
“You are my sunshine”
July 12, 2020 posted 10:39am:
We moved to the step down unit today! Even though it’s only 7 doors down from the PICU room we were just in, it’s a huge accomplishment. And Nick walked the entire way to his new room.
The talk now is to possibly let us go home for a while and then come back for the cath. As long as Nick is doing well with his oxygen saturations, it might be preferable to wait so his heart from surgery can heal before having another procedure. We did drop Nick’s oxygen to 1/2 liter and he’s holding steady. There’s even talk that even if his saturations are low we could probably get portable oxygen for at home.
Although we would have to come back, leaving here would be an amazing achievement for Nick. He does know that if we get to leave, we still have to come back for one more procedure. We will deal with that challenge when that happens.
Fingers crossed, we might be breaking outta here in a day or two.
“It always seems impossible until it’s done”
July 11, 2020 posted 9:04am:
There was a question as to the function of the left pulmonary artery and Nick’s anatomy prevented an unobstructed view on an echocardiogram. The CT yesterday showed the left pulmonary artery is smaller than the right but did not appear to effect the function with even flow into the lungs.
The baffle fenestration is quite large and appears to be the main contributing factor to Nick’s low oxygen saturations. This is the intentional hole placed during the Fontan to help the body adjust to the new pulmonary circulation pressures. This “hole” is then closed in a catheterization or sometimes they close on their own.
Great news is that we don’t have to open his chest again for surgery. A trip to the cathlab to partially close the baffle to a moderate leak should be sufficient and immediately impact his saturations. They will be reviewing schedules and Nick will probably be heading in sometime next week. An MRI will also be done while he is sedated for the cath to rule out any brain damage caused by his cardiac arrest episodes.
The impact the contrast used in the CT scan was a concern because of the kidney injuries from the prior cath and surgeries. The lab results this morning showed that there was no impact. We ran additional IV fluids post CT which seems to have helped. We will stay in the ICU for one more day as a precautionary measure but should move across the floor to the step down tomorrow.
Lots of amazing news today. The only bad is that we are still here but we can definitely handle that. We still have some work to get Nick stronger and get him back to playing and just being Nick.
Thank you so much for your positive thoughts and prayers.
“Our greatest glory is not in never falling, but in rising every time we fall”
July 10, 2020 posted 9:42am:
CT completed. Nick did so great he didn’t need extra sedation because he follows directions so well. A big thank you to the medical professionals that trust and work with parents in the child’s best interest. They said it’s a rare thing to not have to sedate a 4/5 year old for the scan.
The same sentiment was always commented when Nick was intubated. When he would start coming out of sedation, we could reason with him to not try and pull his breathing tube out. We just let him know it was there and it was okay to touch but not pull out and he never did.
Something so seemingly trivial as brushing teeth is something to behold in our world. This kid amazes me every day and I often wonder what we did to deserve such a creature
Hoping we get something today but the process is a little more complex and we might not get anything back until tomorrow. I would like to say we are patiently waiting for results but it’s more like silently freaking out and anxiously waiting.
July 10, 2020 posted 7:32am:
Last minute change and we didn’t get the CT yesterday so we watched movies, played games, and went on a couple of wagon rides. They got a good IV line in last night and Nick is on his way down for the CT now. Jimmy is allowed to stay with him during the entire scan which really helps calm Nick’s anxiety.
More waiting around today. Remaining hopeful that the results will show only a need for a visit to the cathlab and not require a third surgery.
July 9, 2020 posted 8:41am:
“Ayyyy”
Nick has to get an IV in today so he can go get his CT scan done. The results are going to tell us where we are going from here. Nick is doing better today as is a li
July 8, 2020 posted 7:06pm:
“Life is tough my darling, but so are you”
Nick showing off his muscles
July 8, 2020 posted 9:39am:
There is so very little Nick can control. He doesn’t get a say on when and how he gets moved, bathed, fed, poked, prodded, and touched. Nick is expressing his pain, frustration, and sadness when they manifest as stubbornness or anger. God only knows everything he is feeling or going through.
We are working on channeling his anger into motivation to keep moving forward. As difficult as it is to see Nick so upset, I’m glad he is. It means he’s still fighting. I’ll be the bad guy if it means he keeps making progress.
As of this morning, the team is to discuss a clear plan for Nick tonight during their weekly cardiac meeting. We should know something tomorrow morning if we are headed into the CT or if they want to just move forward with the cathlab.
Today we will work on increasing his feed volumes. Continue weaning off medications. I believe we are also going to take his central line out from his neck and put in an IV. Continue PT, speech, and respiratory therapies.
“I may not be there yet, but I’m closer than I was yesterday”
July 7, 2020 posted 9:09am:
“My favorite place is inside your hug”
Things we are doing today and tomorrow:
•We are starting to feed Nick very small quantities in his gtube separate from his IV nutrition.
•Continued weening from medications, today we are working on coming down on morphine.
•Continue working on sitting up and PT work. Increase out of bed time, mostly in our laps. He isn’t strong enough to sit up by himself yet and he is still medicated a bit.
•Working with respiratory to get junky stuff moving out. Encouraging big breaths and more lung movement.
•Continued urine and bowel movements
July 6, 2020 posted 8:08pm:
We got Nick out of bed for the first time today. He is really not liking anything or anyone. Besides that, he is doing well. He is still on oxygen but they shut the nitric off today and his saturations have continued to hold steady. We have been working with respiratory because his lungs sound a little junky.
The CT angiogram is scheduled for Thursday so we are going to just rest up until then. It will not be super invasive and will only require an IV line to inject the dye. From the images, they should have a better idea of what the next steps will look like.
Before bedtime, I got a “I love you too” as a response from Nick. It might have just been a reflex and he forgot he was supposed to be mad at me, but I’ll take it. It made my entire night. Hoping for another restful sleep.
“I am the Storm”
July 6, 2020 posted 5:43am:
The big win yesterday was being extubated. When they went to check to hear for a leak, there wasn’t a great one. The decision was made to try anyway based on all of his trends. Nick switched over smoothly. That was basically the only change we had. The rest of the day was to maintain status quo.
Nick is still pretty upset. He obviously prefers the nasal cannula to the ventilator but he is not quite himself. We did our best to try and get him in better spirits. Every now and then we would get a glimmer of the old Nick. Physically he continues to heal every day but he is mentally and spiritually exhausted. I think the medications are also contributing to his inability to bounce back as fast, we are seeing some initial signs of withdrawal.
Today at rounds they will more than likely discuss the next steps. We probably have 3 paths at the moment; continue as is for a while, move forward with the CT angiogram, or go into the cathlab. More to come later.
The goal for us is to make Nick comfortable and try to give him some hope and happiness. We talked about bringing in the hospital support dog to see if that might help. Nick has been fighting fiercely for days and is tired. Now it’s our turn to carry his burden so he knows he is fought for.
“What's broken can be mended. What hurts can be healed. And no matter how dark it gets, the sun is going to rise again”
July 5, 2020 posted 8:23am:
And it’s out, extubated!! We are just reveling in this moment and enjoying the win
“Accept the challenges so that you can feel the exhilaration of victory”
July 5, 2020 posted 5:08am:
So our Fourth didn’t go completely to plan. Nick did get his pacer wires out and checked that everything was good on the echo. Pictured is Nick helping the tech as he was watching his heart beating on the monitor. They also took out his Foley catheter (urine). Most of Nick’s medications have been transitioned from IV drip to enteral.
We then went to take out his ventilator tube but before that happened they checked his blood gas levels twice, they were both good. They then checked to hear a leak before extubation, nothing. There has literally been a leak everyday except on the day we needed there to be one. This isn’t a negotiable item since it indicates swelling and we can’t risk his airway closing.
Needless to say then, Nick had another rough day. He was super sad because we couldn’t take the tube out. I asked him if he was upset and his tear filled eyes couldn’t even look at me. Then when I asked him if he wanted me to leave and be with just Daddy, he shook his head no.
His happy spirit seems almost broken. He cries about missing his siblings and is just so over being in the hospital. Who could blame him. So it was another long day of convincing him he’s doing great and that we are making progress. Today marks our 12th day in the hospital Including one pre-op day.
We put Nick on some steroids to reduce inflammation and hopefully hear a leak and try again. Everything else is great and has been cleared, it’s just his airway now. Hoping for some good news on the ventilator front this morning. I honestly don’t know what I’m going to do if he can’t get it out. We’ll cross that bridge if we have to. Fingers crossed that the next post will be Nick without the ventilator.
“A river cuts through a rock not because of its power but its perseverance”
July 4, 2020 posted 4:53am:
Thank you so much for all of your words of encouragement yesterday. I showed Nick the pictures, videos, and read him the comments. I think they helped. He was getting very emotional and I could see him fighting back his tears and his poor little lower lip quivering.
Later we are going to be taking pacer wires out and checking with an echo to make sure there’s no bleeding. And the big plan for today is that we will be taking Nick off the ventilator and switching to a cpap for the delivery of the nitric oxide and oxygen.
Nick has been weening off of oxygen. He has been breathing entirely on his own breaths since yesterday. I understand that medically it made sense to just keep Nick intubated but there is something to be said about what removing the tube in his nose will do for his morale. He was extremely defeated yesterday and knowing we have more procedures in our future, it was important that we’re able to give him at least this.
All the doctors, surgeons, and nurses in the world may be better educated and knowledgeable in their areas of study but no one will ever have Nick’s best interest or advocate for him the way we, his parents, will.
So as we celebrate America’s independence today, we are also celebrating our own freedom from the ventilator. Wishing everyone a blessed, happy, and safe Fourth of July!
The picture was right before surgery. We wanted to let the kids do some sparklers together knowing that Nick would be in the hospital for the Fourth.
July 3, 2020 posted 9:46am:
Even in the hospital, we do what we can to watch SpongeBob.
I have personally hated this show ever since James (19 now) was little but he loved it then, as much as the littles love it now. If it helps to get Nick’s spirit up today, then I approve. And who knows, I might learn to love it too
Nick seems very sad today so we will just have a day to get his mental state back to normal. If you could, please send Nick some well wishes and tell us where you are from. That way we can tell Nick all the places he has love coming from. Thanks in advance
“A certain darkness is needed to see the stars”
July 2, 2020 posted 4:50pm:
Nick is pretty stable. His kidneys are showing great signs of healing. We got 2 chest tubes removed which means all of them are out now.
Some great things, but overall I am completely gutted. We have taken several steps forward and keep taking huge blows backwards. The plan was to get Nick off of the ventilator by using a medication to act as the substitute to the nitric oxide. We made multiple attempts but he was not able to transition off of it nor could he be helped with increasing the oxygen at lower levels. This is because of the issues that we know needs intervention to resolve.
We are waiting for his kidneys to heal and we’ll be heading in for a CT angiogram. There will be contrast dye which will injure the kidneys. To what degree and for how long is unknown. The CT angiogram will allow visibility to the left pulmonary artery that they were unable to see in an echocardiogram. The result of the CT will determine if open heart surgery is needed or if we can get by with just a heart cath. After Nick’s kidneys heal again after the CT angiogram, we will head into cath or surgery.
Nick will now not be coming off of the ventilator. He will not be coming off of sedation medications either because those things are closing linked. He will live with lower oxygen saturations until the issues are fixed. In order to help him, we will have to hurt him, and then hurt him again. I’m worried about how much trauma we can put on his poor little body before it’s too much.
Nick keeps telling me he wants the tube out of his nose and he wants water. I’ve been telling him soon because he’s doing so great. It was a big milestone of achievement that I really want to be able to do for him. It’s the worst pain to not be able to help your child when they are so desperately asking.
Nick also keeps telling me he just wants to go home. Whew, takes my breath away to even think about it. It’s hard to keep it together and be encouraging for him when I feel so broken. We are spiritually, mentally, emotionally, and physically weary and could use some prayers.
“You can’t go back and change the beginning, but you can start where you are and change the ending”
July 1, 2020 posted 11:48am:
Nick is having a chill spa kinda day.
He got his first dose of Viagra, got his hair conditioner cap on, and tried a couple of new hairdos. He’s looking good
Sildenafil (Viagra) is a medication that is a vasodilator that helps with opening the vessels and lowers blood pressure. This will hopefully lower his bp and help to get off of the nitric oxide. We will do a a second dose about 4pm but so far his bp looks like it’s coming down and his oxygen is stable in the upper 70’s. We should start to ween nitric tonight after we see how he handles the second dose.
Sadly, we got a peak into the future and we know for certain Nick will have to visit the cathlab before we get discharged. The plan is to get him healed before that happens. The cath will be able to either address the fenestration and/or baffle issue or there is a possibility that if the baffle is not able to be fixed during the cath, that he will undergo a third open heart before we can leave here.
Totally crushed with the thought of having to get him well enough to tell him we have to do it again. My heart is at war, trying to reconcile with my mind. I have to compartmentalize my fear of another surgery so that we can support Nick’s current recovery.
“Today is a gift”
July 1, 2020 posted 6:19am:
Another good night. We had a few setbacks yesterday but did some course corrections throughout the night and we are getting back on track.
Highlights from last night: We started gtube feedings to get his gut going. We also took out 2 chest tubes and the catheter in his stomach. He has 2 chest tubes remaining. We removed his line in his groin. We weened down on a couple of medications. We didn’t need a lot of albumin as his body is naturally absorbing more. Nick’s labs show his kidneys are on a good trend. They are just really slow organs to recover.
Things to work on today are going down on the nitric oxide. Ween completely off of a couple of medications. Keep finding a good balance of fluids and supplementing as needed.
Last night Nick woke up and I told him “I love you” and he audibly said “I love you” back! Yup, heart completed melted. Hard not to be motivated to tackle whatever may come today after that.
“Keep feeding your faith until your doubts starve to death”
June 30, 2020 posted 11:05am:
Nick didn’t want me to leave him before surgery. It’s the same plea he tries to scream when he wakes in a panic and is mouthing “mom, mom, mom.” Breaks my heart into a million pieces as I grab his hand and gently rub his forehead to calm him down.
It would make me feel better if he would just yell at me and tell me how horrible I am to make him do these things. Instead, this amazing kid has endured everything we’ve ever asked of him. We are going to be taking a few more thing out today. I think it will be more comfortable and help to have as many things unattached for when he is more awake.
Nick had a great night. First full 12 hour shift with no notable incidents! We didn’t do a ton with his sedation meds. We are down to 1 on nitric and if he continues to tolerate it we will turn it off at about 10am. That was the plan until Nick had other plans so we are back up to 5. It is more complicated than coming up or down on one item. There are several competing factors at any given time and it’s just finding it and as he progresses rebalancing. We are starting to go down on the Epi which is also a good step forward.
We thought labs indicated that his kidneys might have plateaued, as far as injury, so we should start to see some down trending numbers soon but the last set continued to hover. It isn’t worse so we can count that as a win too.
The finish line is at the end of a seemingly long marathon. Some moments we felt like we’re sprinting and at others we are barely walking. We just have to take it one day, one shift, one hour at a time.
This is a picture of a place I like to bring my mind back to when I start to drift away into a dark place.
“You’re allowed to scream. You’re allowed to cry. Just don’t give up”
June 29, 2020 posted 7:38pm:
Day shift went pretty well. We got to remove a few things so now we can see more of his face. Nick still likes to make us panic at least twice a shift with his dramatic desaturations and pressure issues. Since his coding episodes, we are so sensitive and immediately alerted to changes. Any time I hear consecutive dings, my heart starts beating out of my chest.
We have a nurse in our room 24 hours a day. Their shifts are 12 hours from 7:00 to 7:00. We are getting a new nurse tonight and Nick will hopefully settle into the night shift nicely. It’s so nice to meet a nurse and get to have them for multiple days. You gain rapport and trust and they really become a part of your recovery family. It’s actually hard when we know they won’t be coming back because they become so integral in our lives.
Tonight we will work on cutting back on the nitric oxide, we are at 4 and should continue to ween by 1 every 4 hours or so. We will also be looking to cut down on some sedation and see how he tolerates it and behaves.
Still no urgent need for dialysis. His urine output is still great and picked up throughout the day. We did a lab this afternoon and another is being ran now to do a comparison. There is test that uses urine that can help in the decision making process and assist in determining kidney function. It’s a newer test and I’m glad we are cautioning on the side of no dialysis and using more information to support that decision.
We are now 72 hours post surgery. Fingers crossed for another good 12 hours.
June 29, 2020 posted 10:00am:
that is Nick’s heart beating
The pacer is set at 100 as a backup. His blood pressures went up nicely with his own heart and he is holding steady.
Nick is being kept fairly sedated to keep him safe and comfortable.
Notable items for the day:
Kidneys are still a concern. They are doing labs every 4 hours. A decision is probably going to be made so that the line in his groin can maybe be taken out if it’s not going to be used for dialysis.
We are working on his breathing and adjusting his leveles to continue crawling towards removal.
Nick’s chest tube might be removed tomorrow if they don’t drain a lot today. His left tube needs to be moved because it is currently sitting on top and the fluid is sitting behind and below so it’s not draining. Kind of a bummer to have another to put in another incision but removing the fluid will help his oxygen saturation.
There is still a balancing game of adjusting electrolytes and blood products based on his labs. He is tolerating all of the adjustments and tweaks so far really well.
Slow and steady. Easy does it. Don’t rock the boat. Those are some of the main sentiments
of the last few days. It’s still the case today but with a little more of a push as we are transitioning from getting him stable to getting him to the step down unit from the ICU.
June 28, 2020 posted 11:00pm:
We had a pretty good day. Nick was stable for most of it with only a handful of times he would either desat or drop blood pressure. He would recover pretty independently without a ton of intervention.
Nick hasn’t required albumin since very early morning. He did finally get some blood products today but done very slowly because he nearly coded when they started to run one a couple of days ago. This morning at rounds it was discussed that he could use it but everyone wanted to just be very cautious and not rock the boat too much. As the day progressed and he became more stable, we ran it without any issues over 2 hours.
Nick can be woken up with stimulus, he’s demonstrated it multiple times. He is getting stronger and when he wakes he nearly pulls his leads off and even tries to kick to roll himself over. I love to see his feisty spirit but it’s a little more stress for him than we would like and also for safety, we have to keep him a little more sedated.
Neurology cleared us and Nick got his EEG wires taken off today. We did manage to agitate him enough to woke up again but we got him calm and went back to resting.
Still no need for dialysis just yet. He has a port in his groin should we need it but the plan is to keep giving him more time to heal. Nick’s urine output is increasing which is also a good sign.
Bath time, linen change, and body shift will be done in a few minutes. Jimmy and I stay close to help calm him because that will definitely wake him.
We need another restful healing night. Tomorrow at rounds we will discuss what the plans going forward are if he continues to make progress. We are 52 hours post-op (from second surgery) and counting.
“A little progress each day adds up to big results”
June 28, 2020 posted 9:32am:
Confronted against insurmountable odds, Nick is still here. Heart kids are among the fiercest creatures on earth. To know one is to undoubtably admire and love their tenacity, resilience, strength, and courage.
Nick was able to get through the overnight hours without overloading sedatives and stayed relaxed and restful. He went an incredible amount of time before needing fluids (extra bolus). where he was requiring every 2 hours, he went to 8 hours. His stats had continued to hold steady. His kidneys seem to be doing better as his output was about 3 times better than last night.
The plan of giving Nick time to heal on his own seems to be working. That, and his incredible around the clock care team. Our goal for today is to have more of the same and to keep trending in the direction of progress.
Early this morning however, Nick took another dip backwards. Not to the point of coding but his blood pressure dropped rapidly again and it took a little help to get it back up. His oxygen saturations also took a big dip and was slow to rise. Not entirely sure why this happened which is a very uneasy place to be because we again had a false sense of security before it went downhill.
A bit of good news though, after rounds we got to see Nick using his own heart beat and maintaining pressure for about 25 minutes. They reset the pacer wires to a rate of 150 where even though Nick’s rate is about 146 just to give him a little better atrial kick. As we start to back off on some of the medications he is on, we will go back to trying his heart alone. The blood pressure seem to stay higher which is also helping his kidneys to make urine. This was some much needed good news.
Another highlight is Nick’s pee. Heart parents know the significant joys of pee and poop like no other! Jimmy takes special care and pride in monitoring and collecting. This is just a little way we can be involved and by celebrating and hunting for the good things.
A lot of other technical things are happening as well with the monitoring of his labs, medications, and overall fluids but I won’t bore you with the details. Some things have dramatically shifted to support the new Nick of today, what a difference a day can make.
More updates to come as significant things happen throughout the day or night.
As for the parental front, the emotions are ebb and flow. On the one sense there is an odd calmness in all of this chaos and it’s something probably akin to the eye of a storm. In the darkest of hours, we are both the most vulnerable but also most receptive to accepting grace and clarity. A reassurance that no matter the outcome, we can be rooted in our conviction that we are in the exact place we need to be, doing the exact things we need to be doing. I attribute that to all of the many prayers being said on our behalf. They have given us an incredible gift, a strength of spirit. Thank you so much for that.
June 27, 2020 posted 8:21pm:
Update: Nick responds really well to albumin (that’s one of the “fluids” we talk about) His blood pressure can start to slide low and usually a 50ml dose helps to kick it back up which also seems to correlate to his Fontan pressure as well. When he codes, he starts to slide down and then isn’t able to recover. That’s the scary part because there isn’t necessarily a warning. When he coded last night the only variable was that they unclamped his belly tube to drain and the fluid shift seemed to have really negatively impacted him.
Knowing that he needs fluids in to help with his blood pressure, the issue then spotlights his ability to output. This is where Nick’s kidneys are being a little slower to recover from all the stress his body has been put through that last couple of days. We did talk with the nephrologist (kidneys) in the event we need to go that route. The plan right now is to just give him more time to recover on his own. The good news is that he is producing urine, just not a lot just yet.
Nick has been much more awake but since he is still on the ventilator, he is understandably uncomfortable. He is fighting out of sedation which is bad if he is stressed too much but it is also good that we have seen signs of positive brain activity. He opened his eyes a few times and when Jimmy asked if he wanted momma, Nick shook his head up and down purposefully.
At home, Nick throws up on a daily basis so we have worked with him to calm himself with slow breathing. We have been able to use this same breathing technique to get him to calm down when he starts to wake and shake out of sedation. The cutest part is that Nick really exaggerates his out breath and almost makes fish lips, he did the same thing when we asked him to breathe slowly despite being on the ventilator. I think we’re in for a long night if he keeps waking. We have tried a few sedatives to keep him comfortable but some of those can also have consequences and have to weigh every decision carefully.
Jimmy and I are doing as well as could be expected. We take small 20-30 min power naps intermittently. If anyone could dial in a favor and get wine allowed in hospital rooms, that would be greatly appreciated. Just sayin
Nick is doing his Nick thing. He has always done things on his own time. There is an entire team who is here to support him in whatever he needs and we are completely confident in them.
The goal tonight is to keep checking his labs and to continue tweeking his balances. Please pray for a peaceful night of rest and healing.
June 27, 2020 posted 3:40am:
We have been feeling comfortable with Nick’s stats since he came back up from the OR. We just commented it felt okay to maybe breathe for a second.
Almost as fast as it was said, Nick fully coded. They did chest compressions and he needed to have his heart shocked to get him to come back. That is something we will never be able to unsee.
There’s nothing like living on the literal line between life vs death that brings upon a deeper understanding of how beautifully delicate it is. I’m profoundly heartbroken and yet cautiously optimistic.
We can find comfort in knowing that God is love and Nicholas is a direct reflection of that.
We ask that you please continue to send Nick your thoughts and prayers. Thank you for loving our little guy right along with us.
Almost as fast as it was said, Nick fully coded. They did chest compressions and he needed to have his heart shocked to get him to come back. That is something we will never be able to unsee.
There’s nothing like living on the literal line between life vs death that brings upon a deeper understanding of how beautifully delicate it is. I’m profoundly heartbroken and yet cautiously optimistic.
We can find comfort in knowing that God is love and Nicholas is a direct reflection of that.
We ask that you please continue to send Nick your thoughts and prayers. Thank you for loving our little guy right along with us.
June 26, 2020 posted 7:57pm:
We are in the waiting room. Jimmy and I are the only ones left after the front desk person came to tell us she was leaving. We were given instruction to wait for the nurse who said she would be back to update us 1-2 hours later. She was heading back to the OR room and that Nick was going on bypass. 2 hours goes by and we start panicking. 2.5 hours goes by and now I’m a nervous wreck and irrationally pacing. Then we see two people with hospital badges walk up to the front desk area. They poked their heads in and we all made awkward eye contact. Then I took a look at Jimmy and we both immediately had the same thought, these people were brought in as reinforcements to the surgical team because they are about to tell us the worst.
We just waited for them to call. We knew what was coming. A few minutes later, they ended up leaving and I think they were just lost. We were relieved but in such a hysterical state because it literally felt like we just lost him, again.
Then our nurse finally came out to tell us Nick was doing well. The surgeon would come out a while later and breaks things down.
Most importantly though, #1 He is alive.
And after the emotional rollercoaster the last couple of days, we can be happy in just the fact he is alive.
We will see him in the room in a little bit once he gets transferred and situated. This is basically like a do over as far as balancing stats post-op. It will be touchy to keep him stable and comfortable. Things can turn so quickly and without any warning.
Nicks saturations are still not as high as we all hoped and it is believed to be primarily due to a fenestration that will have to be closed through another cath. Not sure if we’ll do it in a few days or if they want to hold off for a few weeks.
Nicks heart rhythms and pacing is still a bit high but seems to respond to added electrolytes. So keeping him balanced with electrolytes will be another factor tonight.
Initial reports of his kidney function seem to be good and he is urinating at good volumes.
Nick’s chest has been closed, so that’s at least one step closer to recovery.
He will still be on a ventilator and heavily sedated as his sick body from surgeries heal.
It’s definitely not going to be an easy battle, but we know we have quite the little fighter on our hands. Thank you for your continued prayers, they have really lifted Nick and our entire family
June 26, 2020 posted 5:41pm:
We were called back pretty quickly to talk to the surgeon and cardiologist. I was half bracing myself because it seemed too short amount of time to be talking with someone. They said Nick remained stable all throughout the catheterization. They found the issue and they were going straight back to the OR and open his chest again. The plan was to have him put back on bypass, but for a much shorter duration than yesterday, to do the repair.
Nick is really complicated, as is heterotaxy in general because it presents so uniquely in everyone. The non technical explanation is that at one of the points of connections, instead of capturing the entire connection, it was split into two because the full structure was hidden and the surgical view was obstructed. This alone was the culprit and could explain the issues we were seeing last night. (Left side Pulmonary vein vs artery anatomy.)
Nick is so strong that somehow he was able to manage relatively good stats while functioning essentially only on one lung. Nick is such a fighter and I know your well wishes and prayers help to lift him up.
Now more waiting. More pushing him and willing him to keep fighting. Screaming inside telling him not to quit, don’t give up, stay strong, you’re almost there sweetheart, and we just want to see you.
“One day you will tell your story of how you overcame what you‘re going through now, and it will become part of someone else’s survival guide.”
June 26, 2020 posted 12:22pm:
In our room, a femoral line was put in and the lower pressure were higher than the upper which might indicate some sort of obstruction or clot. Nick also got a catheter in his belly to alleviate the excess fluids which might also subsequently help his kidneys. He did have a little more output of urine which is good.
We just dropped Nick off to the cathlab which is the same level as surgery. They will look for issues while getting images. They will fix anything that comes up like closing collaterals or it could lead to opening his chest again. Nick has been sedated since yesterday but for a moment he opened his eyes on the way down. It was just enough to let us know he’s still in there. We gave him some kisses, told him to be strong and that he’s going to do great, and that we would see him later.
Hoping to get on the road to recovery to see the little boy who made that LEGO dinosaur before his surgery. Now, we just pray and wait.
June 26, 2020 posted 9:38am:
It’s all a balancing game post-op. Figuring out the right combination of support can be tricky.
We have issues of renal function to contend with today as well. Best case is that they start to improve, worst case is that he’ll have to be put on dialysis. We will get some tests ran and results this afternoon.
We have pressures and fluids to balance. Fluids in to help his blood pressure causes him to swell and with potential issues with kidneys, he isn’t expelling it at a rate to where it’s balance. Diuretics have started to come on board this morning and will continue to be monitored.
Nick is still on a ventilator. They are actually readjusting the tube in his throat right now to go in about 2cm further down. His lungs are still hazy from surgery and we need to get everything else balanced to hopefully get his saturation’s to improve on it’s own.
As they were moving him to get his ventilator tube repositioned, Nick started to tremor a little. He has leads on his head to monitor his brain activity. More fentanyl was given because it was the largest stimulus he has had and he might have just reacted and woke him up slightly.
This is just a very basic overview. There are many technical factors at play but literally is too much to communicate at this time. Hopefully we can get things on track and be able to focus on a fewer number of attention items.
**As I was about to post this update, Nick basically coded. His pressures dropped and about 10 people rushed the room. They are stabilizing him again and looking at getting him in the cath lab. Things are beyond touch and go...
Updates will come intermittently as we get information or as his status changes. Thank for your continued support and prayers.
June 25, 2020 posted 8:36pm:
We finally got back to see Nick after a nurse shift change around 7:30pm. The first sight is always alarming no matter if you’ve seen it before. He comes with some pretty heavy duty hardware and makes the connections in the Matrix look pretty weenie.
A lot is going on to keep him balanced. He does have pacer wires to support a steady rhythm. Fluids are being pushed so we expect him to be a little more puffy looking by tomorrow. Overall he looks pretty steady all things considered under the circumstances. He’s being kept a little cooler and feels cold to the touch but it’s intentional. That’s about the best I have the energy to try and describe at the moment.
We are pretty fried emotionally. We really appreciate all of the continued thoughts and prayers. Hopefully there isn’t anything big to report through the night but both Jimmy and I will be with him.
June 25, 2020 posted 4:22pm:
Jimmy and I just talked with the surgeon. Too much to process so I’m not going to go into great detail... Coming off of bypass, Nick did not do well and desaturated where the expectation was to see saturations in the 90’s.They did an extensive echocardiogram and couldn’t pinpoint a clear explanation. They checked the possibilities with no clear answers. AVMs are suspected but not entirely certain yet. Nick’s anatomy and function is just complex...
They are not comfortable enough with his stability to go straight into a exploratory catheterization. They are going to leave his chest open (plate and bandage to cover) and keep him comfortably sedated tonight. The goal is to get and keep him stable enough to get him into a cath somewhere in the next 24-48 hours.
He had a lot of bleeding which is never good. He will have to stay on a ventilator which is not the best coming from a Fontan. His saturations are staying in the mid 70’s. Not a great measure to compare pre and post stats but he was running low 80’s before.
The good news is that the surgical portion on the heart went well and the pulmonary function looks good. So the hope is that we can find the reason to the other issues and fix or give his body more time to heal.
We are waiting on the ICU floor to be called back to his room. It will be a while before we will be able to go to his room to actually see him.
We are asking for prayers for Nick.
June 25, 2020 posted 12:42pm:
Update: Main part of the surgical procedure is completed. The cardiologist will be doing an echocardiogram to make sure everything looks good before closure. If there are things they identify as needing attention, hopefully they will be easy fixes. If it’s more complicated where Nick needs to go back on the bypass machine, they will get word to me to let me know. Fingers crossed that we are in the final stretch of surgery and he can start his post-op fight to adjust to his new circulation.
June 25, 2020 posted 10:31am:
Updates:
•Surgery started about 9am EST.
•They just put him on bypass (heart and lung machine) at about 11am.
•Everything is going well, just slow going.
•They are cooling his body temperature and will be going in to do the Fontan repair.
•Next update will be at about 1pm.
June 25, 2020 posted 6:57am:
Nick is in the OR getting prepped for surgery. He woke up this morning and the first thing he said was “mom, it’s morning!” Then I think he realized what that meant and started to lightly cry. It took everything in me to not cry with him. We gave Nick another “bath”with the cleansing wipes. We had to swab his nose with cleaner which made his nose a little orange. It was a little challenging and I had to reassure him it wasn’t another COVID-19 test.
We went down to pre-op and were watching Angry Birds 2 to keep his mind off of what was coming. It all happens rather quickly after that; I finished signing the paperwork, they gave him a mild sedative, we started wheeling him towards the OR, we stopped at the door that led to waiting area, I gave him some last minute hugs and kisses, and now I sit and wait.
Having to walk away from him is probably the hardest thing to have to do. No matter how many times we’ve had to do it before, it never gets easier. Trying to keep myself composed as I keep asking God to watch over Nick.
It will take a good hour or so before his surgery will actually start. I will get updates from the nurses throughout the day and will post them as I get information. Thank you in advanced for your continued prayers.
June 24, 2020 posted 7:22pm:
As much as we didn’t want the day to come, it’s almost here. We are back at the hospital prepping for Nick’s third open heart surgery tomorrow morning. So far we did a Covid-19 test and got an IV line in.
The coronavirus test is much harder the second time because Nick knew what was coming. Yikes! Then of course the IV took 2 tries but that seems to be par for course with him. I get Nick to focus on breathing slowly to get him to calm down and now he’s just chilling out listening to his iPad. We will tackle finishing his LEGO dinosaur in a little while and maybe pick out a movie to finish the night.
Nick is the first case in the morning and we will probably start to head downstairs to the surgical level at about 6:30am. Then it’s buckle in time to a excruciating long day of waiting.
It’s been so hard to control the sheer emotion of everything. It’s just too easy to let the thoughts of doubt and darkness to creep in. Every moment with him today, I silently keep thinking to myself, please God don’t let this be the last time.
Please say an extra prayer for Nick and for his surgical team.
“You never know how strong you are until being strong is the only choice you have”
The coronavirus test is much harder the second time because Nick knew what was coming. Yikes! Then of course the IV took 2 tries but that seems to be par for course with him. I get Nick to focus on breathing slowly to get him to calm down and now he’s just chilling out listening to his iPad. We will tackle finishing his LEGO dinosaur in a little while and maybe pick out a movie to finish the night.
Nick is the first case in the morning and we will probably start to head downstairs to the surgical level at about 6:30am. Then it’s buckle in time to a excruciating long day of waiting.
It’s been so hard to control the sheer emotion of everything. It’s just too easy to let the thoughts of doubt and darkness to creep in. Every moment with him today, I silently keep thinking to myself, please God don’t let this be the last time.
Please say an extra prayer for Nick and for his surgical team.
“You never know how strong you are until being strong is the only choice you have”
June 21, 2020 posted 10:27am:
Happy Father’s Day!!! Celebrating Dads today!!!
My children and I would not be the same without Jimmy. So humbled and grateful to have one of the great ones
“A good father is one of the most unsung, unpraised, unnoticed, and yet one of the most valuable assets in our society.” - Billy Graham
June 13, 2020 posted 9:51am:
An uneventful night and 6 bandaids to cover up the IV and catheter lines... we’re breaking outta here!
“If you want to change the world, go home and love your family”
“If you want to change the world, go home and love your family”
June 12. 2020 posted 7:08pm:
We finally made it back up to our room. Nick doesn’t like to come out of anesthesia well. When he was just a little baby coming out of surgery, they ended up breaking their normal protocol and let me hold him to calm him down. The nurses had maxed out all of the available narcotic doses and Nick was still screaming.
Today when I was getting briefed, the first thing I was told was towards the end when Nick woke up a bit, the anesthesiologist told him to relax and Nick told him “No, I won’t relax!” Needless to say, they ended up giving him a bit more meds.
I was able to be with him when he woke up again and he was not a happy camper. We managed to calm him down enough for him to protest being there and demand to go upstairs to his room. We struck a deal and told him as long as he kept his legs flat we could go up. The goal is to keep him flat for about 6 hours. 6 hours of keeping a 4 year old laying flat when they don’t want to, piece of cake!
The doctor said they got a lot of images. He even showed me the coils they put in and how it blocked the blood flow. 4 were put in the right side and 5 put in the left. He said that Nick’s pressures immediately improved from 12 to a normal level of 18–19 and there would be an immediate relief from the extra work his lungs and heart had to do. Either we do surgery soon, within weeks, or we push it out and set a time within months. The doctor wants to discuss it with the surgeon and they will let us know more early next week. So more waiting for now on the surgery front.
As long as Nick remains calm and everything looks good in the scan tomorrow, we should be discharged early in the morning to enjoy the remainder of the weekend. Fingers crossed for smooth sailings from here on out. Thank you all for your continued prayers.
“Hey little fighter, soon things will be brighter”
June 11, 2020 posted 9:31pm:
Hospital Jammies
June 11, 2020 posted 7:34pm:
Settling into our room, this place is all too familiar. We got Nick some special LEGO sets just for him. It was the first thing he wanted to do when we got here. I think he was really enjoying the fact he didn’t have to share for once.
So far Nick has gotten a covid nasal swab. He did really well but could tell it was a little uncomfortable. We joked with him that it might have hit his brain. Test already came back negative.
We still need to get Nick an IV line put in. We agreed at attempting 2 times tonight and if it was unsuccessful to get one in before his procedure tomorrow. He currently has numbing cream on his arms in preparation of the first attempts to hopefully help ease any discomfort.
We just plan on hanging out for the rest of night. Maybe do some coloring, maybe have a little iPad time, and watch a couple of movies.
We’ll be the first case tomorrow morning so hopefully we can break outta here by the afternoon if everything goes well. The last time Nick went in for a cath, we were in the hospital for a week. Fingers crossed that doesn’t happen this time.
“Life is tough my darling, but so are you”
June 9, 2020 posted 2:41pm:
As they say about best laid plans...
Jimmy took Nick to his appointments today. Nick had an EKG, echocardiogram, and a checkup with the cardiologist. Dr. Al-khatib is one of the biggest reasons for our decision to come back to Michigan for Nick’s next surgery.
Nothing was overly pressing, as far as immediate need for interventions, but the decision was made to extend our stay here in Michigan. The plan is to admit Nick Thursday night for a heart catheterization for Friday morning. This will provide the most clear images of his heart and the ability to also address and coil his collateral arteries.
What we know is that Nick’s heart is dilated which means that his heart muscle is weakened and cannot pump effectively.
We know that Nick’s small leaky valve is now a moderate leak which will be fixed during the next surgery.
We know that Nick is on the small side (1 percentile for weight) and it’s preferred that children be bigger.
We know that Nick is definitely in the window for his next open heart surgery. Nick was essentially born without a left heart ventricle which can’t be fixed. The Fontan circulation is a series of 3 surgeries with the goal to redirect the way blood flows. The last Fontan procedure addresses the blood flow specifically from the lower body to the lungs.
The heart catheterization isn’t a guarantee that Nick is headed straight into the Fontan but we have to be prepared for that very realistic possibility. Although we knew that day would eventually come, the gravity of it is hard to choke down and process.
So the rest of today, we will be business as usual not to alarm the kids unnecessarily. Tomorrow we will go out and get a few things for Nick to keep him busy while he is admitted in the hospital. On Thursday we will be moving to another RV location because our current place is all booked up for the upcoming weekend. Thursday night, I will take Nick to the hospital and stay overnight with him until he is finished the next day. On Friday after the procedure, we will hopefully have a plan going forward.
“Strength grows in the moments when you think you can’t go on but you keep going anyway”
June 7, 2020 posted 8:08pm:
Taking a peaceful break from the regularly scheduled programming of coronavirus and rioting.
“The quieter you become, the more you can hear”
“The quieter you become, the more you can hear”
June 6, 2020 posted 8:05am:
We’ve hit the road again! On our way to Michigan for Nick’s cardiology appointment which is on Tuesday. Hopefully we will get a better idea of what the timeline for his next surgery looks like.
Like most of you, we have a touch of the quarantine blues so having an adventure and change of scenery is much needed. We will only be gone for about a week and look forward to seeing our old neighborhood while we are there.
The benefit of us being able to travel in an RV is that we are self contained. We don’t have to risk exposure to germs from a plane or staying in hotels. We don’t have to worry about refrigeration for Nick’s food and the kids are comfortable and know it to be their home away from home. And seriously the bathroom situation is amazing. I can help them go when they need to without having to stop our trip a zillion times. Think of when you have to use the bathroom on a plane, but with a touch more turbulence.
After our doctor appointments and visit to Michigan, we have a planned stop in Iowa on our way back home. More to come on that next week...
“We travel not to escape life, but for life not to escape us”
Like most of you, we have a touch of the quarantine blues so having an adventure and change of scenery is much needed. We will only be gone for about a week and look forward to seeing our old neighborhood while we are there.
The benefit of us being able to travel in an RV is that we are self contained. We don’t have to risk exposure to germs from a plane or staying in hotels. We don’t have to worry about refrigeration for Nick’s food and the kids are comfortable and know it to be their home away from home. And seriously the bathroom situation is amazing. I can help them go when they need to without having to stop our trip a zillion times. Think of when you have to use the bathroom on a plane, but with a touch more turbulence.
After our doctor appointments and visit to Michigan, we have a planned stop in Iowa on our way back home. More to come on that next week...
“We travel not to escape life, but for life not to escape us”
May 18, 2020 posted 8:43pm:
“To find peace, sometimes you have to be willing to lose your connection with the people, places, and things that create all of the noise in your life.”
Have a great week, wishing you all peace
Have a great week, wishing you all peace
May 12, 2020 posted 10:28pm:
Nick says “Dilly Dilly!”
May 7, 2020 posted 5:48pm:
Throwback of Nick sums up our covid mood.
April 12, 2020 posted 8:08pm:
Everyone had a great time finding their small gifts and hidden eggs despite mom and dad being the ones who hid them this year.
Social distancing prevented the Easter Bunny from stopping at our house. Even he didn’t get a pass.
Hoping you had a great Easter
Social distancing prevented the Easter Bunny from stopping at our house. Even he didn’t get a pass.
Hoping you had a great Easter
March 27, 2020 posted 2:45pm
We’ve become so occupied by “filling”. Fill time with being busy. Fill house with things. Fill loneliness with artificial media. Fill emotions with food or alcohol. Sometimes we need to take a step back. This time of sheltering at home has given many the opportunity to do just that.
It might be annoying or distressing, but it is okay to be “bored”. It’s an important lesson for our kids to not always be fulfilled with being entertained every minute of their lives. We do plenty of fun things together as a family but we also have times when the kids say they are bored. What they don’t realize is that we are teaching them a skill set in that too. Being bored can teach you patience, it can teach you to adapt, it can teach you to be still and expand your mind, it can teach you to be creative, it can teach you to sense clarity, and it can teach you to appreciate and enjoy peace.
Thank you for being uncomfortably bored. When you are bored and staying home, you are helping to protect the vulnerable portions of the population like Nick. Also a giant Thank You to all those that are still working!
Be bored. Be well. Be grateful.
It might be annoying or distressing, but it is okay to be “bored”. It’s an important lesson for our kids to not always be fulfilled with being entertained every minute of their lives. We do plenty of fun things together as a family but we also have times when the kids say they are bored. What they don’t realize is that we are teaching them a skill set in that too. Being bored can teach you patience, it can teach you to adapt, it can teach you to be still and expand your mind, it can teach you to be creative, it can teach you to sense clarity, and it can teach you to appreciate and enjoy peace.
Thank you for being uncomfortably bored. When you are bored and staying home, you are helping to protect the vulnerable portions of the population like Nick. Also a giant Thank You to all those that are still working!
Be bored. Be well. Be grateful.
March 10, 2020 posted 3:01pm:
We used to be looked at as the weirdo germaphobes who always had antibacterial wipes and hand sanitizers everywhere we went. Now with the COVID-19 fears, I just say welcome to our world. Not to revel in the miserable anxiety of it all, but to have some insight and understanding of the lines that heterotaxy and heart families have to constantly walk. Weighing and measuring every risk; which risks are worth the panic and which ones are still existent but manageable. At some moments we want to subscribe to the mass hysteria. We feel and do crazy things to hedge against our fears and find ourselves wanting to irrationally buy all the toilet paper. Other moments, we know we have to calm our fears and deploy a more rational and realistic approach. Then when everything seems manageable, right back to the panic creating this horrible cycle.
So as an example, something as simple as going out to the grocery store with the whole family is complicated. We have to worry about sick people who are there. We have to worry about what things the kids will touch that will get past our ritualistic sanitizing checkpoints. We weigh factors like: Is it cold and flu season? How long are we planning on being in the store (longer than an hour and we have to bring Nick’s tube feedings)? Do we use a cart and our own strollers? How busy is the store going to be? How do we best avoid coming into contact with people? How should we discourage our kids from trying to help us by touching everything and putting items on the dirty conveyer belt? How do we prep and deal with the normal pre schooler aged behavioral drama if it comes up? If after those considerations we do in fact let everyone go, we still question our decision at every turn. Did they touch something that will result in someone getting sick? Was the risk of someone getting sick worth it when we weigh it against allowing the kids to experience normal outings?
Honestly, most trips to the store are done by Jimmy. He braves the elements for us because it’s so much easier to manage one vigilant germ avoiding adult versus dealing with all the added variables associated with bringing everyone. Sometimes we all go for a car ride to the store and just wait for him so as to feel like a proper outing. It may not be the best alternative to balance normalcy and be like all the other kids and families, but we do the best we can and make decisions that we think are best for our family. As a byproduct, that also means we miss a lot of people’s life events like birthdays, weddings, showers, family gatherings, holidays, and graduations.
There is a constant need to plan and think ahead while also being able to be purely reactive and flexible. The decision making process for a parent to a special medical needs child is exhausting. This type of tired is from the constant stress of not ever allowing ourselves to make mistakes and if we do, being able to somehow live with them. We can’t rely on anyone to care for Nick with confidence so we really can’t take a day off. We know that if we are “off” or make a wrong judgement call, that it can come with dire consequences which flirts with death. Literal Death.
We have to feed Nick the correct calories and correct volumes, administer the correct doses of medicines, advocate correctly for the best care, make critical medical choices, eliminate exposure to the many daily dangers, and navigate the sea of choices to find a balance that somehow reassembles healthy and normal.
Trying to put all of these feelings of isolation, exhaustion, anxiety, and stress into tangible concepts to process can be quite heavy. But all of that is undeniably our reality as much as the smiling faces during beach days, Disney days, movie nights, and family time. It’s imperative to acknowledge all aspects of this life and not just the highlight reel of snap shots of half truths and masked grief.
We get so good at this self preservation mode of keeping it all together that it denies us the ability to admit that we aren’t superhuman, not all the time anyway. You have to give yourself permission to feel a certain way, and to also know that it is okay to feel that way. It’s okay to confront the uncomfortable feelings of being a failure, anger, depression, stress, and anxiety. It’s okay to feel those things sometimes. And if you feel those things more than sometimes, it’s okay and important to ask for help. But those conversations won’t happen if we don’t bring to light the places that continually get brushed aside as too difficultly dark to navigate.
This journey has been fraught with darkness and uncertainly but it has revealed to us a beautifully less traveled path to which we can be our most authentic and best versions of ourselves.
Take time to appreciate the rain and you will better appreciate the rainbow. “Everyone wants to be happy, nobody wants to be in pain. But you can’t have a rainbow without the rain”
February 12, 2020 posted 7:21pm:
Feeding therapy day. Nick took 19 bites of food during our session. It probably equates to only 4 tablespoons of food but to us it was closer to a truckload!
Sometimes when we try to look ahead, the distance becomes too overwhelming. In those times, all we can muster is the tiniest tip toe in the direction we are headed. But that is progress too. We have learned to find and celebrate all of life’s smallest victories.
“Sometimes you face difficulties not because you’re doing something wrong but because you’re doing something right”
Sometimes when we try to look ahead, the distance becomes too overwhelming. In those times, all we can muster is the tiniest tip toe in the direction we are headed. But that is progress too. We have learned to find and celebrate all of life’s smallest victories.
“Sometimes you face difficulties not because you’re doing something wrong but because you’re doing something right”
February 8, 2020 posted 10:57am:
The page has been MIA lately. Christmas came and went. New Year’s Day came and went. Things have been blissfully uneventful. Or so I thought, until I had one of those “aha” moments and faced some hard truths. My realization was that I’ve also been MIA from life.
We started our epic journey in October of 2018. The plan was to enjoy every moment of our lives by exploring new places and experiencing new adventures. Our goal was to spend as much quality time together as a family as we could. We knew Nick had an impending heart surgery ahead and it was exceedingly important for us to make lasting memories. We wanted to live purposefully so we didn’t have to look back with any regrets. Knowing that if the unimaginable happened with Nick’s surgery, we wouldn’t be left with the wish for time back to do it differently.
We did that, we were living our best lives. We started in Minnesota and trekked across country to California. After spending over a month away from home, we then set off to the opposite coast and made our way to Florida. It was such an amazing trip with many cherished stops along the way with visits with friends and family.
Arriving in Florida felt like a major accomplishment. We had traveled from coast to coast. We had already planned on hunkering down in Florida for the winter and made our first attempt at being snow birds. It didn’t take long to realize that the sunshine and 80 degree weather in Florida was preferable to the Arctic freezer which was Minnesota. It also didn’t take long to realize that traveling cross country for a family of 6 who liked to make frequent visits to Mickey Mouse’s house was becoming very costly.
So I had taken on a part time bartending job. It was something that I could easily just jump into and it wasn’t serious or permanent. It was the means to our continued fun. But as time went on, my job not only allowed us more financial freedom, it also was feeding a part of my ego. My attentions were slowly turning more to work and I had even changed my status to full time. I got to a point where when I wasn’t working, I was exhausted tired and my family only got what I would equate to as leftovers of myself.
I was lost. For many of us, we work hard so we can get to a place of security and a level of comfort, the retirement endgame. The place where we don’t have to work and we can just enjoy our time with family and friends. So we focus on working to achieve those goals by putting ourselves through school and accumulating student debts. We work ridiculous jobs with long hours. We excuse missing family functions because our goal is somehow a noble mission and the end always justifies the means. Except, what if we got it wrong? What if we didn’t have to work so damn hard to get to the “some day” and we focused more on the “today”?
On Thursday, we had a feeding therapy appointment at the children’s hospital for Nick along with some routine labs. Just the thought of stepping foot in the hospital gives me anxiety. The rogue germs wandering about and praying to God that as we navigate through the sea of sick people, we can avoid picking up anything that will compromise Nick’s health. Added to that worry, is the panic of trying to keep an inquisitive four year old distracted for hours on end to keep him from touching anything that might be infected.
Being in the hospital brought it all back. It brought back all the memories of past hospital stays. All the struggles and long days and nights of just watching Nick’s little body fight to live. It brought back all the anxieties and fears. It also brought back all the triumphs, the appreciation, the gratitude, and the love. It brought me back to the place where I could remind myself why we were here to begin with.
Nick’s appointment at the hospital grounded me and my focus came back. So as I was forced to hold Nick down to fill 5 tubes worth of blood, I instantly felt guilty for how selfish I’ve been. Months of my incessant bitching about work things became so stupid as my brave little boy is screaming at the top of his lungs for the poking and pain to stop. What in the world do I have to complain about. This sweet child of ours has endured more in his short four years than most do their entire life. We have real stress to deal with. We shouldn’t be consumed with the superficially created, self imposed stresses from work. So, I quit my job.
Needless to say, Friday was an all around great day. We spent time together which wasn’t rushed or met with half energies. We are planning to spend the rest of the winter months in Florida before heading back up north. From here, we will stop home in Minnesota then go to Michigan for Nick’s doctor appointments or we may decide to do the reverse.
We also have some big family news, James has enlisted in the military. We will have to say our goodbyes to him soon because he will be shipping off to basic training at the end of March. We are so incredibly proud of James for making this huge decision for himself and because he also got the highest possible score on the ASVAB test. That allowed him to choose any branch of service and any job. He chose Army and 17C (Cyber Operations Specialist).
It will be interesting to see where life takes us to a year from now and what that will look like. Until then, some food for thought: If tomorrow was the end, was today the way you would have wanted to spend it?
We started our epic journey in October of 2018. The plan was to enjoy every moment of our lives by exploring new places and experiencing new adventures. Our goal was to spend as much quality time together as a family as we could. We knew Nick had an impending heart surgery ahead and it was exceedingly important for us to make lasting memories. We wanted to live purposefully so we didn’t have to look back with any regrets. Knowing that if the unimaginable happened with Nick’s surgery, we wouldn’t be left with the wish for time back to do it differently.
We did that, we were living our best lives. We started in Minnesota and trekked across country to California. After spending over a month away from home, we then set off to the opposite coast and made our way to Florida. It was such an amazing trip with many cherished stops along the way with visits with friends and family.
Arriving in Florida felt like a major accomplishment. We had traveled from coast to coast. We had already planned on hunkering down in Florida for the winter and made our first attempt at being snow birds. It didn’t take long to realize that the sunshine and 80 degree weather in Florida was preferable to the Arctic freezer which was Minnesota. It also didn’t take long to realize that traveling cross country for a family of 6 who liked to make frequent visits to Mickey Mouse’s house was becoming very costly.
So I had taken on a part time bartending job. It was something that I could easily just jump into and it wasn’t serious or permanent. It was the means to our continued fun. But as time went on, my job not only allowed us more financial freedom, it also was feeding a part of my ego. My attentions were slowly turning more to work and I had even changed my status to full time. I got to a point where when I wasn’t working, I was exhausted tired and my family only got what I would equate to as leftovers of myself.
I was lost. For many of us, we work hard so we can get to a place of security and a level of comfort, the retirement endgame. The place where we don’t have to work and we can just enjoy our time with family and friends. So we focus on working to achieve those goals by putting ourselves through school and accumulating student debts. We work ridiculous jobs with long hours. We excuse missing family functions because our goal is somehow a noble mission and the end always justifies the means. Except, what if we got it wrong? What if we didn’t have to work so damn hard to get to the “some day” and we focused more on the “today”?
On Thursday, we had a feeding therapy appointment at the children’s hospital for Nick along with some routine labs. Just the thought of stepping foot in the hospital gives me anxiety. The rogue germs wandering about and praying to God that as we navigate through the sea of sick people, we can avoid picking up anything that will compromise Nick’s health. Added to that worry, is the panic of trying to keep an inquisitive four year old distracted for hours on end to keep him from touching anything that might be infected.
Being in the hospital brought it all back. It brought back all the memories of past hospital stays. All the struggles and long days and nights of just watching Nick’s little body fight to live. It brought back all the anxieties and fears. It also brought back all the triumphs, the appreciation, the gratitude, and the love. It brought me back to the place where I could remind myself why we were here to begin with.
Nick’s appointment at the hospital grounded me and my focus came back. So as I was forced to hold Nick down to fill 5 tubes worth of blood, I instantly felt guilty for how selfish I’ve been. Months of my incessant bitching about work things became so stupid as my brave little boy is screaming at the top of his lungs for the poking and pain to stop. What in the world do I have to complain about. This sweet child of ours has endured more in his short four years than most do their entire life. We have real stress to deal with. We shouldn’t be consumed with the superficially created, self imposed stresses from work. So, I quit my job.
Needless to say, Friday was an all around great day. We spent time together which wasn’t rushed or met with half energies. We are planning to spend the rest of the winter months in Florida before heading back up north. From here, we will stop home in Minnesota then go to Michigan for Nick’s doctor appointments or we may decide to do the reverse.
We also have some big family news, James has enlisted in the military. We will have to say our goodbyes to him soon because he will be shipping off to basic training at the end of March. We are so incredibly proud of James for making this huge decision for himself and because he also got the highest possible score on the ASVAB test. That allowed him to choose any branch of service and any job. He chose Army and 17C (Cyber Operations Specialist).
It will be interesting to see where life takes us to a year from now and what that will look like. Until then, some food for thought: If tomorrow was the end, was today the way you would have wanted to spend it?