Nicholas Updates - 2016
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We don't know for sure what the new year will bring, but we do know that life is not always about the destination but the journey. As we reflect on this past year, we are very aware that our adventure so far has been filled with countless blessings.
With grateful hearts, we wish all of you a new year rich with the blessings of love, joy, warmth, and laughter. May the new year give you the strength to face any challenge life may bring and the courage to adjust course should the need arises.
Have a great New Year's weekend!
-The team at the Nicholas Viner Heart Foundation
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Merry Christmas! 🎄 Love you to the moon and back
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December 23, 2016 posted 8:00am:
May God’s blessings shine down upon you and your family this holiday season. Wishing you love, peace, and joy.
From all of us at the Nicholas Viner Heart Foundation, have a Very Merry Christmas weekend!
Nicholas: Are you Yeti for Christmas, only four days away!
Now we are waiting for our GI appointment. Hopefully we can get him some relief from the daily vomiting or at least put together a plan to move forward. Fingers crossed, wish us luck.
December 14, 2016 posted 8:34 am:
I saw a post today about someone's schedule and thought to myself, what would it look like if I outlined our day. Here goes:
5-6am:
-Wake up and prep Nicholas' 6 bolus feeding food portions and meds for the day.
-Pick up from the night before anything left a mess in the family room and kitchen.
-Throw in a load of laundry not done the night before.
-Give one med and water flush.
-Sew a portion of a bear, catchup on any nonprofit items, and website maintenance.
-Personal time to catch up on shows or sit in silence with a hot cup of water or hot chocolate (wishing it was coffee but sticking to my personal rule of no coffee during pregnancy)
7am:
-Prep and give first bolus feed.
-Get thrown up on and promptly clean up.
-Calm Nick back to sleep.
8-10am:
-Try to get AJ ready: teeth brushed, bathroom use, get him dressed if time or both toddler boy's behavior allows. More often than not, AJ stays in his PJs.
-Try to prepare breakfast for AJ and eat while Nick cries and wants to be held the entire time.
10am:
-Give meds and water flush.
-Prep and give another bolus feed.
-Possibly get thrown up on and clean up promptly afterwards.
-Calm Nick down from crying episode if he throws up.
11am-1pm:
-Play with the kids: sometimes watch a movie, coloring, building blocks, racing cars, etc.
-Try to prepare lunch for AJ and eat while Nick cries and wants to be held the entire time.
1pm:
-Give water flush.
-Prep and give another bolus feed.
-Possibly get thrown up on and clean up promptly afterwards.
-Calm Nick down from crying episode if he throws up.
2pm-4pm:
-Put Nicholas down for nap.
-Keep AJ entertained but wrangled in so he doesn't wake Nick up.
-Prepare afternoon snack for AJ.
-Attempt to put AJ down for a nap if he's taking one. Hit or miss on naps at his age now.
4pm:
-Give med and water flush.
-Prep and give another bolus feed.
-Possibly get thrown up on and clean up promptly afterwards.
-Calm Nick down from crying episode if he throws up.
5pm-7pm:
-Play and keep boys entertained.
-Try to prepare dinner while Nick cries and wants to be held the entire time. Sometimes Jimmy picks up dinner or needs to make it when he gets home.
7pm:
-Give water flush.
-Prep and give another bolus feed.
-Possibly get thrown up on and clean up promptly afterwards.
-Calm Nick down from crying episode if he throws up.
8pm-10pm:
-Pick James up from school activities.
-Try to get in some family time.
-Attempt to pick up kitchen from dinner. Sometimes it will have to wait until morning.
-Attempt to just sit and wind down. Watch a weekly scheduled tv show and catch up on the events of the day.
-Keep boys entertained but calm. They are usually jumping off walls because Jimmy is home and they are excited to spend time with him.
-Begin to prep for boys to sleep.
10pm:
-Give meds and water flush.
-Prep and give another bolus feed.
-Possibly get thrown up on and clean up promptly afterwards.
-Calm Nick down from crying episode if he throws up.
-Get a load of wash in from the throw ups during the day. Sometimes it will have to wait until morning.
-Attempt to work on sewing bears.
11pm-12am:
-Attempt to pick up living room.
-Finally get to go to bed and repeat next day.
Peppered in throughout the day are baths, diaper changes, bathroom break help for AJ, special projects, grocery shopping, teenager driving practice, regular household maintenance, and toddler tantrums.
When we have doctors appointments for Nick or need to leave the house, everything above but add in more preparation. Gather all needed supplies for feeds and meds in cooler and make every attempt to stay on schedule. Make sure we have a couple of extra outfits and throw up towels. Make certain we have all the sanitizing supplies on hand and extra blankets to cover Nick to shield him from germs, especially during cold and flu season. Bring all normal diaper bag supplies and AJ's backpack packed for entertainment purposes.
When I have a doctor appointment, Jimmy comes home so I can leave alone for the duration of the appointment. That way we can stay on schedule and don't need additional preparation for the outing. Luckily, his work has given him the flexibility to be able to come home when I have appointments. We try to minimize his time off but it's often times unavoidable.
The even crazier thing is I also used to work in a full time job from home in between everything, usually doing the bulk of it between 11pm-2am. Needless to say, that pace wasn't sustainable. Jimmy and I had talked about me quitting after the new baby arrived but as fate would have it, I ended up getting laid off. Although a bit of a personal ego shock to the system and financial blow, a blessing in disguise. I'm so glad to be able to get that off my plate and I now can actually get a few more hours of sleep and stay more focused on higher priority things.
This is a peek into our lives. We don't put this out to prove we have it any better or worse than anyone else. It serves as a reminder that although there ABSOLUTELY will be days that this schedule of ours can drive us crazy and leave us beyond frustrated, there are many MORE days that we are so very beyond THANKFUL to have such full days!
So to anyone who may be finding themselves struggling today, keep strong and carry on! Happy Hump Day!
December 11, 2016 posted 4:20pm:
Baby it's cold outside...but I'm nice and warm inside ⛄️
Hoping your Sunday has been great!
December 2, 2016 posted 1:01pm:
Perfecting his stinker face!
TGIF - Have a great weekend!
November 30, 2016 posted 8:00am:
Can you believe November is almost over!
Happy last day of Movember!
November 26, 2016: We officially have a walker!! Click here for the video link!
November 24, 2016 posted 8:00am:
We are certainly counting our many blessings this Thanksgiving!!
Our thoughts also turn gratefully to you with warm appreciation for your continued support of our journey and organization! From all of us at the Nicholas Viner Heart Foundation, we send our most heartfelt wishes for a Happy Thanksgiving!
(Go Vikings! 😉)
November 21, 2016 posted 10:42am:
Happy Monday!! Can you believe it's almost Thanksgiving already!!
Over the years, when we didn't make it back to Minnesota for Thanksgiving, we usually ended up putting together a rather large gathering of sorts. We always adopted all the soldiers Jimmy worked with that didn't have plans or family near. One year we even did a complete dinner for future soldiers and their families and brought it all to the VFW. It's always such a wonderful time but it can be somewhat stressful and chaotic.
This year, we will be enjoying a quiet Thanksgiving at home with just the 5 1/2 (the 1/2 for Josephine 😊) of us. Happily eating all of our favorite traditional foods accompanied by a day full of watching football! Our team is even playing on Thanksgiving this year-Skol Vikings!
November 16, 2016 posted 4:02pm:
We had a long neurodevelopment appointment today. Our focus was on feeding issues and we talked at length about the new game plan to minimize, if not eliminate, Nicholas' vomiting issues.
One step forward, two steps back...We transitioned fairly well to a pediatric gtube formula a few months back. The nice thing is that it is formulated from real foods. The bad news is that Nicholas continues to vomit at nearly every feed. That coupled with a more active kiddo who needs more calories but can't take on more volume, we ended up losing nearly 2 pounds. The coveted 20 pound marker was achieved with such excitement but we've now slipped back just below it again.
2 pounds may not seem like a big deal but it was so disheartening to see because we work very hard to get Nicholas to keep down every calorie we can get in him. The new game plan includes adding peanut butter, oats, and yogurt into his the pediatric gtube formula we've been using. Crossing our fingers this helps. We are adding a stronger reflux medication to see if that helps and we also have a referral to see a gastroenterologist in the coming weeks if we are not seeing improvements from the new feeding plan.
Feeding issues aside, Nicholas is doing very well. He has such a sweet disposition and is so curious about the world around him. He is still reluctant to walk unassisted but we're not in a hurry because we know that he does things in his own time. It was only a short time ago that we didn't know if he'd ever even sit unassisted!
Wishing you all a Happy Hump Day - May the rest of your day be an easy slide straight into the weekend!
So as they say, we keep on keeping on!
November 11, 2016 posted 7:00am:
Happy Veterans Day. We thank and honor all who served!
"This nation will remain the land of the free only so long as it is the home of the brave"
November 9, 2016 posted 4:33pm:
In the midst of all the election commotion, one thing is for sure, it's back to business as usual in our house!!
We are incredibly blessed and thankful for so many things, especially our silly goofballs!
October 31, 2016 posted 9:57 am:
BOO! Happy Halloween.👻 The sweetest treat is that we had a year of spooky fun! 🎃
October 28, 2016 posted 2:19 pm:
Life is never dull with these two bucket heads!
Hoping you get a chance this weekend to embrace your inner child and experience some silliness of your own!
October 26, 2016 posted 3:51 pm:
We had our routine cardiology appointment and it went very well. EKG and echo both were good. Our cardiologist said he couldn't hear a murmur in Nicholas' heart at all and that his lungs sound perfectly crystal clear. Nicholas' single ventricle is doing well and the leak in his valve was only trace, as before, with no new changes so we've been cleared for another 6 months until our next follow up!
His oxygen saturations have consistently stayed in the upper 80's to low 90's. Blood pressure looked pretty good but we are increasing his Enalapril dose slightly in relationship to his weight but he is still on the very low end of the medication dosage.
With the all clear on the heart front, we are staying focused on our challenge with feedings. We've made some huge strides by getting him off the continuous pump feedings to feeds 5x per day-every 3 hours. He still vomits every day though, so needless to say, we go through a lot of outfits and spit up towels. We've tried erythromycin for a month but we didn't find it to be beneficial and preferred him not to be on multiple antibiotics if it could be avoided anyway.
Next month we have another neurodevelopment appointment where
we will readdress our feeding issues and regroup with our nutritionist. I'm hoping to be able to keep his weight stable through all of the changes but he's already lost a bit but is still hanging on above 20 pounds.
On a bright note with feeds, Nicholas is more willing to put food in his mouth. He doesn't actually want to keep it in there but at least he's willing to bring food to his mouth for tastes. He has also taken the tiniest of sips of water from a sippy cup. Progress no matter how small is still progress!
With intermittent feeding breaks throughout the day now, Nicholas is really cruising around and enjoying his untethered freedom. He is so close to walking but just lacks a bit of confidence as he is still reluctant to fully let go. It is so fun and such a gift to see his world opening up through his eyes.
"It's the possibility that keeps me going, not the guarantee."
October 21, 2016 posted 12:34 pm:
AHHHH, TGIF!! Happy Friday - have a great weekend!
October 7, 2016 posted 9:18 am:
"There's no load I can't hold
Road so rough this I know
I'll be there when the light comes in
Just tell 'em we're survivors
Life is a highway
I want to ride it all night long
If you're going my way
I want to drive it all night long"
Happy Friday, hoping everyone cruises into a great weekend!
September 29, 2016 posted 1:42 pm:
Happy World Heart Day! ❤️
Heart disease and stroke are the world's leading cause of death. At least 80% of premature deaths could be avoided - the main risk factors being smoking, unhealthy diet, and inactivity.
So get up and get moving. Nicholas is doing his part by helping mommy with laundry!
September 16, 2016 posted 10:20 am:
They say that necessity is the mother of invention... And since a continuously tethered tube fed kid and mobility aren't always the best fit, we've modified our walker a bit.
No unassisted steps yet but Nicholas is cruising along all the furniture and anything that he can use as support. I'd guess that by Thanksgiving or Christmas, we may have a little walker.
As Nicholas is getting bigger and more independent, he's showing more of a personality and is more feisty and fun! He loves music of all kinds and will stop what he's doing just to dance. We've also started the brotherly disputes regarding toys and Nicholas will express himself vocally if he thinks Alexander is hogging the toys, which happens more often than not since big brother is 3 years old!
Nicholas says a few purposeful words like uh-oh, up, momma, & dada. We continue to work on expanding his vocabulary with the goal of turning his babble into more meaningful words. He mimics sounds brilliantly, admittedly sometimes to our amusement- he's spot on when it comes to his Mighty Eagle call from Angry Birds 😂
We've been slowly transitioning to a new formula that has real foods with the future goal of doing a blended diet. So far so good, though we still deal with issues of vomiting due to slow motility. By next week we will start to introduce some bolus feeds during the day and Nicholas will get a few extra hours of complete freedom of being off his feeding pump.
The hope would be that we could decrease the continuous feeds and get into a more normal eating pattern, maybe even encouraging hunger cycles. The total end goal is for him to eat by mouth but that seems to be a far stretch still... We're just glad he is able to get the nutrition he needs, no matter the method.
An echo and cardiology follow up is on the docket in the coming weeks. Also, we've been able to enjoy going out this summer which has been fun but it's nearing time for our family to go into hibernation and lock down mode for cold and flu season. Our family trips to the store for groceries or shopping mall will become a distant memory and our adventures will only extend to the occasional car ride until next spring/summer.
Happy Friday- Here's to enjoying the few remaining nice weather weekends before the cold and snow!
September 9, 2016 posted 11:17 am:
"Yesterday is history, tomorrow is a mystery, and today is a gift. That's why we call it the present." Happy Friday!!
September 7, 2016 posted 10:01 am:
Umm, does this scale make me look fat?
Finally got over the hump! We've been on a weight plateau of being in the 18ish range for months and today he tipped the scales at over 20lbs! Happy Hump Day!
September 3, 2016 posted 12:51 pm:
Jedi training at the grocery store!
August 26, 2016 posted 1:28 pm:
Happiness is having an older brother who plays with you! Happy Friday Everyone!
August 17, 2016 posted 11:42 am:
What a difference a year makes! One year ago today, we handed you over to the doctors and surgeons for your first open heart surgery. After what felt like a never ending wait, we finally got to see you.
What we saw next will be forever burned in our memories. We were so relieved to hear things went well but the words seemed a bit hollow because although you were in front of us, there was only a trace of the baby we had left earlier that morning.
Surgery left you swollen and sedated. We waited helplessly for signs that you were still in there, while your little body was continually fighting to adapt. We were in such awe of your amazing resilience and you had indeed found a way to pull through and find your way back to us.
We are taking a moment to reflect and appreciate how far you've come! We are so blessed to be on this journey with you and witnessing how far you will go!
August 10, 2016: One year ago we were heading to the hospital to welcome the arrival of our third son. We were filled with anxious excitement as any expecting parents, except we also were consumed with an overwhelming fear of the unknown. 5 months prior at our routine ultrasound, we were told that our son had heterotaxy and severe congenital heart defects. Heteortaxy causes organs to form on the opposite side of the body. It can affect the liver, lungs, intestines, spleen but usually always involve heart defects of varying types and severities. We found out our unborn son Nicholas had among the most complex heart defects along with a right sided stomach, midline liver, intestinal anomalies, and the absence of a spleen.
Our world came crashing down. One minute we were anticipating finding out the gender of our third child to finding out that there were several health concerns and issues with our son. In those incredibly difficult and dark days, we found ourselves mourning the loss of the life we had once envisioned and we were trying to come to terms with the one that was to become our new reality. The prognosis of these medically fragile children was grim. 1 year survival rates left so very little hope for us to cling to. There were so many questions. Would Nicholas even survive birth? Would he come out crying or would he be blue? Would we be able to hold him after birth? Was he going to stay alive?
All the months of building anticipation, and the day would finally arrive. The birth was uneventful, apart from the entourage of staff in the room who were all waiting for him. We welcomed Nicholas Jameson to the world on August 10, 2015 at 9:56pm. He weighed 8lbs 9oz and measured 19 ¼ inches. He came out looking perfectly pink and screaming. We even got to hold him for a few precious minutes before the team swooped in to take him to the NICU. He would stay there until his first open heart surgery at just 7 days old.
In the first months of life, Nicholas would undergo 2 open heart surgeries and a stomach surgery. We know that there will be at least one more upcoming heart surgery in the next couple of years. Having to hand over your child to doctors and surgeons is one the most heart wrenching things a parent has to do. Not knowing if the kiss you give them or the goodbye you whisper to them will be the last. Having to wonder if the child you left will be the same one that will greet you on the other side of surgery? As you sit impatiently for hours, thoughts of warriors past start seeping into your mind. The questions of the unthinkable start setting in and you have to remind yourself to have faith and trust the journey.
We know all too well of just how fickle and fragile life is for those with heterotaxy and heart defects. We’ve celebrated milestones and mourned the losses of those in the community as if they are our own. Our family has been very fortunate thus far, as Nicholas is doing well overall. That’s not to say that we’ve been without some challenges and bumps in the road. Our normal now consists of pediatricians, cardiologists, PT, OT, nutritionists, neurodevelopment appointments, speech therapy, and daily medications.
And when asked if we would do it over again, ABSOLUTELY! We still live with fears and uncertainties for Nicholas’ future but the difference now is that we aren’t consumed with them. We’ve come face to face with how fragile this life is and we’ve learned to fully appreciate every moment with gratitude filled hearts.
Nicholas is a true living testament to faith, hope, and love. It is with sheer joy and amazement that we celebrate an unbelievable milestone, Happy 1st Birthday My Love!
July 29, 2016 posted 2:42pm:
Whoa, I have a long way to go! Maybe one day I'll be that big 😊
Happy Friday, have a great weekend!
July 25, 2016 posted 1:16pm:
We had an eventful past week and weekend. Nicholas went on his first road trip as we journeyed over 570 miles from Michigan to Minnesota where most of our family and friends are.
Many new faces and places to see made for an exciting time for Nicholas. This was the first time for many to meet him and it was so great to finally be able to share him. (With crazy amounts of hand sanitizer of course! )
One main objective of going back to Minnesota was to finally do Nicholas' baptism. We've had to hold off travel due to his surgeries and because we did not want to travel during cold and flu season. We are so grateful that we were able to celebrate this special day.
We were once again reminded of how extremely blessed we are as we reflect on this fragile journey we find ourselves on. We did not choose between Robert Frost's two roads that diverged. God chose to set us on the path less traveled and it has made all the difference!
July 18, 2016 posted 9:54am:
Because I have a brother, I'll always have a friend ❤️
A big Thank You to Aimee Anne Photography for sharing a sneak peak and doing the shoot for us!
July 10, 2016 posted 10:46am:
Nicholas: Happy 11 months old today!!
We can hardly believe that we are only one month away from our little guy's first birthday! The 1st birthday for any child is an exciting milestone, but for us it will be even more so because the prospect of reaching this marker was so uncertain. Our future may still be unclear but we have today and are making it count!
We would love if you would help us celebrate Nicholas' first birthday! If you feel so inclined, please send Nicholas a card, make a small donation, or send a toy that we can donate as a part of our annual toy drive for theHelen DeVos Children's Hospital.
Please mail cards, checks, & toys to:
2939 Wilson Avenue SW #86
Grandville, MI 49468
Donations can also be made by following the link to our website nicksheart.org. Click the "donate" button on the bottom of page.
June 17, 2016 posted 9:52am:
Nicholas has the best Daddy! He has been there every step of the way ❤️
Celebrating all Fathers, past and present, Happy Father's Day Weekend!
June 16, 2016 posted 4:01pm:
He sure makes working out look fun!
June 10, 2016 posted 11:04am:
Look who is SO BIG! Happy 10 months old today!
June 6, 2016 posted 11:22pm:
It's been a while since our last update. We have since adjusted to life with a gtube. Nicholas still has feeding volume intolerance issues and he's not taking to solids very easily just yet. A mobile baby and an attached feeding line equals trouble! We have to constantly untangle him, especially when he goes into his alligator rolling mode.
At our last well baby checkup, Nicholas was only in the 8th-9th percentile for weight and height and 60th for head. We like to think we have our very own big brain Boov (from the animated movie Home). We were told not to be too concerned about weight gain since he is doing well. It's a bit surprising he's so low on the growth charts because he doesn't look like he misses any meals and sports so many baby fat rolls, they must just be well placed for cuteness effect!
I think crawling is just on the horizon for us as Nicholas has all the individual mechanics down, just a matter of putting it all together. Still a little wobbly when sitting independently. Partly because he's a mover and can't seem to ever sit still and probably also partly because of his big head!
We are monitoring his stats as usually but keeping a closer eye on his oxygen saturations. We've been noticing a very slow and slight uptick. He started out around 89-90 post surgery and he's been creeping up to averaging in the 93ish range. We've even gotten him as high as 96. That's when we called cardiology to check in since we were prepped to expect to see his numbers start to decline as he becomes more upright.
We are to call cardiology again this Thursday and give them what our average has been over the last 2 weeks since we first called. We are trying not to get too worked up right now about it since he is otherwise behaving and doing very well. But as parents to a medically fragile kiddo, there is a space that is constantly reserved and occupied with worry and memories of past hospital stays.
We have his milestone of turning 10 months old coming later this week. We can hardly believe he's nearing this first birthday already!
Have a great week everyone!
Have a great Memorial Day weekend everyone!
Memorial Day goes far beyond mall sales and barbecues. Please take a moment this Memorial Day from your day of celebration and leisure to reflect on the brave sacrifices of those who have given their lives for this great nation.
May 16, 2016 posted 12:03pm:
This was specially picked to help start your Monday off right! Have a great week!
May 10, 2016 posted 8:32am:
Happy 9 months old today!!
April 28, 2016 posted 6:33pm:
We had a very nice visit with grandparents and Nicholas got to go on his very first outdoor outing to the Fredrick Meijer Gardens.
Our biggest challenge is and always has been with feeding. One step forward, 3 steps back is kind of par for course. We are still just doing tastes of foods and playing with sippie cups and baby puffy snacks. This is the only area we have been experiencing setbacks, feeling extremely blessed for that!
We had a fantastic cardiology appointment on Tuesday. An echo and EKG was done as usual. The doctor doesn't hear a murmur in his heart anymore and all of Nicholas' images and stats look great. We don't need another cardiology appointment for 6 more months!
Nicholas has achieved a new milestone, he's now rolling! I feel like we'll have a crawler on our hands in no time! We got to meet Alyssa this week. She will be helping us with our weekly physical therapy and taking over for Ellen who will very soon be on maternity leave. Nicholas will miss her and wants to wish her and family all the best!
Lately, we have been loving our little vampire smiles! Two upper teeth have come in but the gap between them will be filled soon because one front tooth has already broken through in the last couple of days.
We are entering a new phase where we feel we can breathe a bit more. We can now just enjoy taking in all of the exciting times that are ahead!
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March 25, 2016 posted 2:14pm:
Wishing everyone a very Happy Easter Weekend!
March 24, 2016 posted 1:24pm:
Such a BIG boy! He's not actually drinking from his cup but maybe someday soon!
Life with a g-tube is going okay. We are thankful we don't have to struggle with the tape on the face and we know Nicholas is thankful to have the NG tube irritation out of his nose and throat.
It's been 3 weeks since his placement and are still adjusting. We've continued to work on food volumes and concentrations. We are now back up to 27 calorie concentration and his pre surgery volumes. In the last few days, we've also moved him from the continuous pump feeds to gavage gravity feeds through the day and the pump overnight.
The g-tube site is still red but not infected and is from the small amount of stomach leakage he has which is irritating his sensitive skin. I hear he may always have some leakage and it could always stay a bit red. We've been using some homemade pads which seems to be helping a bit though.
We are celebrating our small victories: accepting tastes of puréed baby food by mouth and playing with a sippy cup and simulating drinking! Later this week, we may even try some baby biscuits or snacks he can pick up!
We are cherishing every moment because like all kids, Nicholas is growing up so fast!
March 20, 2016 posted 3:15pm:
Somebunny can't wait till Easter Sunday!
March 17, 2016 posted 10:28am:
Wanna kiss me? I'm Irish!
🍀Happy St. Patrick's Day🍀
March 10, 2016 posted 8:30am:
Happy 7 Months Today!!!
March 7, 2016 posted 4:24pm:
Ahhhhh, Happy Monday!!
I think someone is enjoying not having his NG tube and tape anymore! We've also been able to get him back to full feed volumes today.
This kid...so amazing...we are beyond blessed!
March 3, 2016 posted 9:30pm:
Guess where I am?!!
We were discharged early to ramp his food volume up in the comfort of our house! Thank you to the nurses and doctors who supported us to make this happen!
March 3, 2016 posted 7:08pm:
"The force is strong with this one."
Look who stopped by our room for a visit!
March 3, 2016 posted 11:21am:
We have food running into his tummy! Keeping our fingers crossed that he tolerates it.
The plan is to go really slow. We are starting at 10ml per hour and being bumped up by only 5ml every 3 hours.
When he reaches 20ml we can bump him up by 10ml every 3 hours, provided that he is still doing well.
Once he hits close to 40ml per hour, we can entertain the idea of going home! According to the above schedule, we should hit our goal by 10pm tonight so discharge is likely tomorrow.
March 2, 2016 posted 7:23pm:
We are being monitored by PICU but we are physically on the step down unit floor. The doctor said everything went well and that his stomach moved into position great. He also said that Nicholas' stats were very stable throughout.
Coming out of sedation is always a touchy area. Our little guy likes to go crazy tachycardic on us and hang in the 200's! (High heart rate). He is not on oxygen and as the sedation is wearing off, he is slowly climbing back to his baseline which is high 80's to low 90's. His throat is definitely irritated from the breathing tube and sounds a little strider- wheezing kind of sound when breathing.
Trying to keep him calm and comfortable is our goal tonight. A little morphine and Tylenol will hopefully do the trick. Fortunately, he's taking a little snooze now...
No feeds tonight, so he has an IV line running near his ankle. Tomorrow we should begin feeds through the g-tube for the first time.
We are hoping he does well and tolerates everything so we can get home quickly. The hospital isn't the best place to be with all the sick patients around during this RSV, cold, and flu season!
Thank you for your thoughts and prayers!
March 2, 2016 posted 4:02pm:
Nothing like talking to the doctors prior to surgery to get your nerves working in overdrive...
Dr. Decou was about 90% sure from all the films that Nicholas would NOT be getting the Ladd's done today. He will take a look to make sure everything is the same while he has the scope in. The intestines are abnormal but there are no indications at this point for malrotation or concern about developing volvulus.
The g-tube placement surgery is not straight forward because of Nicholas' heterotaxy. His stomach being on the right side is not the issue, the fact that his liver is large, midline, and in front of it is. Getting to the stomach and having the liver in the way puts him at higher risk for bleeding.
They are also having to fill his stomach with some air for the laparoscopy which can also negatively effect cardiac kids.
The anesthesiologist is planning on putting in an arterial line so that they can draw blood to closely monitor him throughout the procedure. Nicholas has always been difficult to get IVs or other lines in. It took about an hour today which was pretty fast for him.
Total surgery time was estimated to being around 2 hours but it all depends on how things are going.
March 2, 2016 posted 1:33pm:
We are in the surgical prep room. The case before us was running a bit late so we are looking at a start time closer to 2:30.
Nicholas is of course his happy self! We are just hanging out waiting to talk to the anesthesiologist and surgeon before he's taken back to the operating room.
More updates to come..
February 29, 2016 posted 8:40pm:
Say Whaaaat!!?? Surgery scheduled for this Wednesday!!
G-tube placement is planned to be done laparoscopically and will consist of three incisions; his belly button, the site of the tube, and one more small one parallel to the tube.
We also discussed adding the Ladd's procedure due to his intestinal anomalies and the elevated risk for the sudden onset of developing volvulus. The surgeon is reviewing his films to make a determination.
Although it's not quite as serious as open heart surgery, its still nerve wracking! Surgery is surgery and there are always associated risks. We ask that you please keep him in your prayers!
February 28, 2016 posted 12:01pm:
Is he sporting a new beard? Did he get cheek implants? Good guesses, but no. It's just some paper tape and gauze pads to keep him from rubbing off the cream on his cheeks.
We took his feeding tube out and gave his cheeks a break. We are so frustrated and exhausted by dealing with tape! His poor face is so sensitive and it gets so irritated that it bleeds. Anything we put on topically gets rubbed off almost instantly so we have to resort to these crazy facial mummification type methods! 😆
Our appointment tomorrow with pediatric surgery couldn't come fast enough! We should get our surgery date for his gtube.
This kid amazes us and manages to keep smiling through everything!
February 16, 2016 posted 2:52pm:
We had our appointment with neurodevelopment today. Other than the expected gross motor issues associated with his lack of tummy time, Nicholas is right on track with his age.
His height and weight were both in the 15th percentile which is good for him. He is starting to trend upwards again since we've increased his formula concentration.
Dr. Dodge was on the exact same page as us and recommends getting a gtube for feedings. We have a pediatric surgery consult for the end of this month and more than likely we will be back in the hospital for the gtube placement surgery by the middle of March. Not looking forward to that since our little guy doesn't wake up from anesthesia well. We are already expecting that what should be a short visit will turn into a week long hospital stay.
Nicholas is doing very well. We have not had any issues (knocks on wood) post surgery. He has a little bump along his incision this time around due to the way the bone healed. It doesn't seem to bother him yet but may need to be corrected during his next open heart surgery in a few years.
Today we put the check mark in the win column!
February 14, 2016 posted 8:43am:
Will you be my Valentine?🌹Happy Valentine's Day! ❤ #CHDaware #HeartMonth
February 10, 2016 posted 10:29am:
Happy February 10th! Nicholas is 6 months old today!!
I remember how devastated we felt when I was pregnant and we received the diagnosis of heterotaxy and complex heart defects. Hours were spent scouring the Internet trying to find out as much information as we could. I eventually found a great support network on Facebook in the Heterotaxy Connection. I would read all the posts trying to match or find similarities with what our little guy's anatomy and diagnosis were. I would quickly find out that no two heterotaxy patients were the same.
But more than that, ultimately what we were looking for was hope. We were given a lower than double digit chance of survival and it was difficult to know where to go from there. We found slivers of hope when we would see pictures of kids who were making it.
Today, We find ourselves with one of those special kids. Although there is so much more that could be said, we are just extremely grateful and in complete awe of him and in God's grace every day. We try to take every opportunity to share our journey with Nicholas in hopes that maybe our story can pay it forward and give someone else hope.
Nicholas is 6 weeks post Glenn. RAI, multiple heart defects, single ventricle, right sided stomach, midline liver, intestinal anomalies, asplenia, AND..he is alive!
#BeatingTheOdds #HeartMonth #CHDaware
February 5, 2016 posted 10:01am:
Today is National Wear Red Day for heart awareness! Who are you wearing red for?
Nicholas is wearing Red for all of his heart warrior and heart angel brothers and sisters!
February 3, 2016 posted 4:34pm:
Every parent knows about baby milestones. They are the things we use to measure progress. For some they are used to brag with parental pride if met early or a cause for concern if delayed. We find out quickly though that our children are their own person and they do things on their own time. Heart children are no exception despite their obvious setbacks.
Because Nicholas hasn't had much tummy time due to his feeding issues and the time needed for surgery recovery, he is technically behind as far as his muscle tone. He is just now able to hold his head relatively steady. Seeing him in his play chair we get to check off our biggest milestone - him being alive! ❤💙 #CHDaware #HeartMonth #BeatingtheOdds
Happy to be celebrating with GramE (Grandma Erin)!
January 7, 2016 posted 1:10pm:
Ever get the feeling your stuck in a reel like it's Groundhog's Day? That's what hospital life feels like; all your hours and days just bleed together. You start the day with hopes of discharge and soon after find out it's been delayed for one reason or another. So you buckle in for yet another day and hope that the next morning brings different news. We first thought discharge going to be this past Monday and it's now looking more like tomorrow, Friday.
Nicholas is doing great. They just want to keep him overnight to ensure he is tolerating his full compressed feedings which are set at 100ml per hour every 3 hours. They are transitioning him slowly and started at 100ml over 2 hours. Nicholas was getting continuous feeds by pump at 30ml per hour since surgery.
At least he doesn't seem too bothered by being here and smiling more each day.
January 6, 2016 posted 3:17pm:
So we are still at the hospital... Although we are super anxious to get home, we really do appreciate the medical staff here at Helen DeVos Children's Hospital for being extra cautious and taking so many precautionary measures to ensure that we are getting the best care for our little man!
As far as the cardiac stuff, Nicholas is doing great. There were concerns with his bowels as some of the loops were distended and a couple of stool samples tested positive for blood. Long story short, we have had around the clock X-rays taken every 6 hours to monitor and compare. We also have had consults with GI and general surgery.
Just today we have been allowed to go to half formula and half pedialite feeds and later tonight will go to full formula. We are going to move to compressed feeds tomorrow which hopefully is our ticket to getting discharged.
The last couple of days have been tiring. Every time we got Nicholas calm and sleeping, someone always came in the room for one thing or another which woke him up. With less interruptions today, he is finally getting some much needed rest!
Hoping that the next update from us is that we are going home!
January 4, 2016 posted 7:02pm:
What a difference a day makes. Someone is starting to feel like himself again!
We got our first smile since coming out of surgery!
January 4, 2016 posted 12:56pm:
Yesterday was a bit challenging and a difficult pain day for our little guy. He was either outright screaming crying or moaning crying. We ended up giving him a small dose of morphine last night to help calm him along with Norco that he started getting every 6 hours.
All of his stats looked good, except the elevated heart rate which can be attributed to him being upset and the pain he was feeling. Trying to figure out the source of the problem we tried a few things.
Jimmy thought his fontanelle (soft spot) felt a little lower than usual and so he got a little albumin. They also took another set of X-rays of his chest and abdomen. We have been keeping on eye on some air that was around his belly since surgery to make sure it wasn't getting worse and in the tissue. The air will eventually be absorbed by the body but may be making it uncomfortable for him. Best way to describe it is that it feels "crunchy" when you press softly around his belly.
X-ray came back and showed the air wasn't getting worse but that his bowels were pretty distended. So we stopped his feeds just in case that was the issue and substituted with IV fluids.
We then needed to get, yet another scalp IV for the fluids after his arm swelled from the failed IV. It was placed on the side of his head after a few failed attempts on the top.
One or a combination of things that were tried finally worked as he settled down and was able to sleep.
Today we are working on getting some relief to his tummy. There's always an elevated concern when it comes to his stomach and intestines due to his Heterotaxy. We have to be mindful of the potential for higher risk of malrotation due to his anatomy. They added a suppository this morning and started feeds again but slowly and incorporating miralax. Should make for an interesting afternoon once everything kicks in...
Hoping we can stay on track to be discharged tomorrow.
January 3, 2016 posted 12:12pm:
Nicholas continues to do well. His stats are holding steady with oxygen saturations in the 80's. His blood pressure is under control as the new medication seems to be working well.
The only challenge we are currently working through is getting his pain management under control. Tylenol wasn't quite cutting it and we decided he needed something a bit stronger to help him relax so he can continue his healing.
Nicholas is still not quite himself but has moments where he wants to play and today he reached out to grab daddy's scruff. We are anxious to see that smile of his come back in the coming days.
There's been whispers of discharge in the next day or so... keeping our fingers crossed!
January 2, 2016 posted 11:49am:
We are out of intensive care and in the step down unit!
He's settling in and looks pretty comfortable!
January 1, 2016 posted 9:22pm:
He is doing much better tonight. Elevated white blood count from earlier is being watched but his progress today helped to quell those concerns. Nicholas still has some crud in his throat he is working on getting up. It causes him a little discomfort when he coughs because he still has a bit of inflammation and irritation in his upper airway, but his lungs sound clear. He is not on any oxygen and got his nose cannula removed earlier today.
Nicholas was put back on continuous feeds through a feeding pump. A couple huge dirty diapers today gave him some much needed relief to his full tummy.
His blood pressure is still on the high side of the parameters set for him. There was already an increase to the medication given for it and is being monitored closely.
He is not on any sedation medications and all narcotics have been weaned with the last dose administered earlier today. Pain is currently being managed by tylenol and toradol as needed. He is not quite back to his usual smiley self but we know he'll get there soon enough. Hoping for continued rest and healing.
The first day of 2016 for Nicholas can be marked as a win!
January 1, 2016 posted 7:27am:
Happy New Year! 2016 has started off with a bang and has been pretty eventful.
We've been battling issues all yesterday with his oxygen saturations. Nicholas will have bouts where he is resting comfortably and at 70's to 80's (we'd like to see 75-80's) then they tank to 40's to 50's.
He had some chest X-rays done as his left lung was really diminished. Another breathing treatment was administered. Stats following the treatment were great and sailing comfortably in the 80's. Soon after, headed back into the on and off destat bouts.
This morning, he just got another follow up X-ray taken and given another breathing treatment. Seems to be a direct correlation between treatments and better stats. He seems to still be having issues with his upper airway- probably just inflammation which is to be expected. Feeds were stopped and he was put back on fluids since he has stomach discomfort as well. No bowel movements since pre surgery. White blood count was elevated and is being looked into further since it might indicate infection.
I'd say that a fitting theme and resolution for us this new year is to just breathe: Breathe in the good and release all things negative. Take in all of life's sweet moments and when things appear to be to be getting too tough, just remember to breathe.
Wishing everyone health & happiness all the days of 2016 and always.