A new Outlook...

As I was posting the most recent birthday post, I realized for the last three years I only had 15 posts and in the first three years I had 135 posts.

 As always I have said that no news is good news in the heartland. Much of the first thee year's updates were our day to day lives in order to document our journey -  the good, the bad and the ugly.

The original purpose of this blog was to keep family and friends updated on how Jasiu was doing so that friends and family, whomever was interested, would get up to date information.  As we have progressed in our journey and our life became  more and more "normal" I have failed to update because we were living our lives. At the same time, I began to have more and more time to devote to helping newly diagnosed families and show them hope and the joys that this journey can bring.  As I was talking with some of the families I was paired up with, I often pointed them to this blog to give them a glimpse of our day to day lives were in the beginning  because that was their #1 worry and they read all about our hospital stay experience and how we dealt with all of this.  I now realized how scary that must be to read, even though our journey has been relatively "easy".  I know, I did the same when we were diagnosed.

One day at a wedding we attended, I met a woman who came up to me and said these exact words "You don't know me, but I know you very well". This may sound strange at first, but turns out that she heard from a friend of a friend of a friend who had a "child with a heart problem"  and I'm not exactly sure if she googled our blog, or someone pointed her to it, but she found my blog. Turns out she had a little girl born with a large VSD and was for lack of a better phrase, heartbroken. Her daughter's heart  had to be operated on shortly after birth. She said that during her daughter's hospital stay she read our entire blog and got courage that if we can get through HLHS, they can get through their journey too.  She was the nicest lady and we connected right a way. The heartland does that to people, it's the club you hate to be a part of but you are thankful when you find others like you that you can support each other. This scenario is fine if you are thrown into the heartland unknowingly, after birth of the baby. However being prenatally diagnosed, reading the first two years of our journey can be scary. And it's not an easy path to choose, but it can be as good as you can make it.  Where there is a will there is a way.

So in the spirit of trying to provide more hope, my goal will be to post more often our everyday accomplishments hopes and dreams. Hopefully seeing all the positives of this journey will give strength and courage to as many families  affected by congenital heart defects to choose to walk this path that they were given bravely and with hope to live each day to the fullest.  

Not all days will be great, but all days you live to see another day are worth living.  No one knows what tomorrow will hold, and we don't know that our or Jasiu's future is certain, but we choose to live and do everything to strive to be better than yesterday and that should suffice.

So anyone starting to read our story starting just now, read all the current good stuff happening now and then the hospital days, because those hospital days will pass with God's grace you will survive it and be thankful each day forward, as we are.  

Here we are living our life with HLHS in the last 6 months  :)

Last weekend getaway trip to Wis Dells

Being the best big brother

Being the goofy brother

Loving some monster trucks

Loosing your first tooth

Skiing and not giving up

just plain silly

best presents under the tree

more silliness

Being the cutest ring bearer

exploring a firetruck engine

and some good pontoon rides

SIX

We have a SIX year old !

Two weeks ago, Jasiu turned six, we kissed our five year old good night and whispered in his ear that tomorrow he will wake up a six year old.

With all the excitement he asked, will I be bigger than Sebastian (younger but taller cousin)?  I replied, you will be OLDER not necessarily bigger (taller) and he gave me a satisfied smile and fell asleep with the idea of being Older than his cousin. The worries/ excitements of a true 6 year old!

How blessed are we that he can still go to sleep worrying about the stuff that matters most to just kids and not about his heart.

His birthday, was a no Polish School Saturday, so that was a plus, we celebrated with just the 5 of us and a small M&M cake. Then his godmother came over with a great gift relevant to prior week's early celebrations Monster Jam Truck, our Favorite Pirates Curse.  (A very good gift Ciocia)

Every birthday I think about all that went on the day Jasiu was born and the immediate days that followed. The fear, uncertainty and love we had for this brand new baby hooked up to those machines, medicines and that required 24/7 medical assistance. I think about it and think I wish I can go back to myself 6 years ago and tell her that it gets better and that  it is all worth it. I remember being scared that he may not make it out of the OR, the first time, that he may have complications, that he may not make it out the second, third time... always fearing the worst. Was it all for nothing... maybe, but all those fears are helping me realize that we must cherish each day....

Now days, it's hard to think that this wild, stubborn, yet loving and cuddly kid went through all that in his first two years of life.   Jasiu has such willpower to do what he wants and the most squiggly annoying little voice that sometimes honestly he just drives us nuts, I find myself raising my voice  OK yelling and then falling asleep feeling bad about it, like any other parent. However, most of the days I think how much love of life and all things boy. He has so much energy I don't know where it comes from but we are glad he has it.

So for now we deal with  enjoy this rambunctious Jasiu of ours and hope and pray he has this much energy and love of life forever.

Happy Birthday Jasiu !

Here are some pictures from our celebrations.

Post Dental Work

We have a brave  boy !  John was ready to leave for the hospital at 8am, kind of excited about it, even  though we didn't have to leave until 10 am.  Good thing he's not that much of an eater because he did not ask for food or drink at home or at the hospital until 1pm and that's when he got the versed medicine to help him with separation anxiety and he was off to the procedure.

It brought on many memories sitting in that waiting room that I did not want to relive and it didn't make it any easier knowing it was only for dental work this time.

Waiting in Dad's lap

John was in good spirits and by the time they had to take him he was so drugged up that he did not cry or wasn't even phased that the anesthesiologist took him away from us, he was practically sleeping.  When we walked into pre op there was a game and two matchbox cars waiting for him, courtesy of Child life department, so that made it less scary . We played one round of pop up game, then some Legos and then with Play dough. We were scheduled for 12:15 but of course they were running behind (hospital time, we like to joke) and they took him around 1:15.  Before that we discussed the procedures with our dentist, Dr. Lubas and the anesthesiologist, who is very familiar with heart kids, as she works with for pediatric cardiac kids only.

All drugged up Jasiu

We were escorted to the waiting room and had some lunch in the waiting room. Then I went to pump and came back and still no word from the OR. Then around 3:30 they came and called us that they were finished. We talked with Dr. Lubas. John had 2 palpitations (sp?) and all the fillings and 3 crowns put in. ( I need to take a pic of those but they are silver).  All went well as scheduled. Thank God!

Next only one parent was allowed in the phase 1 recovery - immediately out of the OR. As soon as I entered the double doors I heard Jasiu, not crying rather coughing. He does this if his throat hurts he coughs. He was quite polite about it and covered his mouth every time he coughed. I asked if he can get water and they allowed it, it only slightly helped. Then the anesthesiologist asked if he likes popsicles?  That calmed him down immediately and she even brought two ! So that helped his spirits and throat, I call that a win, even though it was such a bright orange (read artificial color and most likely flavor).   After about 15 minutes we were escorted to another phase 2 recovery room and dad joined us.

The phase 2 recovery he got some juice, vitals were taken a few times and then finally he was ready for discharge, it lasted about 45 minutes. Finally the IV came out and we were discharged around 5pm.  All in all not terrible timing.

In the last 3 hours Jasiu had some chicken soup, yogurt and bread dipped in milk so his appetite is slowly returning.  Only restriction we have is no swimming and bike riding due to anesthesia needing to wear off completely over the next 24  hours.

Then we are on to regularly scheduled activities.   Kindergarten in 2 weeks !!!

Now we have movie night and then off to bed. Thank you for all the prayers.

OR sooner than we thought-- Dental Issues

As we have been reminded time and time again, nothing is "easy" with HLHS kiddos, dental work included !

Two weeks ago we had a pre Kindergarten dentist appointment and we learned that between his last appointment a year ago (my bad), John has acquired 7 cavities !    SEVEN ! 

I don't know whose fault it is at this point, could be that he loves lollypops and bites them and we have only slightly limited their existence in John's diet, could be that his teeth have been exposed to sugary syrups from all the meds he has had in the past and his teeth enamel is weak, could be that he inherited my terrible teeth genes, or could be that we allowed him more often than not to brush his own teeth lately, mostly since his last appointment.  Anyways, it is what it is and we have to fix it. 

For a normal kid, say Emily, whose one cavity we already fixed last week, you get some numbing gel, get a local anesthetic shot and the dentist fixes it right in the dentists office, no big deal. But for a cardiac kid, one who is on aspirin, first the kid takes a dose of antibiotic for the cleaning and dental exam, just in case prior to the appointment.  If a cavity exists and has to be fixed, we would have to stop the aspirin for 7 days prior to getting the tooth filling. Since John has 7, this means they would have to fix it two at a time, so that would be off of aspirin for a minimum of
 weeks at a time, for someone who depends on the aspirin medically, that is beyond the comfort of our cardiologist, so we have to do it all at once -  IN THE OPERATING ROOM  , UNDER GENERAL ANASTHESIA ...

Did I say in the Operating Room with a breathing tube down the throat administered by the pediatric cardiac anesthesiologists, same ones that did his open heart surgeries? Yes the same ones.

When I heard this I almost threw up right there in the dentist office. I was/ am not ready to send him to the OR again, not even for dental work. 

I was assured that it's very routine, we should go home the same day and all will be well, but this is still a big deal to us .

We go in for this today . Please send a prayer for John and for a successful procedure with no complications from either the anesthesia, from the dental work  and for his spirit. He not phased by this at all since he doesn't remember the last time he was in the OR. He knows hes going to the hospital and will have his teeth fixed but probably doesn't realize what that all entails. That is a good and bad thing, I want him to not beg for the candy and soda, but I don't want him to be terrified of the hospital - it's a fine line. 

I will keep the blog updated.

Semiannual Update

So this is a looooong overdue update.  Haven't updated since February and we have been busy, so we will have one long one. 

1. Today Jasiu had his semiannual appointment with cardiology. His LAST semiannual as he just graduated to ANNUAL appointments !!! Mama is more scared than Jasiu.  He did great at the hospital and confused it with "mom's hospital" (I'll get to that soon). He walked in like a boss, went straight for the toys in the waiting room to wait his turn. Then he walked in and got his height, weight and vitals. He was perfect for EKG and echo as well, at this point John is a pro and such a good boy. He is almost a full pediatric bed in the room, so that's huge for us.  The echo and EKG were read and Dr. H said all looks great, no changes in leak, still mild and function is great and there is no narrowing in any of the areas that possibly could narrow. Then he said we can see you in a year, unless John says something is different or we notice anything off out of the ordinary ! WOW one whole year to see cardiology. This is huge for us. Labs went decently well and the blood draw caused just a few shed tears but nothing a new LEGO set couldn't fix.

with Dr. H.

EKG Time

Getting an Echo like a boss

2. This week marks 6 weeks that Jasiu is a big brother, for those readers that are not on Facebook, I don't think I even shared the news on the blog.  Baby Dominik was born on May 25 and Jasiu became officially a big brother, a job he doesn't take lightly. Emily being a big sister AGAIN, is also very excited, "even if the baby is a boy he's still cute " (her words).  Baby is heart healthy above all else, we had two fetal echos and I insisted on an echo after birth and they are all good and normal.  Baby is doing well and we are all adjusting to being a family of 5. The true test will be when the kids go back to school and I go back to work, but all will  be well I'm sure.

Maternity Session

Maternity Session

Jasiu enjoying being a big brother in awe...

All three kiddos

3. Jasiu is registered and getting an eye exam and another dental exam all in preparation for KINDERGARTEN !!! Another milestone in this HLHSers journey. I can't explain how excited we are that he gets to cross this milestone off his list come mid August. He knows almost all of his letters and numbers to 10 and can verbally count until 20, he is a very smart boy and just as his sister has a remark for almost anything you tell him. He negotiates well with Emily to get what he wants.

Overall, as always, no update is a good update, means that nothing out of the ordinary medically is happening, and since we are on a good streak, we like to keep it that way. We are living as normally as possible with a kid with half a heart, which for us only means that we work hard to remember morning meds, and the fact that we sometimes have to force out our blueberry out of the pool to warm him up. He tends to get cold and lips and nail beds are quite blue, even pulse ox was at 75 for about 10 minutes once, but once warmed up, it got right back up to his usual 95 range.  Other than that we have a typical mischievous 5 year old who has lots of energy, gets in lots of trouble and thinks up of the coolest Lego creations all in that little head and heart of his.

4 th of July Weekend

This is a tired Half hearted boy at 2pm after a long weekend - nap time deserved (rarely happens these days)

We keep praying that things stay this way and keep thanking God for this miracle that we are able to enjoy another day.

~ FIVE ~

"Am I a whole hand now?" came yelling into my room this morning at 6:30. 

This little boy is super excited to turn 5. 

I am amazed at the energy and enthusiasm this kid has. He is strong willed {read: stubborn}, funny, and just amazing.  I need to start keeping better track of the blog but life gets in the way and we are perfectly fine with that.

We beat the horrible statistic we were given and I feared from the day of his diagnosis 75% of HLHS kids make it to their 5th birthday! It seems like a lot, but not what you want to hear when your dream up of your perfect little baby.  But here we are and feeling blessed !

We will celebrate this Sunday with a LEGO party and celebrate each and every day as we have been trying to since the day he was born. 

Semi Annual Update !

Last week Last month (I started writing and never posted) we had our semiannual cardiology visit with Dr. H.  With great joy, we have nothing new medically to report, which is a great way to start our summer.   Dr. H has a new nurse who is really nice and I'm sure we will grow to like her as much as we did Angie. { Angie - we miss you !!!}   She was able to get me some of John's hospital records so that I can take with us on our trip to Poland just in case.  She seems easy to work with and that makes me feel a lot better.

Heart function is good with the usual mild leaking, nothing major. Weight 42.5lbs height 43 inches (I think). John was a great patient this time as well and had a good time chatting up all the nurses, doctors and techs.  Dennis, our favorite echo tech was telling the new person whom he was training, how far Jasiu has come from his screaming crying sleeping echos and it really made me greatful that we have such great care here at Advocate.

We are all clear to go to Poland this summer cardiac wise, emotionally though I'm pretty nervous. As most readers know, Jasiu has the "best" luck of getting into trouble, so hopefully we have an uneventful trip.  We will be almost 2 hours away from any hospital equipped to handle HLHSers as far as I'm aware.  I did however meet our new neighbors and her sister lives in Poland not to far from where we are visiting and has a 5 year old HLHS'er post Fontan as well. Makes me feel slightly better.

John is also registered for preschool in our district for 5 days a week and I was working on starting a 504 plan for him just in case, and seems to be some hurdles we need to cross, mainly that we have to wait till beginning of school year to get anything started and I would like him to be in the AM class since he tends to tire much quicker. As a result I think the AM class would suit him better and he would have best experience coming fresh from a well rested night instead of tired from morning play, especially since he still likes to take a nap in the afternoon from time to time.   Hopefully everything works out for us when we get the process started.  Emily and Jasiu unfortunately will not be in the same school this year since she is moving to middle school 2nd -5th grade.  Jasiu will be in the school Emily just graduated from !

Finally, I want to thank everyone who joined our Team Jasiu for our annual Walking/Running for Hope on June 7th .  It was a nice start with a very rainy wet ending.  I haven't seen Jasiu's lips so purple from the cold in A LONG time as I did on that day. Despite the cold weather we had a great turn out and everyone had fun (minus the rain part).  We raised a lot of money for the hospital and the Ronald McDonald house which all stays local to help this great hospital.  I also want to thank my good friend from high school Joanna, who helped me design our very first TEAM JASIU t-shirts.  She did an awesome job and the print came out exactly how we planned on the t-shirts.  THANK YOU !

That is all the updates I have for now, let's have a great summer and hopefully uneventful health/cardiac wise.

OUR BRAVE BOY !

BRINGING IN DONATIONS FROM TEAM JASIU SHIRT SALES

Clever as they come

Our big boy had his preschool screening today and boy did we have a good laugh. These are too good to forget so I'm journaling it here.

Jasiu did great ! He was a tad shy at first but overcame that pretty quickly and by the end he was quite sad that he couldn't stay longer and actually attend now and that he had to go home.

They did the physical development first - stand on one foot, then the other, hop , hop on one foot and then the other. When he sat down he announced to the tester and his translator he was really tired and laughed. I could tell he wasn't tired, but he was amused that they believed him. 

He knew all his body parts and all the items in the pictures except for tweezers. Tweezers.... he doesn't ever see me use them and our kids don't have access to them so I'm not surprised he doesn't know.

He knew all his colors and numbers and had trouble with the letters and sounds, which is ok by me, he only attended school since January of this year so he has plenty of time to learn it.

He had no problem tracing and copying different shapes.

When all the academic stuff was out of the way the situational questions came and boy did the testers laugh at this clever little boy of ours....

Example one:    There is a picture of a kitchen and a fork on the floor. 
         Tester:  What is this?
                Jasiu: Fork
         Tester: Where does it belong?
                Jasiu : On the counter or in the sink
         Tester: Why?
                Jasiu: Because this cat that is sitting here can possibly eat it and then he could choke !

I nearly fell of my chair laughing, and believe it or not that is one of the acceptable answers for that scene.

Example two: Tester shows him  picture of an apple
         Tester: What is this and what do you do with it?
                Jasiu : It's an apple, mom cuts it up and we eat it


Example three: 
         Tester: What do you do when you walk into a dark room?
             Jasiu:  Put on our pajamas and go to sleep!

Example four:
         Tester: Shows him a picture of a coat and asks What is this and what do you do with it?
                 Jasiu:  You wash it, fold it in a shelf and then you can put it on.


So all in all the screening went well, I hope he gets in this free preschool program (it is a program based on need to "catch up" in various areas). If he does great, if not Jasiu will attend the park district preschool like his sister and that will be fine too. 

Finally at the end of the testing I revealed to the tester and the translator about HLHS and they didn't believe until Jasiu whipped out his zipper and showed them his "extra belly buttons".  

Take that HLHS !!!

Make-a- Wish Trip

 OUR MAKE -A- WISH TRIP WAS AMAZING !

So it has been over month since we got back and I just got the time to sit down and write about it.(Ok, so I'm siting down a second time to continue writing.) As soon as we came back I had laundry, unpacking, new school for Jasiu and year end close at work (read: long hours at the office + weekends for almost 3 weeks).  I did go through our pictures during the late night hours and compiled our memory photo book, but it took all the energy I had left after that trip.  So let's start at the beginning...

Shortly after his 3rd surgery (April 2012) I applied to Make-a-Wish for Jasiu to see if his wish could be granted.  For those that are not familiar with Make a Wish, "Make-A-Wish^® grants the wish of a child diagnosed with a life-threatening medical condition in the United States and its territories, on average, every 38 minutes. We believe that a wish experience can be a game-changer. This one belief guides us. It inspires us to grant wishes that change the lives of the kids we serve." (from: www.wish.org)

Jasiu's paperwork was sent to his medical team reviewed and he qualified for a wish, it is a common unfortunate misconception that a child has to be dying in order to have a wish granted.  We were overwhelmingly grateful that he got this opportunity and yet it is also a reminder that Jasiu does have a life-threating medical condition despite how well he looks on the outside.

We met with our wish granters last winter and Jasiu decided he wanted to meet Mickey, Daffy, Goofy  and the clubhouse friends. We were granted to go to Disney World in Florida.  We decided he should be just a bit older before we go so that he can enjoy and remember the trip a bit more. A whole year we waited, the kids even forgot about it for a bit and then we surprised this December that we will be off to meet Mickey.

We had a fun start to our trip as the limo guy is the one who woke us up at 5:15am.  We set our alarm clock for 4:00 am so that we could get ready and then slowly wake up the kids and not agitate them too much as it s quite early for our guys, but my husband set his alarm clock for 4 am on next Saturday not Monday. So the limo driver who was sitting on our driveway since 5am called my cell phone at 5:15 !!!! Well that was an abrupt wake up call, we double teamed, Joe got the bags in the limo, (good thing they were all packed the night before) and I got the kids not so subtly woken up, dressed and out the door. When we were driving away from our home it was 5:25 !!! We did it all in 10 minutes and we did not forget anything. AMAZING ! 

In addition to a limo to and from the airport, with Make-a-Wish trip is you get amazing service at the airport, you skip all the lines, go straight to TSA and get a helper to help you with bags and then we were off.   Our flight was not bad, kids were excited and we got a Give Kids the World Greater at the airport. GKTW is an experience in and of itself. It is a village for "wish" kids. You spend the week in your fully eqipped villa, meals, all you can eat pizza and ice cream plus all other meals. There is a heated pool, splash pad, playground, arcade, and much more. Every week the village celebrates Halloween, Christmas, Birthday party for the Mayor, Pirate and Princess night, etc... ohh and the mayor is a 6 foot Rabbit, Mayor Clayton.  The Mayor can come and tuck the kids in one night, that was a blast.  You can spend the whole week on the property and not get bored at all... but that's not the end of it. We got 3 day passes to all 4 Disney parks, 2 day passes to Universal Studios and Islands of Adventure and 1 day pass to Sea World, it's really amazing because it's not just regular passes, they are "Wish" passes which grant you access to all the rides and character greetings without waiting in any of the lines. AMAZING once in a lifetime opportunity. (let me tell you for Anna and Elsa, the line was about 3 hours long, Ariel, 1.5hrs., Merida 2 hrs. Whinnie the pooh 1hr, most rides were 55 min +. You could easily spend one full day just waiting in lines and we didn't - All the staff members recognize the "Wish Geanie" and just help in any accomodating way they can.

So I carefully planned out each day, located the kid rides we were going to experience and shared it with the family, but as plans like to do, they changed... we were exhausted and had to take a day to recuperate and visit urgent care for an unexpected ear infection for Jasiu.  One day and one prescription for antibiotic later and we were back on track. 

The highlight of our trip for Jasiu was meeting his current heroes, the Teenage Mutant Ninja Turtles.  We had to travel to the Nickelodeon Hotel and had a private meeting with all four TMNT.  It was a bit weird that Jasiu was a very shy and not super ecstatic, but he came around and he turned out to have a blast. I think he may have been overwhelmed by the whole thing.  We all had a good time and enjoyed our private meeting with the turtles. Turns out that the ear infection was already brewing in Jasiu because I checked his temperature that evening and it was elevated. I checked in the morning and it was a full blown fever and an ear ache. So instead of Animal Kingdom, we went to urgent care the next day.

Day 1 - Getting to FL an spending time at GKTW at their Halloween Party

Day 2 - Hollywood Studios including many rides, character greets , Holiday Lights Show and Frozen Sing along experience

Day 3 - Magic Kingdom (New Years Eve)  including Fireworks show, Cinderella's Castle light show (2 different ones) Meeting Elsa and Anna and many more characters, rides and great time. Mommy did 32,000 steps that day !. We were so tired we didn't even make the GKTW NYE party.

Day 4 - Sea World and Meeting the TMNT, great fun day but we started noticing Jasiu being more cranky and irritable. Christmas party at the village

Day 5 - AM - Urgent Care, antibiotics.  PM - Downtown Disney Emily had a princess transformation booked and Jasiu spent lots of time in the LEGO store.  Considering the circumstances a decent day plus Mayor Clayton came to tuck the kids into bed. .

Day 6 - Animal Kingdom - Amazing experience and Jasiu was sooo much better, In the evening it was Princess and Pirate party at GKTW

Day 7 - Day to go home we made it to Universal Studios and in the morning before our flight home to see some more of our favorite character.


This trip was such a blessing to us and it helped us celebrate the hardships that Jasiu went through to get to this point. It was a once in a lifetime trip that I hope the kids never forget, even if it is just by looking through the pictures.


Here are a few pictures and a link to the memory book that I created that captures the amazing moments we had.   I will never forget the true happiness on the faces of my kiddos when they experienced it all.

https://www.scribd.com/doc/252067302/Disney-Photo-Book-2

After the week long adventure, we came back tired and sad that we had to leave but so happy that we go to experience Disney World and Florida in such a special way.