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.