Nicholas Updates - 2017
December 24, 2017 posted 2:02pm:
Wishing everyone a very blessed holiday season. May the Christmas message of hope, peace, and joy be yours today and throughout the new year.
Merry Christmas!
December 21, 2017 2:21pm:
Another first was checked off the list, sledding! ✅ The boys went outside and went sledding down the side of the house a couple of days ago. We've been waiting for enough snow but warmer temperatures to take them out.
Trying to make fun memories with the kids at home since we're officially in "lock down" mode for cold and flu season. We've even had to make the difficult decision to skip our family parties. The decision does make me feel bad because we're isolating ourselves and kids from family. But on the other hand, we know that Nicholas is only one cold germ away from a serious life threatening hospital trip.
Honestly, there are times when I feel that people think we are overreacting. They don't live our truth though. They probably don't have news feeds filled with kiddos like Nicholas that serve as a constant reminder. A reminder that although he is doing very well, we are always walking on what feels like a margin of error only as wide as a tightrope.
There is so much joy and gratitude for Nicholas, more than any words or sentiment could ever be able to convey. There is also a dark side of having a child with any sort of illness though. Take all of the usual concerns of a parent and multiply it with the additional sadness, anger, fear, burdens, guilt, panic, hospital PTSD, and isolation.
If there is anything we've learned, it's that we have to navigate through it all to find a balance. It's all too easy to get sucked into and wallow in the darkness. It's also not advisable to live in a unrealistic happy denial bubble either. We have to constantly weigh the risks against our attempts at giving Nicholas, and all the kids, a "normal" childhood.
Will we make mistakes along the way? Of course, we all do. The challenge for us is to minimize ours because we don't have the same forgiveness as others. One wrong decision or error in judgement, something as simple as to whether or not we suspect someone of being sick, could cost us Nicholas' life. His LIFE. Not just the inconvenience of a illness, his entire existence.
As many of us are busy running around this holiday season, please try to keep understanding and compassion in your hearts because you never know the battles a person next to you is fighting. Another reminder also to be considerate of others if you are sick and minimize the spread of illness by avoiding public places if possible, coughing into your arm, and washing your hands often.
"I carry your heart with me (I carry it in
my heart) I am never without it..." -Cummings
December 18, 2017 posted 12:28 pm:
No phone calls from the hospital, which means the cultures were negative! We managed to keep Nicholas' fever down with just a few rounds of medicine. He was feeling well after a couple of days. To celebrate, we decided to do some cookie decorating.
Happy Monday, hoping you find your miracles today! "Life is a series of thousands of tiny miracles. Notice them"
December 16, 2017 posted 12:20pm:
'Tis the season for illness. Nicholas spiked a high fever of an unknown origin and Jimmy took him to our local Children's hospital ER. Normally we can manage his low grade fevers at home but as a part of our current fever protocol, we went in to get things checked out at the hospital.
White blood cell count and oxygen saturations looked good. Tested negative for enfluenza and RSV. Blood and urine samples were taken to run cultures which take 24 hours. We were told that "no news is good news" so hopefully we don't get a phone call today about a positive culture. Fingers crossed that nothing results from them.
Can't wait for Spring when we are at lower risk for flu and colds. When life gives you lemons, cut them in half and squirt life in the eye! Have a great weekend!
December 6, 2017 posted 1:05pm:
Happy St. Nicholas Day! Orphaned at a young age to wealthy parents, Saint Nicholas was a devout Christian and reportedly spent his inheritance in the service of helping the poor and sick. St. Nick is known as the protector of children and sailors and is associated with gift giving.
In the 1700s, Sint Nikolaas or Sinterklaas made his way to America where he would eventually be transformed into the present day red suit wearing Santa Claus. For many, gift giving on December 6th also changed and those traditions are now included in the Christmas holiday celebrated on December 25th.
Feeling particularly blessed to be spending today with our very own special Nicholas. Hoping that the kind and giving spirit of St. Nick stays with us today and always. "The Giver of every good and perfect gift has called upon us to mimic His giving, by grace, through faith, and this is not of ourselves" -St. Nicholas
November 30, 2017 posted 1:19pm:
And here it is, the pièce de résistance!
First ever gingerbread house decorated ✅
Have a great Thursday! "How SWEET it is to be loved by you"
November 29, 2017 posted 6:38pm:
'Tis the season for listening to Christmas music while gingerbread house decorating! We actually did a graham cracker one while our big gingerbread house hardens overnight.
Life is so sweet 🍭🍬 Hope you had a great Wednesday.
November 24, 2017 posted 8:18pm:
"It's beginning to look a lot like Christmas" in the Viner house! The kid's tree & mommy's tree are up!
Hopefully you successfully survived Black Friday. That leaves Small Business Saturday, Cyber Monday, and Giving Tuesday.
Small Business Saturday: I love the idea of supporting our neighbors and strengthening our villages. Please consider supporting our biggest supporters & partners at Aimee Anne Photography(www.aimeeannephotography.com) and Sierra Cycles(www.sierracycles.com).
Cyber Monday (every other day too!): Don't forget that you can also directly support us by shopping as you normally would on Amazon through www.smile.amazon.com and selecting the Nicholas Viner Heart Foundation as the benefactor of your purchases. A percentage of the sales will be made available to us as a donation from Amazon.
Giving Tuesday: Again this year, Facebook and the Bill and Melinda Gates Foundation will be matching donations on #GivingTuesday November 28th starting at 8am ET. They will match funds up to $2M so please mark your calendars and consider making a donation early on Tuesday November 28th. Your contribution will make an impact, whether you donate $5 or $500. Every little bit helps. We had great success last year and with your help, hope to make this Giving Tuesday the best yet! Thank you so much for your support in advance! You can donate by clicking the "Donate" button on our FB page Facebook.com/vinerfamily.
November 23, 2017 posted 12:50pm:
What we wouldn't do to get him to actually eat the turkey, maybe next year!
Happy Turkey Day!
November 22, 2017 posted 10:34pm:
We spent the evening with family and the kids got to play with their cousins. We are just so blessed and thankful for every moment...So much so, that words can't adequately express how much.
With grateful hearts, we all wish you and yours a very Blessed and Happy Thanksgiving filled with peace, love, and happiness.
November 16, 2017 posted 4:21pm:
Thank you for your thoughts and prayers, Nick sends you a kiss too! 😘
Came out of anesthesia great this time. Nicholas' throat is a bit horse from the breathing tube but we were discharged without any issues. Just saw the doctor and the images didn't show anything new from his previous ones, which is good news because in this cases we didn't want any surprises. The Mayo team now has more details that they needed. We don't have to come back to the hospital for a follow up again for 6-7 months which is great since that brings us out of cold and flu season.
We made a decision to cancel the X-ray for tomorrow morning and reschedule it for when we come back for his cardiology follow up. It was going to be a 3 hour event and I just don't think Nick, or anyone else for that matter, would be able to tolerate another day of tests or doctors. There are no current issues and nothing emergent in nature, we just wanted to do another study for motility because his last one was from birth.
We were prescribed a new medication from GI that will hopefully help with easing our ongoing feeding/stomach issues. Weight gain and growth are concerns that are back on the table in preparation of his next surgery. The goal is to get him around 30 pounds before his Fontan circulation completion, provided his heart doesn't show signs of needing it sooner. He is currently only 22 1/2 lbs which puts him on the growth chart, but barely. Seems like a long road towards 30 lbs but I'm also not complaining because I'm not at all prepared for his surgery to take place either.
I think everyone could deal with a dose of sleep in the comfort only home can bring.
"There's no place like home"
November 16, 2017 posted 9:41am:
Getting checked in this morning before anesthesia. A little shot of versed was given to keep Nicholas nice and relaxed. If only they could give a shot to daddy too, he's a little nervous today.
Jimmy and I are off to give a skin sample for the study while keeping AJ and Josephine occupied before we get to meet up with Nick in the recovery area.
Fingers crossed he tolerates anesthesia during his tests. Waiting is always the hardest part...
November 15, 2017 posted 4:43pm:
Nothing like starting out an early morning with a failed blood draw attempt. I hate to say it but not all pediatric lab technicians are created equal. We've had some really excellent ones in the past as well as some not so stellar. Nicholas is pretty good with shots and blood draws and really only cries for a split second. The exception is when they don't hit his vein on the first or second attempt and they then go on a "fishing" expedition. Who can blame him though, I've had that happen to me before and didn't particularly like it either.
We will just plan on getting some blood during Nicholas' sedated MRI and echo tomorrow. We finished the morning with blood draws for Jimmy and I, mouth swabs for the little kids, X-rays and electrocardiogram for Nick, echocardiograms for 3 of us, and a consult with GI. We ended up having to add an appointment for Friday morning after our GI consult so that we could get updated imaging and baselines for his gut and intestines.
We finished the afternoon with a consultation with our new dietician and an appointment with our cardiologist. Nicholas needed to get final clearance for sedation tomorrow. Anxious to find out how his heart is and what indications, if any are given, for when his next surgery is going to be. We are nervous about Nicholas having to be under due to his track record with coming out of anesthesia but it's important that we get accurate images and data for the study.
Now to kick our feet up for a much needed break in the action, we will finally get to relax in our room. Jimmy will probably just run out and grab something to bring back to our room for dinner. Hopefully the kids will fall asleep early tonight since we started so early today because it's going to be an early start again tomorrow.
November 14, 2017 posted 6:08pm:
Boys are checking out the hotel room that will be home for the next couple of days. We are in Rochester for our hospital study and Nicholas' MRI and tests.
Our new normal when it comes to hotel rooms consists of me going in first and lysoling and cloroxing the entire room. I can get a little crazy with it so the window needs to be cracked open and Jimmy has to take the kids out for a little walk so that they don't inhale all of the fumes. Do I even Lysol the carpet you ask, of course!
We are trying to make this into a mini staycation for the kids but any trip to the hospital brings on hospital PTSD and my anxiety skyrockets. Not only do we worry about how Nicholas will tolerate the tests and anesthesia and how we will manage the kids when they have a tantrum, we have to also worry about the super germs because we're in a hospital. Lots of spray sanitizer and prayers are in order!
Pizza and movie in our room tonight and trying to relax before our first appointment packed day.
Wish us luck and fingers crossed for an uneventful rest of the week.
November 11, 2017 posted 11:25pm:
Look who found a little snow this morning!
Camo Santa also made his appearance today for Veterans Day.
November 8, 2017 posted 6:14pm:
We are still slowly putting things away from our long vacation. We are slowly getting back into our home routine as well.
Nicholas is doing very well and his hand, foot, and mouth spots are all but a distant memory. AJ has only a couple of spots on his arm and face and Josephine appears to have escaped and has been spared. Although, we also have an alternative theory that she may have been the actual outbreak monkey. Josephine had a really bad diaper rash that I attributed to her teething but maybe that was in fact the origin?
On another topic, seriously thinking about getting a non stressful part time job to get out of the house for a few hours and make some extra money for our family vacations. It might be nice to have actual adult conversations since being a parent to a special needs child can be lonely because it is so isolating. There is a big part of me that is super nervous about going out and bringing germs back but there is another part that also misses having an identity apart from being just a mom. It's so easy to let yourself go and lose yourself when you put everyone else first.
We'll see what the future brings but I haven't been away a day from the kids since having Alexander and I'm missing them already at the thought of an outside job. Going to just try and enjoy the rest of the week and this weekend before making any decisions. We also have to leave again next Tuesday for our mini trip to the Mayo Clinic for appointments.
"When you're finished changing, you're finished." -Benjamin Franklin
November 3, 2017 posted 7:04pm:
We are cutting the remainder of our trip a week short and heading home already. We made a dental appointment for AJ to get the caps he broke while at Disney replaced. We need to get back to Minnesota and download the RV so that Jimmy, James, and AJ can drive to Michigan for the repairs next week.
As we departed yesterday from the RV park in Florida, we were cautiously monitoring Nick. The day before I started noticing a little rash on his legs. He has always had keratosis pilaris, which are tiny little bumps and rough patches on his arms and legs, and it looked like a more inflamed version of that. Then we started noticing his arms were looking inflamed too. No fever, no behavior change, was not laboring to breathe, he was not itching the rash any more than normal, and Nick did not seem irritated by it. Because of those things, we started thinking maybe it was a heat rash and were not too terribly alarmed.
Next morning we woke up and his rash was spreading. It was now all the way up his arms and all the way up his legs. Still no fever, nothing changed in his behavior, and everything was the same as the night before except the rash was spreading. 20 hours or so drive away from home, with a potential mini crisis on our hands.
We had planned on driving the first day all the way to Paducah, KY to spend the night at a hotel we booked a few days back. We had to make arrangements to stay overnight instead of staying in the RV because we had to winterize it. Once we get to Minnesota, the RV will be sitting in storage over the winter and if we didn't put the RV antifreeze in the water lines they would freeze and could get damaged.
This meant that we no longer had access to running water or use of the toilet. This may not seem like a big part of the logistics of driving but it actually makes it a bit more challenging because we had to build in more restroom stops. We have a potty trained toddler with us who likes to tell us he has to go to the bathroom at the very last minute!
So here we are now, rashy heart kiddo, frequently potty going toddler, teething infant (she got all four top teeth in the last couple of weeks), overly tired because he stays up all night teenager, one anxious mom, and one dad who doubles as our RV chauffeur on the road from Florida on our way to Kentucky.
One additional detail I neglected to add about our current set up of our rig (that's what true RVers call them I'm learning), we can't back up because of the tow dolly's braking system. This means we have to be super careful where we pull in for stops and gas. We have to look ahead and spot areas where we have enough clearance to exit or turn. If we get stuck somewhere, that would result in us having to unloaded and backing up the car, taking the tow dolly off the RV and moving it out of the way, backing up the RV, and then straightening the RV so that we can put back on the dolly and drive the car back onto it. All of that is why we don't want to take a wrong turn somewhere. Eventually, we will go to a four wheels down method but since we already bought the dolly, we're trying to get some use from it.
Our plan was to keep an eye on Nick and try to make it to our intended stop and find an area urgent care to get him looked at. We finally get closer to Paducah, the route on the map said 9 hours which meant the trip was closer to 12 hours for us, we find an urgent care facility which is open until 7pm. It's already nearing 6pm and we're in an unfamiliar city. We were also trying to fight the clock on getting to the hotel for free dinner and drinks which also ended at 7pm. It was a huge perk and reason we paid and booked that particular hotel suite. This is of course secondary compared to Nick but keep in mind, we weren't fearing anything life threatening and just wanted to get him checked out for our peace of mind.
Luckily, there wasn't a wait at urgent care and he was seen immediately. Stats looked good and in "normal" range for Nick. We only had to wait 5 minutes to rule out strep throat since there were now bumps in his mouth. Test came back negative on strep which then led the doctor to conclude that it was hand foot and mouth which is viral. This also meant there was no medication course of action to be taken and would have to run its course. We were told it's super contagious and to expect the other 2 to also get it. Thankful that it wasn't too serious but the diagnosis still left me feeling defeated and frustrated. We try to be so diligent on sanitizing and washing hands..
It's was 6:30 and we are headed to the hotel. Checked in, kids and bags in the room, and with 20 minutes of dinner left. Once again we came trough in Viner fashion, the expression we use to describe our life moments that feels like the stuff of sitcoms. Couldn't make this stuff up even if we tried, ha!
Tired but relishing in our small moment of victory, sitting in our room with our plates of free food, the kids decide that they don't want to eat because they are too interested in exploring the room. Gotta love the joys of parenting! End of the day, we are all safe and we are together.
This morning we woke up a little later since we got into the hotel late yesterday. Nick's rash looks so much better already and neither of the other two show signs yet. We ate breakfast, filled up our coffee mugs, and we were on the road again.
If we drove straight through, we're looking at a 14 hour day on the road. We'd be smart to stop but the thought of packing everything for one hotel night almost doesn't seem worth it. Especially because once in our hotel room, I know we'll be wishing we were home and we'll spend the evening idly kicking ourselves for not pushing through the last couple of hours.
Crossed into Wisconsin a little while back and steadily making our way home. We leave the pool, beach, and sun behind. But, we put on our warm hoodies and head back to our "village" of friends and family because "there's no place like home".
October 31, 2017 posted 4:50pm:
Trick or treating went great! A bit hot out for costumes but they made it back to the RV with buckets full of candy. Note to self, chocolate candy and sun don't mix. We never had to worry about this in MN, ha!
Happy Halloween, stay safe!
October 31, 2017 posted 9:34am:
Can't believe a whole year has gone by and that Nicholas will be able to actually trick or treat for the first time later this afternoon. So excited and blessed we get to experience another first with him! Pictures of his big debut will be posted later tonight.
Hope you have a faBOOlous Halloween!
October 29, 2017 posted 3:48pm:
AJ has developed a bit of a cold sounding cough so we spent the morning doing baths and stripping all the bedding to be washed. Being in the RV where it's smaller quarters make things a bit more challenging but we will manage.
It is a little chilly outside. Thanks to big brother James for watching AJ, we decided to take Nick and Joie out and do a little shopping. We made a stop at the area flea market, browsed beach gift shops, and picked up a few new pirate gear items from the dollar store for our little mateys.
Hoping to get past whatever cold/cough thing we have going on quickly and uneventfully. To quarantine or not to quarantine from the rest of the family. Just curious, what do you do with multiple kids and one gets sick?
October 28, 2017 posted 4:54pm:
Happy Friday, have a great weekend!!
"Life is like the ocean. It can be calm or still, and rough or rigid, but in the end, it is always beautiful"
October 27, 2017 posted 6:57pm:
"Yo ho, yo ho, a pirate's life for me"
Happy Thursday me 'earties, yo ho!
October 25, 2017 posted 8:01pm:
Every sunset brings the promise of a new day, Goodnight.
October 24, 2017 posted 12:37pm:
It is another gorgeous day! Nicholas absolutely loves the water and the beach life seems to suit his laid back personality. Who are we kidding, it seems to suit all of us. Even AJ with his wild personality loves to run around in the sand and go shelling.
"The sand may brush off. The salt may wash clean. The tan may fade. But the memories will last forever."
October 23, 2017 posted 6:56pm:
We are back at the RV park in the panhandle and settling back into our home away from home. The temperatures are very nice, not too hot during the day and cool at night. It might almost be on the slightly chilly side to go swimming this week but we'll improvise like we always do.
Ran out to restock the RV with food for the week. We are otherwise having a relaxing day staying in as we wind down from Disney and talk of going back already. Maybe we'll go again in the spring! 😉
Halloween crafts were made today and we will be carving pumpkins soon. Looking forward to the kids dressing up in costumes. The RV park we are staying at is having a trick or treating event.
Happy Monday, have a great week!
October 22, 2017 posted 9:26am:
And so ends our tale of Disney Adventures, until next time...
"See ya real soon"
October 21, 2017 posted 10:47pm:
Our last day at Disney World was spent at Magic Kingdom. We did another morning and afternoon session. The first included rides and the second was more for the fireworks and taking in the last moments of Disney Magic.
The fireworks display is awesome and although we loved watching from the convenience of our hotel room most nights, being there in person is a must! So glad the kids got to see it in person on our last night.
We ended our incredible trip to Disney by riding on one last family ride. The whimsy of It's a Small World was a perfect ending.
"Wishes can come true, if you believe in them with all your heart. And the best part is, you’ll never run out of wishes." - Jiminy Cricket
October 20, 2017 posted 9:21pm:
Today, Peter Pan and Tinker Bell brought the kids white clothes, Beauty and the Beast stuffed animals, and glow in the dark sticks for the fireworks tonight.
We started the day early today. We got to Magic Kingdom before 8am and the first thing James and I did was ride 2 times in a row on Space Mountain since there was no wait. We had fast passes booked for the rest of the morning and planned on heading back to the room around 12-1pm.
Nick got to ride on flying Dumbo, Teacups, Toy Story, Peter Pan, and Under the Sea before we took a break. It was a packed morning for us. We headed back at the perfect time since the height of the afternoon heat was setting in.
So after taking about 3 hours to rest, we were on our way back out. We decided to go back to Epcot to do dinner which was compiled of more country samplings. The little kids were throughly entertained by some bubblers we got them. They kept them busy for the bulk of the evening.
James and Jimmy were on a scouting mission for pins. They have been actively participating in the pin exchange with Disney cast members throughout all of the parks. Kind of a nice thing for the big boys to do together.
Been a super long day and our legs and feet are feeling it! Only one park day left of our Disney adventure. It's hard to believe it's almost over already.
"Some people are worth melting for" -Olaf, Frozen
October 20, 2017 posted 12:06pm:
"Wait for me somewhere between reality and all we've ever dreamed" -Peter Pan
October 19, 2017 posted 8:39pm:
Today, Peter Pan and Tinker Bell brought the kids blue clothes, pajamas, and slippers.
We started the day with a different approach. Instead of going to the park early, we decided to let the kids sleep in and wonder onto the parks a bit later. Though the morning felt much more relaxed and peaceful, the afternoon at Hollywood Studios today was very hot.
We stayed for a few hours and managed to beat the heat by finding shaded areas for breaks. The boys went on a couple of rides. We walked around for a while until James and I were going to get on an adult roller coaster but the little kids were super fussy so we decided to just head back tot he hotel room.
Truth be told, I think I was getting just as cranky as the kids from being in the heat. Fortunately we got a second wind after a short rest and headed back to Magic Kingdom. We even met up with Jimmy's sister's family who are also in Disney.
Nick went on some of the same rides as before but he also went on the iconic Flying Dumbo ride. He was so excited to get on it and of course the boys were fighting over who got to control the joystick.
2 more park days left until our Disney trip is concluded and we are deciding which parks to finish with. Although I love Animal Kingdom, it is the hottest park and we don't want to risk Nick overheating so we will most likely be skipping that one.
"Today's special moments are tomorrow's memories." - Genie, Return of Jafar
October 18, 2017 posted 7:42pm:
Tinker Bell & Peter Pan brought the kids all gray clothing items this morning along with plush stuffed animals.
We ventured to Epcot today and it was another beautiful weather day. We all went on the Nemo and Crush rides but mostly just walked around the world pavilions. AJ & Nick did the passport stamps while we were traveling country to country.
We sampled food from several countries but to name a few we tried the crepes from France, brats from Germany, curry from India, and paella from Spain. We also felt that it was our responsibility to try the country's accompanying beer as well. So many good things that it's hard to pick out our favorites.
It's been an exhausting day. We took a small break at the hotel before going back to Magic Kingdom. It looks so different there at night. Everything is all lit up so beautifully and this time of year they have Mickey pumpkins all around. We were thinking about staying for the fireworks show but Nick fell asleep, AJ was falling asleep, and Josephine was getting really squirrelly so we headed back to our room. A consolation, more like a bonus, to going back early is they have cordials and desserts at our hotel.
I'll be honest, the happiest place on earth can be a bit stressful too. With 3 little kids, someone is constantly having a tantrum or crisis. Keeping everyone together while navigating through crowds can sometimes prove to be difficult. But, we pull through in Viner fashion and have a good laugh about it all.
We are super tired every day but we are all here and making memories together. We are beyond blessed!
More magic to come tomorrow!
October 17, 2017 posted 9:08pm:
Part 2 of our day at Magic Kingdom.
The weather was still great and the crowds were thin. The longest ride time we saw was about 80 minutes for Space Mountain. Most of the rides for the little kids were only about 10-20 minutes.
We stopped at the customer service desk at Magic Kingdom this morning and got a special pass because of Nick's heart. It basically works like an unlimited fast pass. We just go to the desired ride and they reserve a fast pass time for us, usually within a short amount of time. As an example, when we stopped at 5:03pm at the Aladdin's carpet ride, the attendant told us to come back after 5:20 pm. The boys waited and were on the ride in about 5-10 minutes. So thankful that Disney is so accommodating to special needs families!
We went on the tea cups and Nick had an absolute blast once we started spinning it. We attempted to go to the Pirates of the Caribbean but it was down even though we scheduled fast passes. Hopefully it's back up and running again before we leave.
We were going to do Magic Kingdom again but think we are going to change things up and try Epcot tomorrow morning. What's not to love about trying food from around the world, "what are you gonna do, I'm a foodie"!
The kids are all already sleeping, woo hoo! So, looks like Jimmy and I will be able to have a mini date by ourselves! We have a private balcony, a direct view of the fireworks, and wine. Does it get any better? 🍷 Cheers!
October 17, 2017 posted 12:48pm:
3 first timers at Walt Disney World today!!
Our first morning session started out a bit rocky. AJ broke off a cap on his front tooth and none of the kids wanted to stay in the strollers. But since it's the happiest place on earth, hard to stay upset for too long.
Nick went on the Buzz Lightyear ride first thing and loved it. We walked around at a very leisurely pace and let the kids soak in the atmosphere. We stopped in for a snack at Gaston's and the big kids (James and I) went on Space Mountain.
Made our way back to the room for a little break and we'll be heading back to Magic Kingdom later this afternoon. The weather was perfectly cloudy with a fantastic breeze and hopeful remains the same later.
"If you weren't you, then we'd all be a bit less we" -Piglet, Winnie the Pooh
October 17, 2017 posted 12:36am:
Mickey was a huge hit! Nick went right up and gave him a huge hug. That's really great for him because he tends to be really shy. In AJ fashion, he about tackled the characters because he was so excited to meet them! Josephine was curious but a bit scared if they got too close to her. James was a good sport and got in on some pictures.
First night is in the books. Tomorrow we will actually go into Magic Kingdom. It's supposed to be a bit cloudy with spot thunderstorms. This may be a blessing as it will keep the temps down and maybe the crowds too.
Hoping Nick can handle the weather
October 16, 2017 posted 5:29pm:
We made it and the view from our room is so amazing!
The kids are so excited to meet Mickey at our late dinner tonight! T minus 1.5 hours. More to come...
October 14, 2017 posted 5:59pm:
A little slap jack action before dinner and Alabama football! Cards are such a fun way to teach numbers and a few letters.
We are staying cool and playing games inside today because we are resting for Disney World. Only 2 days until we take the drive over and the kids get to meet Mickey Mouse!
Hoping your Saturday is filled with a little fun, Roll Tide Y'all!
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October 13, 2017 posted 7:25pm:
The days that are filled with exploring new things, spending time on the beach, and splashing in the pool have been absolutely great. All the moments in between are pretty awesome too!
Enjoy your weekend, wishing you laughter and love!
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October 13, 2017 posted 9:28am:
Life's a Beach!!
Happy Friday from Navarre Beach!!
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October 11, 2017 posted 6:40pm:
Nicholas went swimming for the first time and took to it like a fish! He cried when we tried to get him out. The nice thing is we are only 200 feet from the pool on one side and 200 feet from the sandy beach on the other side.
We went from the pool and walked over to the beach to watch the sun setting. This just might be a little slice of heaven here on earth. So incredibly blessed and grateful to be having these moments together.
Have a great Wednesday, hope it's great!
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October 10, 2017 posted 3:28pm:
Took a little drive and spent some time at the Harbor Walk @ Destin Beach.
This was our first test with Florida heat for the kiddos. Nick was in his stroller with his visor open and we walked around for about 30 minutes. We then went and sat down to eat at a restaurant in the shade with fans. By this time, Nick's cheeks were very red, he was sweating profusely, and also throwing up all the water we had been giving him. We cooled him down with ice packs and a cold water soaked towel.
Nick got a second wind as we were walking back to the car, that's when I snapped the picture. Today's small venture out reminded us to be extra cautious and take it easy. Our strategy during our trip is to do small activities in the morning and early afternoon, indoors during the hottest part of the day, and then back out in the evenings when it cools off.
We are hoping Nicholas can cope with the weather during our upcoming week at Disney. We check in to our hotel next Monday! It's hard not being able to plan or have expectations going into Disney but all we really want is for all of the kids to have some fun!
Happy Tuesday! "Making memories with you is my favorite thing to do"
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October 8, 2017 posted 3:52pm:
Shopping
was on today's agenda. The part of Mississippi we were staying at was
not affected by the hurricane, thank goodness. We called ahead to our
next RV park before we continue on our journey. We got the all clear, so
we will be leaving early
tomorrow morning for Florida!
"The greater the storm, the greater the rainbow" Enjoy the rest of your Sunday!
Happy Saturday! It's a bit rainy today so we couldn't explore too much but we did manage to sneak a picture from Graceland for our photo diary.
We looked up places to eat and since we are in the area, we are going to try Gus's Fried Chicken - World Famous (East Memphis)!
"For my darling I love you and I always will"
October 6, 2017 posted 6:34pm:
We settled into our RV site quickly and the weather was finally nice that the kids got to run around outside. They of course made the playground their first stop.
Tomorrow we plan on stopping by Graceland. I don't think the kids will be interested or have the patience to go through the mansion but hopefully we can get a few pictures at the gardens.
Seems there may be a storm that is trying to meet us where we are trying to go in Florida. Going to have to keep an eye on it and we may need to make a slight change to our plans.
Happy Friday, have a great weekend!
October 5, 2017 posted 4:55pm:
Last day in Missouri today and we are trying to make the most of our time at the RV park despite the rain, bugs, and remoteness. There is a small mini golf course here and so we let the kids test their putting skills. Needless to say, the game took a while and filled up our afternoon.
As we've done every night so far, James, Jimmy, and I will play a few rounds of cards where the winner gets to pick what we eat for dinner. Later tonight we'll hunker down again and get our popcorn ready and watch a family movie. After that, we'll all fall asleep to the gentle sounds of the rain falling on the RV. Life can get so complicated that I really love the simple pace of being on the road. We do have internet and cable, we're not barbarians for goodness sakes!😂
Off to Tennessee tomorrow; No matter how many places we travel to, home is wherever we are together.
October 3, 2017 posted 12:59pm:
We are staying at Deerwood Park Campground in Iowa until we get on the road again tomorrow morning. We got out to explore the playgrounds before the rain sets in. We are only here for a short visit and haven't walked the campgrounds too much but they have multiple kid areas and play sets for the kiddos which is a big bonus for us.
We of course sanitized and washed down the kids during and afterwards. I'm still not super comfortable letting them climb and touch everything but I'm getting better. That said, my anxiety is at a high because even though the temperatures are nice, cold and flu season has started and we are never more than a simple cold virus away from Nicholas landing in the hospital.
As with most things in life though, finding a balance is key! Have a great Tuesday!
October 2, 2017 posted 3:12pm:
Dropped off 6 Nick's Bear Hugs Bears at the post office this morning before we hit the road.
We are starting our month long trip today! The plan is to first stop in Iowa, then visit Memphis, and make our way to Florida. So excited for the "firsts" we are about to experience with them! It will be the little ones first time seeing a beach, feeling the ocean on their toes, experiencing Disney World, visiting new states along the way, and all the other firsts we didn't even think of.
Happy Monday, have a great week!
September 29, 2017 posted 1:26pm:
Happy World Heart Day ❤️
We celebrate this day and spread awareness for all heart warriors past, present, and future!
Have a great weekend and remember that no beauty shines brighter than that of a good heart. Be beautiful.
September 26, 2017 posted 1:09pm:
It's here already, sweater weather! Unfortunately, the weather also reminds us that cold and flu season is here as well. Winter hasn't even come and I'm already counting the days until Spring!
Happy Tuesday, snuggle someone you love to keep you warm!
September 19, 2017 posted 6:35pm:
"Wait for Halloween I cannot. Yes, hmmm."
September 17, 2017 posted 4:49pm:
Hard to get too mad at the Vikings losing today when we get to look at these little faces!
Hope your team did/does better than ours, Happy Sunday!
September 13, 2017 posted 8:19am:
No more fevers since the low grade early this morning
AJ seems like he is on the mend and life is slowly getting back to our normal level of shenanigans.
In his cape and underpants, Nicholas turns into Captain Underpants!
September 13, 2017 posted 9:14am:
He picked out this hat to try on while we were at Target the other day. He's so stylish!
We've recently started letting Nicholas ride in the cart (only after we feverishly wipe the whole thing down with Clorox wipes!). As careful as we are though, AJ has picked up some sort of stomach virus somewhere. We've done our best to try to quarantine him so that Nick and Josephine don't get it.
Nick developed a slight fever overnight that we are monitoring. I suspect that the cause is more from the flu shot he got yesterday than from whatever AJ picked up. Keeping our fingers crossed as we are in the "just wait and see" period. Hoping that Nick doesn't develop anything and that his fever stays at bay. We really don't want to have to take a trip to the hospital if we can avoid it because I always feel he is most at risk of picking something up when we are there.
Happy Hump Day - hoping today will only be a hill and not a mountain!
September 9, 2017 posted 9:17pm:
Feeling grateful to have enjoyed a beautiful day outside. We picked flowers and ran around the yard to feel the grass between our toes.
Keeping all those in the path of the hurricane in our thoughts and prayers.
September 4, 2017 posted 10:17pm:
It's the unofficial end of summer and it was so great while it lasted! We finished it with a neighborhood block party and some dad and son projects.
A few more weeks until we leave for a month long vacation to Florida and Disney World! I hate that we will be at Disney during the start of cold and flu season but we were worried about Nicholas' ability to tolerate the heat of Florida's summer. The weather is more bearable in October and we figured the crowds would also be lower since children are back in school.
Needless to say though, I'm super nervous about Nick getting sick. A large stockpile of disinfecting wipes and sprays just for this trip is already in progress. I'm even contemplating the use of masks to try to minimize our exposure to illness.
This is just another example of how we have to constantly evaluate risks, compromises, and trade offs. Sometimes it feels like Nicholas vs the world. It's our job to try to tip the scales in his favor as much as humanly possible.
Happy Labor Day and have a great week!
August 30, 2017 posted 6:19pm:
This is what a long day of appointments looks like!
We met with Dr. O'Leary at the Mayo Clinic today. After getting past the initial "feeler" introductions, we discussed the current state of Nicholas' health along with his overall history. We talked through all of our questions and concerns.
We needed to establish a whole new medical team since we've moved to Minnesota. After today's meeting with Nicholas' new cardiologist, we will also be setting up his other doctors at the Mayo as well. Because Nicholas is so complex, we feel that it's just easier to have all of his care under the same network.
So with that said, looks like we will have to go back in the fall for at least 2 days worth of scans, tests, and studies. It will provide the needed baselines for mapping out Nicholas' continued care in addition to allowing him to be involved in a medical research study.
The study is for hypoplastic left heart syndrome patients. Although Nicholas technically does not have hlhs, he is a single ventricle patient which qualifies him. The study will look at many different aspects. The use of patient stem cells, patient data, and patient parent's data. Seems like there may be some exciting things on the horizon and we are excited that Nicholas could potentially be a part of it all.
Been a really long day, but he is absolutely worth it!
August 30, 2017 posted 8:39am:
Ready or not, here we come Mayo! Going to be a long day of appointments but at least he's in good spirits this morning ☀️
"Cheese!" Happy Wednesday!
August 25, 2017 posted 11:54am:
I imagine that this will resemble their faces later in life too when Josephine tries to date! 😂
Happy Friday and have a great weekend!
August 24, 2017 6:33pm:
We are trying to get out and enjoy every minute of what is left of our summer. Today was a beautiful day for exploring new things. Nicholas seeing zoo animals for the first time along with his siblings, check! ☑️
Looking ahead, we get to meet our potential new cardiologist at the Mayo next Wednesday. Keep your fingers crossed for us that he will be a good fit.
August 17, 2017 posted 6:11pm:
We avoided so many things for the first couple of years of Nicholas' life. We were so paranoid about exposing him to germs that we lived in a bit of a bubble.
Now that he's 2, we've ventured out a bit more. We are still very cautious and still working to find a balance between letting the kids be kids and being overprotective and germaphobic helicopter parents.
Today we went out again. A simple trip to the mall becomes an epic adventure filled with a carousel and train ride!
All aboard the crazy train, we call life!
August 15, 2017 posted 5:11pm:
Happy Tuesday! Mall of America Rainforest Cafe for lunch, followed by some shopping, and finished off with some rides.
It's a great day, for a great day!
August 12, 2017 posted 11:00pm:
We've had a busy couple of days! Started with a trip to Mall of America for a birthday party at Build a Bear for a cousin followed by some Nick approved cupcakes.
Today we hosted a combined SpongeBob themed birthday party for Alexander and Nicholas. The day was filled with beautiful weather, boat races, jellyfishing, and most importantly our family and friends.
Moving at the speed of life
August 10, 2017 posted 10:56am:
Birthday Boy is 2!!!!
The fears of our reality are never far and we are constantly reminded of Nicholas' fragility every time we give him medicine, feed him through his gtube, and take him to his doctors appointments. But the sum of all of those things do not define him. It's who he is and the life he lives despite those things that make Nicholas extraordinary.
In typical toddler fashion, Nicholas can be impatient, he has tantrums, he gets into fights with his brother over toys, and he tests our patience and resolve. Nicholas is also very clever and witty, he is laid back, he is silly, he is tender, and he is loving.
Today is 731. Many of them were clouded with uncertainty and doubts about whether or not that number would be cut short, but here we are at 731 days you've been on this earth with us. We thank God for every one of those days and every minute and second that fill them!
Happy Birthday Nicholas!!
August 6, 2017 posted 12:14pm:
We will be heading back home and on the road tomorrow so we are celebrating AJ's 4th birthday today.
We couldn't let Nick feel left out though and let him practice blowing out the candles for his birthday which is this Thursday.
We've had a great time in Michigan and want to thank the Douse family for letting us stay with them for a couple of days. AJ had such a great time playing with Dominick!
We also spent a couple of days at the Hidden Ridge RV Resort. Such a great place to roam around, explore, and play with the kids! Last day of relaxing before our journey home.
August 2, 2017 posted 1:18pm:
We had a great time in Kentucky during our first official camping trip in the RV! We are on the move again and are making our way to Michigan for a few days before we head back home to Minnesota.
When talking to strangers about Nicholas having heterotaxy and heart conditions, they often do not understand that although he appears to be a healthy toddler, his little body is constantly fighting a tremendous battle to stay alive. What's even harder for people to understand is that even after his next surgery, he will never be "fixed." There is no operation that can "cure" him. We live together on borrowed time. We all do, it's just that with Nick we are both happily and sadly reminded of that fact. Which is why my biggest hope is that Nicholas, and all of my children, know to their very cores that they are loved.
I'm so glad that we are able to travel safely with Nick and that he is able to enjoy exploring new places. It was very important for us as a family to make memories and experience this awesome adventure together! To jump in the deep end without regret because we didn't want to wait until it was too late. To relish in the things that truly matter, the time we have with each other.
Go and make the memories. Make time to appreciate each other. And always love fiercely.
July 29, 2017 posted 9:46am:
"Beauty is not in the face, beauty is a light in the heart" -Gibran
The kids are having a great time despite the hot days, the rain, and really spotty internet service. Although it would have been convenient for our portable wifi to work so we could stream shows, it's been fun to be "unplugged" for a change.
We've been able to get out a little and explore around the campgrounds and found a small playground the kids could play at (since it seems deserted). Something as simple and innocent as playing at a public playground was a first for Nicholas!
With all the craziness with moving and unpacking the last month, we are going to just kick back, cook s'mores, and relax this weekend!
Wishing everyone a wonderful and relaxing weekend!
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A big thank you to the Johnson family for letting us park our RV and take over their home! It's not an easy task to host our large crew of wildlings...We are so thankful and grateful for their friendship and gracious hospitality!
Now, onwards to Fort Knox where we will continue our adventure. We will actually stay parked there for a week and get a true taste of RVing.
Seein' things that I may never see again
And I can't wait to get on the road again
On the road again" -Willie Nelson
We are making our first official trip where we will be spending more than a night in the RV. We are currently on our way to Kentucky and will be making a pit stop to visit some friends in Indiana tonight. For the the second half of our trip, we will have a short visit back in Michigan before going back home.
1 Dad, 1 Mom, 1 teenager, 2 toddlers, and 1 infant all in our house on wheels for 2 weeks....Wish us luck!
July 21, 2017 posted 12:19pm:
We have the best pickle day helpers!
Wishing you all a great weekend. If you find yourself in a pickle, dill with it!
Happy Saturday, enjoy your weekend!
July 7, 2017 posted 12:47pm:
Boys and their toys! Staying cool in the heat
July 2, 2017 posted 4:19pm:
We've taken a bit of a social media hiatus so that we could get settled in after our move. It's been 3 weeks and we've managed to make things somewhat livable despite the million more boxes set aside that we still have to go through.
In the short amount of time, Nicholas has caught a small cold virus and recovered uneventfully, healed up a couple of fractured legs, helped put in a fire pit, helped put together a trailer for our RV car, went to a drive in movie, watched an awesome fireworks display from the comfort our living room, lounged around in his new chair, ran around the yard after the dog, got a haircut, went out to eat, went out shopping, and just got to be a "normal" energetic toddler!
We hope you enjoy the blessings of freedom and independence during this Fourh of July holiday!
In the meantime, we will be trying to dig ourselves out from the piles and piles of boxes all throughout the house. Can't wait until everything has found a home and is properly put away...which at this rate might be 2 years from now 🤣
Jimmy and I were taking a drive with the kids earlier and we went by a house we almost bought years ago. As fate would have it, we ended up getting orders out of state and the deal didn't go through. We both agreed that had we bought it, our lives would have been so different. We may have never even had AJ, Nick, or Joie.
We couldn't imagine a life any different from the one we have. We may at times be unbelievably stressed but we are truly blessed!
James started high school while being in this house. AJ learned to talk and master walking in this house. Nick was born here and after both of his open heart surgeries, got discharged and came "home" to this house. Josephine was born here and made her first baby milestones in this house. Now this house sits empty as we pulled away and said our final goodbyes.
We left a couple of beers in the fridge to welcome the new tenants. We wish them well as they write their own story in the house. Cheers! 🍻
Thank you to all of the people we've met that will fill our memories of Michigan. A special Thank You to our amazing therapists and health care team atSpectrum Health and Helen DeVos Children's Hospital!
Onto the next chapter of our journey! 🚌
June 6, 2017 posted 2:42pm:
Woohoo, its officially happening! After moving over 10 times, it still never feels real until the movers show up at your door to start packing things up.
Today was the first day of packing, one more packing day tomorrow, one loading day after that, and then we'll be on our way to the next chapter of our journey.
We spent some of the day hanging out in the RV because there are too many moving parts to have little feet running around. AJ got comfy in his new favorite spot on the couch and Nicholas decided the shower was a really fun hiding spot.
It'll be a little sad to leave Michigan but I think the Land of 10,000 Lakes is calling...
June 3, 2017 posted 2:04pm:
We officially bought our RV today! Can't wait to begin our family adventures in it and see where our travels take us.
Where would be your first spot to go or visit? Who knows, maybe you'll spot the Viner RV in a town near you! 🚌
Special shout out to Larry, Jake, and Sherri from General RV CenterWayland! Thank you so much for all of your help in getting us newbies closer to hitting the open road to family fun!
We have so many things to be thankful for and celebrate! Hoping you find your reasons to celebrate too, have a great Friday and weekend! 🎉🎉🎉
May 27, 2017 posted 5:21pm:
We've tried for months to get Nicholas to eat by mouth. We've done tastes of everything under the sun. He decided that a Russo's Pizzawet burrito was the winner!
Usually he takes small tastes and is finished after the first fork or spoonful, but today he kept wanting more. They must put some magic in their sauce! Now, if we could only get Russo's to expand to Minnesota...
As always, Nicholas continues to amaze! We are going to try our hand at taking him to a drive-in movie tonight. Maybe he'll decide to keep eating and discover he likes movie snacks too. Fingers crossed!
May 26, 2017 posted 2:22pm:
Our adventures through the Frederik Meijer Gardens & Sculpture Park today!
Nicholas actually got out of his stroller and played with a few boats in the children's section of the gardens! He's normally very shy but saw his big brother which encouraged him to break out of his shell a bit. We of course sanitized hands afterwards.
Beautiful weather to be outside today. It was warm and sunny with a fantastic breeze. Our outing was great practice for Disney except we were missing big brother who was in school.
We're off to pick up James so we can go check out some RVs. Viner Family Bus, here we come! 🚌
May 26, 2017 posted 7:41am:
"Ain't nothing gonna break my stride. Nobody's gonna slow me down. Oh no, I've got to keep on moving"
Needless to say, the boot was no match for Nicholas. He is walking on his leg and is doing really well on his own. The doctor said we can cast it, boot it, or do nothing to it. The end result would be the same for all, so we figured the boot would maybe help speed recovery. But of course, our kids always have their own ideas about these things.
Later today, we are heading out to Frederik Meijer Gardens & Sculpture Park! So glad we could get out there one last time before we leave Grand Rapids. We were supposed to meet Ellen for our last PT session but her kiddo was a bit sick last night and she didn't want to risk giving anything to Nick. That's another reason we love her so much, she is always so careful and considerate of Nick's health - really going to miss her! We will post some pictures of our adventure for her today.
Afterwards, we're going to do some RV shopping. We figured when traveling with an asplenic heart kiddo, it's the only way to fly. It's also Jimmy's retirement gift to ourselves. We can travel around the country whenever we want and for as long as we want since he'll be on permanent leave! The things we will see and do as a family...I can't wait to start making those memories.
So the mantra for today is Keep Moving, Happy Friday!
We were sent home with a boot and hopefully Nicholas can tolerate it so the fracture can heal faster.
Luckily, an injured leg hasn't dampened his happy spirit ❤️
He didn't cry or even seem to be in any pain but something was definitely not right. Couple hours and an X-ray later, we have a kiddo in a splint that he calls his special shoe.
Follow up with radiology next week to see the progress of his healing. Hopefully they see calcium buildup at the site of fracture and we won't need a cast.
So thankful that it wasn't anything more serious! My mind was racing with the most drastic and dramatic diagnosis I could think of while I was at home with the little kids waiting for reports from the hospital.
Now, trying to figure out how we can keep an overactive toddler from walking and taking of his splint 😳
May 18, 2017 posted 9:55am:
The spoils of having extra medical paper tape around the house!
Hoping you navigate through your Thursday without hitting too many walls!
Nicholas has reached 21 pounds! We are finally ticking upwards again. His progress with drinking has been amazing and now drinks over 9oz a day by mouth. Eating is a bit slower. We are still just exploring more than eating but progress, no matter how small, is progress.
Our personal goal was to get him eating and drinking a little by October. That's when we are planning a family vacation to Disney World. It will be Nick's first big trip! Although he's a bit too young to remember any of it long term, we wanted to do it before his next open heart surgery.
We are purging and cleaning out the house in preparation for our move back to Minnesota. The countdown has started and we only have about 3 weeks left in Michigan. We are also counting down the days until Jimmy is retired from the Army and he only has 2 weeks of work left!
Life is pretty chaotic right now as we prepare for the next chapter of our journey. But I have a feeling, as Mr. Sinatra says, "the best has yet to come"!
May 13, 2017 posted 11:07am:
I love the way they love each other!
This is the best Mother's Day gift I could ask for.
Today we did an evaluation of Nicholas' progress during his PT session. He is at or sometimes even above for his age in every category. To say this kiddo is doing amazing is an understatement and we couldn't be prouder! All this means, although Nicholas' medical condition technically qualifies him for continued therapy, the progress he has made makes him not qualified!
Ellen has been with us on our journey from the very start! From the early first days of rolling, to the days when I didn't think Nick would ever sit up on his own, to now! The best part was that Nicholas never knew he was "working" because Ellen always made it so enjoyable! She also had Alexander to contend with during our sessions but always included him in all the fun!
Thank you for always bringing over your incredible red suitcase filled with wonder and
your always kind, helpful, and encouraging spirit. We will miss you and so appreciate everything you've done for us in helping Nicholas get as far as he has!
May 12, 2018 posted 7:00am:
To those who are struggling with infertility and long to be mothers
To the mothers who unknowingly await their child's devastating diagnosis
To the mothers who are raising warriors because they have to fight
To the mothers that aren't by blood but are in every other way
To the mothers who gave up their children to offer them a better life
To the mothers who are estranged from their children but always hold them close
To the mothers who lost their children and gave them back as angels in heaven
To the mothers that are no longer physically on this earth but forever in our hearts
To the mothers who just simply love their children
We at the Nicholas Viner Heart Foundation celebrate, cherish, and honor all mothers. Warm wishes are sent your way this Mother's Day weekend! ❤️
May 8, 2017 posted 12:44pm:
Happy Monday from the littles!
May 8, 2017 posted 9:06am:
We never really appreciated the role of nurses until we had to. Our family will never be able to convey the depth of our gratitude to the nurses that have been in our lives.
We were so fortunate to have experienced the care from nurses with true empathy. They understood that we needed different things at different times.
They were our relief. When we were running on 20 mins of sleep and we needed to slip out of the hospital room to get some food or air. Sometimes they were even our reminders to do those things.
They were our moments of normal because they were often the only adult conversation we had while in our hospital rooms.
They were our teachers when we would ask a million medical questions.
They were able to just do their job. Without proper bed side manners, they were competent, efficient, and technical because we needed the quiet and wanted to be alone.
They were our cheerleaders and gave us hope in moments when we were barely hanging on.
Our nurses were everyone and everything for us. "Nurses are basically superheroes in scrubs" Happy Nurses week!
Without you, we wouldn't have moments like these. Thank you!
Nicholas says Cheers! Happy Friday!
Like Nicholas, she has heterotaxy and heart defects. Brooklyn is currently in surgery getting the Fontan, the last stage of surgeries to complete the Fontan circulation. That is the same single ventricle surgery that Nicholas will need to get in the future.
Nicholas is giving her 2 thumbs up (although he thinks thumbs are his index fingers) to let her know he's cheering her on! Sending all of our love and positive thoughts for a smooth surgery and fast healing and recovery.
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Bring out your inner rockstar, have a great weekend!
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Life is beautiful, Happy Wednesday!
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April 21, 2017 posted 11:47am:
Happy Friday! Have a great weekend and love fiercely!
"In the blink of an eye
Just a whisper of smoke
You could lose everything
The truth is you never know
So I'll kiss you longer baby
Any chance that I get
I'll make the most of the minutes and love with no regrets
Let's take our time
To say what we want
Use what we got
Before it's all gone
'Cause no, we're not promised tomorrow
So I'm gonna love you
Like I'm gonna lose you
I'm gonna hold you
Like I'm saying goodbye wherever we're standing
I won't take you for granted 'cause we'll
never know when
When we'll run out of time so I'm gonna
love you
Like I'm gonna lose you
I'm gonna love you like I'm gonna lose you"
-Meghan Trainor
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-The Team at the Nicholas Viner Heart Foundation
"Don't you know I'm still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I'm still standing, yeah, yeah, yeah
I'm still standing, yeah, yeah, yeah"
Have a great weekend and Keep Standing!
April 13, 2017 posted 6:21pm:
They said it would be a quick procedure but it turned into an all day event.
Nicholas is a bit congested from allergies so the nasal administration for sedation meds was a no go, which meant it had to be done intravenously. Nicholas has historically been a really difficult stick and no one has ever been able to draw blood or start an IV on the first try, and today was no different.
Nicholas' stats were great throughout the procedure. There was an angle and image though that wasn't easily visible and so there were talks of a having to also do an MRI. Getting a same day MRI was supposed to be virtually impossible but as luck would have it, after a few calls, we were able to get in. In the end though, they got all the images needed and didn't end up having to get one anyway.
No surprises from the echo, which was great news. There are a couple of small leaks in his valve which we've known about and are being controlled currently through medication. They could see a small amount of scarring on one of his SVCs (with his different anatomy, he has two) but it hasn't effected the function and Nicholas doesn't show any signs of distress from complications. All pulmonary veins and arteries looked good. Again, in addition to the images, Nicholas does not show signs of concerns. His oxygen saturations have been in the high 80's low 90's since his Glenn surgery. There was even a small mention of possibly not having to do the Fontan surgery because Nicholas' specific anatomical position and function of his IVC. Regardless, he will have to have another open heart surgery for a valve repair at minimum.
After getting home from the procedure, we started getting settled back in. We had to start feeds, water flushes, and get medicines pushed in to get back on track. Nicholas was NPO (nothing by mouth) since 5am and no feeds since 1am. Just as soon as we started his feed, we get a phone call that said one of his blood draw lab results came back abnormal.
His blood platelets were low, emergency type low. Our cardiologist wasn't completely alarmed and had a suspicion that the results were due to the way the blood was drawn. But because he had a result of 7 when the normal range is from 150-400, we had to get another lab drawn. So after calming him down from the trauma of the morning, we had to go back out and have more blood drawn.
So we went back out as a continuation of what was turning into an epic adventure. We went to the lab facility that is a part of the hospital network which is close to the house instead of the Children's Hospital downtown. Multiple "fishing" expeditions, screaming, tears, and a re-traumatized Nicholas, we ended up with nothing. The blood couldn't be drawn. At this point we were thinking of just going home and trying again tomorrow after we could get him settled, fed, and rehydrated.
We then got a call from the lab we just left. They stated that they called cardiology and we needed to go to the downtown location for the lab. It was imperative we get blood drawn because in the event the 7 was accurate, we would need emergency treatment. Now, we are starting to get a little panicked and start to head downtown.
It was so hard to subject him to torture again. Both his arms were so black and blue that I wanted to cry looking at them as they tried to find a viable vein. Finally, the awesome tech there was able to draw his blood on her second attempt. It was over! I scooped him up and told him we were done even though I wasn't entirely confident or sure we were. I was praying that we got good news because I didn't know if we had it in us to have to admit him. We walked back to the car and went for a long car ride as we waited about an hour for the results.
Phone rings, we got the all clear! The results were in the normal range and our doctor's initial suspicions were correct all along. Better safe than sorry though...
Back home again and instantly we are all relieved and able to breathe again. And so ends today's saga. Just another day in the life of a heterotaxy/heart kid!
April 11, 2017 posted 7:30pm:
Big brothers are for hugging 😍
Got a phone call late this afternoon and they managed to get us in for a sedated echo and EKG this Thursday morning. They mentioned there are two sedation routes; one is through an IV and the other is through nasal administration. There are pros and cons to both and it will be decided the morning of the procedure. Hoping everything goes smoothly, fingers crossed! dit text
So...that means a sedated echocardiogram is in our near future. We don't have a good track record with him coming out of sedation but we really need good images.
On a good note, Dr. Al-Khatib didn't hear a murmur through the stethoscope and seems to think that we will most likely need to do his Fontan surgery when he's around 3 years old-provided that we don't encounter any issues before then.
So for now, we wait.
We have been closely monitoring Nicholas' weight gain and food volumes. But as I was telling Lucy yesterday, we absolutely understand the importance of Nicholas' nutrition and weight gain but I also won't sacrifice his quality of life either. We don't want his life to become all about fighting him about feedings and him being miserable. I love that he can have unrestricted play like a "normal" kid because we give him breaks from eating.
It's a constant balancing game. Nicholas has volume intolerance so getting in the amount of calories he needs is difficult. More volume, even as little as 10ml, can trigger him to throw up which is obviously a step in the wrong direction but we have to continue to attempt increases.
We also have to contend with Nicholas trying to eat orally. Although he wants to eat, his gag is still strong and can cause vomiting. There was a time when he wouldn't open his mouth to try anything and we've been working very hard to get him excited about food. Although our nutritionist wants us to suspend oral feedings until he gains a bit more weight, I don't want to discourage his enthusiasm. After all, the end goal is to get rid of his gtube and eating 100% by mouth.
We've already crossed a big hurdle though and Nicholas can now drink water from a glass. He loves doing it and even asks for it. Huge win in our book!
Echocardiogram and our last cardiology appointment in Michigan is Monday, more updates to come.
Enjoy your weekend because happiness looks good on you!
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March 30, 2017 posted 10:37am:
Happy Twinning Thursday! Little sister Josephine looks a lot like Nicholas 😍
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"Don't ever lose your sense of wonder"
Happy Monday & have a great week!
When Nicholas was little, we did weekly weight checks. We were told that we didn't need to do them anymore but it's something we've acquired as a bit of a tradition/habit. So today we wanted to post an updated Weigh-in Wednesday - 20lbs!!!
We have been on a long and slow journey back to 20lbs. Feeding setbacks and illness both plagued our progress but we are finally making some headway...
Nicholas is throwing up less on a daily basis. He is even drinking a little water by mouth every day and is experimenting a lot more with tasting foods. Although we are still a ways away, we have hope that he'll one day eat by mouth.
Besides weight gain and feeding issues, Nicholas is doing very well. His verbal communication skills have skyrocketed in the last month. His personality is really starting to come out. As an example, the other night he called for "Daddy" to come to him. When Jimmy walked over, Nicholas said "high five". Jimmy then went to motion to give him five and he pulled his hand back and said " too slow!" 😂
Nicholas' motor skills are great and we can't wait for the weather to get nice to run around outside. This will be a whole new world and environment for him to learn and explore.
Looking ahead, the next couple of months are filled with Nicholas' last appointments. The last time with his doctor and therapists here in Michigan as we will have to transition his care to Minnesota; it will be bitter sweet for sure. Our next big appointment will be our routine follow up with cardiology with an echo in April.
Happy Wednesday!
"May your troubles be less and your blessings be more and nothing but happiness come through your door"
Maybe today mommy will get lucky and get to go to the bathroom alone 😂
Happy St. Patrick's Day!
March 12, 2017 posted 3:06pm:
Someone got his first long awaited haircut today! Looks like a boy again!
Happy Sunday Funday!
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March 10, 2017 posted 10:00am:
"To the world you may be one person; but to one person you may be the world" -Dr. Seuss
Have a great weekend! Wishing you all peace and love! ❤
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March 9, 2017 posted 1:18pm:
Nicholas: How do I look? I got them on loan from my buddy, Mr. Potato Head.
Happy Thursday - Embrace your silliness 🤓
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March 8, 2017 posted 11:58am:
Nicholas 1 vs Flu 0! Life has now resumed to full shenanigan mode!
Happy "Guess What Day It Is" day! (Hump Day)
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Ommmm, Stay Calm and Celebrate being Rare because today is Rare Disease Day!
Nicholas has heterotaxy with right atrial isomerism. The prevalence of heterotaxy syndrome is estimated to be 1 in 10,000 and accounts for approximately 3 percent of all congenital heart defects.
Help us be aware because we love someone rare!
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Thank goodness it's Friday! Have a great weekend and seek the things that set your soul on fire!
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Guess which one of the stooges decided not to take a nap? If you haven't already guessed, Nicholas is finally feeling much better and back to his usual self!
Hoping your day has a touch of innocent mischief in it, Happy Hump Day!
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Day 6 of the flu and counting. Just as soon as we thought his fever had finally broken, we just got a thermometer reading of 99 degrees again. The temperature doesn't seem high enough to worry for a healthy kiddo, but for a Nicholas it can quickly become very serious.
It's so nerve wracking to go through being sick with an immune compromised child. We know all too well the potentially horrible outcome if things go badly...so we stay ever vigilant as we constantly monitor his temperature, oxygen saturations, and heart rate.
Amazingly, despite being sick and feeling pretty crummy, Nicholas still manages to smile! Hoping you find your reasons to smile, have a great weekend!
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Day 4 of the wretched flu which has spread throughout our household. Nicholas is pretty miserable with a fever, painful coughs, and runny nose. We've scaled back on his feeds because the coughing caused him to vomit so we are really focusing on keeping him hydrated. Hoping that he doesn't lose all of the weight we've just worked so hard to put on him.
The flu is tough, but this little guy is tougher! Praying we will be approaching the tail end of this thing and on to healthier paths!
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Back home from the hospital. Cultures and chest X-ray checked out but Nicholas did test positive for influenza A. Picked up a prescription for some Tamiflu and we are trying to keep him as calm and comfortable as we can.
We will have to closely monitor him and hopefully we can avoid a repeat visit to the ER.
Thank you all for your prayers and well wishes!
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February 13, 2017 posted 4:38am:
Fever + croupy cough = 4am trip to the ER with Daddy. Praying it's nothing serious and that the visit is a very short one...
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Huge THANK YOU and shout out to Fairfield World!! Look at all the awesome products they sent our way for our Nick's Bear Hugs program. We Love their products and have always used their Poly-Fil to stuff all of our bears. We are so grateful and overwhelmed by their generosity!
Today marks the first day of CHD Week! We are sending out a Nick's Bear Hugs Bear for each day of CHD Awareness week, February 7-14! They will be included in the packages that Lilahroo's puts together every year for CHD kids. So glad we could work with them again this year!
Visit us at nicksheart.org for more information on our Nick's Bear Hugs program and more.
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We Love Tubies! February 6 - 10 is Feeding Tube Awareness week.
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Happy Wear Red Friday!
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Heart month (February) is almost here! Will you join us in wearing red to bring more awareness to heart disease and congenital heart defects?!
We will be wearing red for all women and all CHD warriors! Who will you be wearing red for?
Some special dates to note:
National Wear Red Day: February 3
CHD Awareness Week: February 7-14
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Make every day funday!
Have a great week everyone!
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Look who is a Big Brother!
Born January 14th, Josephine was 10lbs 4oz & 21.5". Baby sister came home from the hospital yesterday and is settling into life with all big brothers! Our Hearts are Full
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Batman says have a great Friday and weekend everyone!
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Happy New Year!