Wednesday, August 29, 2018

2018 Summer Update

Cardio appointment -

First things first - John had a great annual cardiology appointment. It was quick. Echo, EKG were all good and unchanged, which is great.  We did not have to have labs or EKG because last year's were great and now Dr. H. wants to do them every other year. I prepared Jasiu for a blood draw and of course promised a Target run after the appointment and there was no labs !!! "But we still get to go to Target Right?!?" inquired John. (this one is easily bribable) Quick and done and to Target we went and I could enjoy the summer with a little bit of ease, as usual.


Our Summer -

School was out and the kids couldn't be happier.

Our summer seemed short as always, but there was no shortage of fun.  This year we put up a nice pool for the kids. It was a temporary type of pool, but with a pump and a ladder to get into, so it was much better than the blow up pools they had in the past few years.  John really loves the water, he would go in even on the coldest of summer nights and swim, jump and splash all day long.  The kids enjoyed it so much we are thinking of putting in a large heated pool next year, but that is TBD... for now.

We start off the summer as usual with the Running for Hope 5K ! We had a great turn out and I loved seeing our friends and family support our great hospital that has and is continuing to support and help us on every step of this journey.  We love Team Jasiu ! Thank you for being with us !

We went camping, to Indiana lake house and our big trip was to Tennessee.  I was wondering how John would do with the higher altitude and he did just fine. His endurance was great and was as active as ever.

John also got brand new glasses this summer. I have noticed John was sitting closer to the TV on the floor instead of the couch and we decided to bring him along for an eye doctor visit that we go with Emily  every year (who has been wearing glasses since Kindergarten).  Guess what ? John is now a proud owner and has been inducted into the Glasses wearing club.  Let me tell you, it's not easy to transition to glasses, we lose them about 100 times a day... but he's getting used to it.

This summer was also our very fist ER visit ! It was actually nothing heart related, rather boy related, fast and pretty clumsy boy related.  John split his ear open on our stairs when he was running around and there was blood everywhere...  Turns out that they don't like to do stiches on the ear if they aren't absolutely necessary because the soft tissue would be more deformed from the stiches so they decided to glue it. It was determined that he did not need a CT or head scan since the bruise was not super large and he did not lose consciousness. We stopped our aspirin for a few days while the ear healed. He was up and running the next day ... Boys will be boys.  It wasn't fun and I as always thought of all the bad things that could have happened but all is good.  I'm actually surprised it took us 7 years for this type of injury. 

Let me tell you this looked MUCH WORSE than it appears on a picture !

Just chillaxing in the ER...

 2nd Grade  -

Now that summer is over we are off to 2nd Grade !!!  This mama can't believe it that we have a 2nd grader - a Middle Schooler - in our district. This is the first time the John and Emily are in the same school, though only for one year. Emily started 5th grade and is super excited for her last year in middle school  before she is off to Jr. High.   We wish every one a safe Back to School.

Wednesday, May 30, 2018

2017/2018 School Year Recap

The 2017/2018 school year is coming to a close and we have put 1st grade in the books.

Another milestone crossed - off to middle school he goes !
In our school district pre-K, K and 1st grade is  a separate school from the 2-5th graders, which means Jasiu is now in the same school as Emily for one year while she goes through 5th and then moves on to Jr. High, which is in another school. This means that next school year both kids will be in the SAME school. This is huge for this mama.
First grade went great for John, we now know he is excelling in math and it comes quite easily for him, even his timed addition and subtraction facts (with some extra practice at home) has been awesome. He has not struggled with the clock, fractions or anything particularly, though he could benefit from slowing down and organizing his work a bit more. His penmanship could use some work, but we are all working on that.... aren't we.  Reading and writing are his weaker areas and he does not enjoy reading as much as his sister. As creative as he is, he does not want to put pencil to paper to write and express his creativity in writing. Bummer.  However, this too we will work on over the summer.  He does extremely well on his standardized tests and for a kid who was on bypass three times as a baby, that is awesome. Sometimes mama has to remind herself to be patient as we do homework .... (let's just leave it at that... teaching is not my calling... )  Favorite subject, John will say is gym followed by recess and math is a close third.  John enjoyed his classmates and generally likes/ tolerates school. 
This winter we went skiing a few times and this year Jasiu really liked it, didn't seem to be too tired and went on the bigger bunny hill instead of the nearly flat one. He said he is ready for the large lift but I am not ready for him to go on that yet, maybe next winter. Emily went on the large hill green trail this year for the first time and she is 9.  Here is our little skier.
The last post said we are looking forward to LEGOLAND in October 2017... well it took us until March 2018 to finally plan it and go, so we took a week off of school and went to Florida early this spring. We took our homework with us and enjoyed some sunny FL, while Chicago had temps in the 30's.  Jasiu was in LEGO heaven. He loved every aspect of it, he loved the room, the LEGO play area, the cafeteria, theme park and the LEGO figures walking around (though we didn't see as many as we thought we would). After LEGOLAND we went to Treasure Island FL to the beach for some relaxation after LEGO mayhem.  It was a great vacation for all of us.  Next stop Gatlinburg, TN in July, stay tuned.

Next week we have our annual cardiology appointment. I will post a quick update as soon as I have time.
At home and school John has been feeling great cardio wise. He is stronger than ever,  now that the weather has gotten really nice, the kids have been on their bicycles and I have been running behind them with Dominik, now 2, in the jogging stroller. I'm proud to say John can  bike ride 3 miles  with no problem, except for the large hill on our way home, but even I can't bike ride that hill all the way up.  We did the 3miles at least 4 times in two weeks. Emily can almost get all the way up that hill by the way.  Speaking of bike riding, this spring is the year that John finally learned to ride 2 wheels. Since dad was suffering from a knee problem, mom taught John how to ride the big two wheel bicycle. It only took him about 3 days to get the full swing of things. Now this summer mama can get in shape while running after the older two on their bikes.   We have also been really impressed with John's upper body strength. apparently he has been practicing monkey bars at school and showed me how he can do them every time we go to the park. I  am attaching a video to this post for all of the readers to see. This too is  proud mama moment.
 Well, we bid 1st grade farewell and off on summer vacation we go.

Tuesday, July 25, 2017

Cardio Update 2017

Cardio visit this year was June 30th and this mama is a month behind on the update. 

We are happy to report that our appointment went smoothly. We started out with labs this time, which never happened but this also means that we had the blood drawn first.  We (Jasiu) was  quite a bit concerned and did not like it at all, however it allowed us to get lab results right after our appointment.  Well getting blood drawn is never fun  but Jasiu did awesome for a 6 year old. He shed a few tears, but cheered up as soon as we left the lab.  He had fun telling everyone he is going to LEGOLAND soon (October hopefully) but to him it can't come soon enough.  After a quick blood draw and a lollypop, we were off to echo lab.

There we briefly saw our Fontan buddy Eli, but because of patient privacy, etc, we could not talk only in the waiting room but then we were whisked away and didn't get to talk much.  Eli is doing awesome as well.

We had our height and weight measured weight 23.2kg which is 51.04 pounds   and 113 cm / 44.4 inches tall ( Still not tall enough for the pool waterslide :(  ) Oxygen saturation was great near 100% and EKG was good too.   Echo was wonderful, we had our old buddy do our echo, he has worked with us since Jasiu was a baby, he remembers the struggles and lengths we went through to get a good echo, and this time as usual, Jasiu laid down, turned on his tv show and only complained once because he was uncomfortable, usually when they look though the jugular angle, from top of neck down at the heart, requires an arched back and head tilted back (kind of like looking at the TV upside down.)

Once our echo was done and Dr. H. read it, he came in to see us.  When Jasiu saw him, he gave him the biggest bearhug I have seen him give someone who he barely sees anymore.  It literally brought tears to my eyes.  We talked about endurance, school and next steps, and we were explained that right now we are "cruising".  I was told we don't see much of any issues until teen years, which of course we hope to never see, but for now to keep doing what we are doing and enjoy life.  We will do just that.  We sported a holter monitor for 24 hours (Friday all day and through Saturday, until we got to Michigan for the 4th of July weekend).  Jasiu, though he DID NOT LIKE having it on, did not complain and went on his merry way.  Results came in just last week, all normal.

I did explain to Dr. H. that we had a slight mix-up in medicine late May, where Jasiu was getting 3x the Enalapril dose he was prescribed for 5 days... This mix-up was caused because I did not pack the 7 day medicine dispenser and Joe thought he was supposed to get full tablet of  Enalapril and aspirin. When this happened we noticed a huge increase in Jasiu's night time cough. Well turns out that he outgrew that dose anyways so it wasn't that  bad for him as we thought.   I'm not sure if related, but we were switched to Lipril.  So far so good with the new med, and no cutting required.   It has a longer half in the body so stays effective longer.

After our appointment we went as usual to Target, to reward Jasiu for all of his cooperation, of course Pokémon was the reward, because God only knows we don't need any more Lego's.

We had a great 4th of July weekend in Michigan, berry picking, beaching, shopping and eating and finally blueberry picking and finished off the holiday at a great BBQ  .

We are off to enjoy what is the rest of our summer vacation and off to 1st grade we are.

Here is a few pics from May (Dominik's first birthday session). All the kids are growing up so quickly.

Saturday, June 17, 2017

Goodbye Kindergarten

So this just happened (2 weeks ago)!!!

Just like that this boy is out of Kindergarten. He graduated wI think so much excitement to go to 1st grade that it melted our hearts. 

His class had a graduation ceremony where all the kids walked the stage and sang songs for the parents. It is so joyous to know that we crossed another milestone in his life with no major interventions or setbacks.  We all went to see him graduate and even Grandma and my sister attended.  Jasiu was so proud and happy and so are we. 

We have truly been blessed because we are so fully aware of the alternative. 

We have a jam packed summer with outings here and there to go out and enjoy summer vacation. Jasiu is excited to swim hike and do so many things and we pray gets to do it all.  We have summer passes to the local pool, dad is with the kids all day and mom is working summer hours so this should call for a nice summer. 

Junemployment 30th is our annual appointment so wish us luck.

Saturday, March 11, 2017

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

Friday, March 10, 2017


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.

Wednesday, August 3, 2016

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.

Saturday, July 9, 2016

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.