Monday, February 27, 2012

Birthday Celebration

Jasiu is the happiest one year old I know. This child always has the biggest wide mouthed smile on and  now with 5 pearly whites showing. It is the cutest thing to see  and as with most things, pictures don’t do it justice.  The party was on his actual birthday so it was really nice to be celebrating such a big milestone with the closest people to us.

We started the day with a special delivery from Sweet Dreams Cakes chosen by Icing Smiles with the greatest cake I could have ever imagined. It was three tiers topped with a crown for our special birthday prince. It was a beautiful beautiful cake and very well deserved for our little warrior prince. As you can see from the picture it was as tall as he was when sitting down and easily weighed twice as Jasiu.  It matched the theme perfectly and above all tasted amazing. It was truly delicious and we got so many compliments on it for both the design and taste.  It was also accompanied by cupcakes for our littlest guests and a smash cake just for our little prince. Jasiu loved the cake too, the first thing he wanted to do was stick his hands into the main cake, however because it was with fondant, he didn’t do much damage to it before the party, Emily on the other hand picked off a few decorations before the party even started.

Should I..or shouldn't I...


Our little birthday prince went down for an afternoon nap and woke up perfectly as the first guests started to arrive. Since people started to gather little by little he had an ok time adjusting to the pretty big crowd that eventually turned to the full party of 40 adults and about 18 kids. The clowns arrived just as the dinner started and that worked out perfectly as well since I requested that the clowns tell kids to eat the dinner first before we begin playing, and you know what? They listened to the clowns and not the adults and ate their dinner, very quickly might I add.  In the meantime the clowns set up all their games and activities. The kids were soooo excited. Jasiu didn’t mind the clown at first,  but when 18 kids started jumping and running around and the music blasting in the basement he lost his little marbles and was just too overwhelmed and screamed so we took him upstairs. Most of the kids enjoyed the clowns and playing games and seemed really happy. Maybe next year he will enjoy it more. The best part about the clowns is that it kept the kids from tearing up the rest of the house occupied for 2 hours. They also did balloons and face painting and the kids enjoyed that too.

That's it.. I've had enough

Mommy to the rescue

Play time with Clowns.. we had a lot of mummies in the room :)

After clown time it was cake time and guess who showed up! Mickey Mouse brought Jasiu his cake! (It was one of the clowns that changed while the other one kept the kids occupied.)  I had no idea this would be happening and it was a nice surprise. Some of the older kids doubted whether it was a real Mickey or not but we convinced them it was.  We blew out the candle once, than Emily had to blow out the candle again, and then the other kids had to get their chance… The kids in our family love birthday candles enough so that a quarter of the candle was burned out. Also worth mentioning, Jasiu did not enjoy Mickey as much as the other kids, I was a little sad, but he’s one and probably instead of Mickey saw a giant headed monster trying to take him from mommy’s arms, not cool, and he screamed again and had to be removed from the situation. We did manage to sneak Jasiu into a few Mickey pictures but you can totally see the look on his face that he's not liking it.

Our one decent picture with Mickey

All smiles back now that Mickey is out of here...

After cake time was bed time for our Jasiu. He was EXHAUSTED. He took his bottle and passed out. Even in a house full of loud people and screaming kids he fell asleep and stayed that way for the most part. One of the grandma’s jobs was to watch the baby monitor because there would be no way to hear him if he woke up in the noise downstairs. He only woke up once and once I rocked him to sleep he was out for good. Around 9pm people started trickling out and the last guest left  fell asleep on the couch at 2 am. Yep, a good ‘ol Polish B-day party.

We didn’t open presents until the next day because 1. Jasiu is still little and didn’t push for it like an older child would and 2. I was also EXHAUSTED.  Emily had a lot of fun opening the presents and Jasiu helped. As we do things now with two kids, I keep thinking how boring it must have been for Emily since I was the one that had to open her 1st presents and now these two little munchkins have  sooo much fun ripping open wrapping paper and throwing around tissue paper and waiting anxiously until the toys are out of the box. It seemed so much more fun now than it did two and a half years ago. The house is soo much louder now and I love it.

So Excited

My Sweet Babies

So we want to thank all the people that were present to celebrate with us and we thank those who unfortunately had to miss the party due to illness. It means so much to us that everyone understands that we don’t take too many chances with Jasiu and for those who has slight sniffles respectfully kept their hands to themselves. Everyone loves our Jasiu so much and only wants the best for him and we love that. THANK YOU ALL.  Finally thank you for all the presents. Now that the old toys are in the basement, the area that housed all of the current toys was vacant and once we opened all the  boxes it is now FULL. So much for thinking I will get my living room back.. nope, it’s still a giant play room and now we have two. Jasiu loves all of his toys but he LOVES the boxes. Emily on the other hand, loves all the stuff inside of the boxes and already claimed that Jasiu must share with her all his toys and we actually have to keep her off of some of the ride on toys for weight limitations. It’s pretty funny to  see her trying out a toy that assists a baby in walking and explaining to her that it’s for babies.

Speaking of walking… I think our Jasiu is well on his way to be doing just that. He is now cruising around the furniture at full speed and walking with holding on to only one hand very well. He is a little dare devil and lets go thinking he probably can and ends up on his bum after two shaky steps which doesn’t deter him from trying over and over again.  He is also attempting to stand up from the sitting position unassisted by furniture and it’s the cutest thing to see him try to figure out what comes up first but or hands or knees. He this thing where he’s kneeling on one knee and one knee up and just half stands there.. too cute, but I’m a little bias.  Anyways, I think within the next month we will have a walker on our hands, God be willing.  He is right on target of where his sister was at that age, she took her first independent steps on her birthday and took off from there, so that’s exactly what Jasiu is doing right now.

He is also finally eating much better, he still needs his distractions to eat, but once he gets distracted by one thing he won’t lose interest as quickly and can down a 4.5 oz  bottle in about 15 minutes. That’s a huge improvement from the hour to 1.5 it took him just a few weeks ago. His solids intake and tolerance is also much better and only pukes when he chooses to do so or if he’s sick.  But with a change in diet come other obstacles. Our current one is constipation and I’ll leave it at that. It is something I will be bringing up to our pediatrician next week at our 12 month well  baby check. (let’s hope it’s a well baby check up by that time and  he’s not fermenting something he could have picked up at the party) We don’t have another cardiology appointment until May so that’s two months away and we will have an echo at that time.  Until then we will enjoy the time with our ONE year old !!!

Friday, February 24, 2012

Hear Yeee, Hear Yeee

Our 'Lil Prince is turning ONE !

We made it!

Jasiu, YOU DID IT !

 He got through this tough year !

Can you tell I'm excited... That is such a huge relief and one of the happiest moments in our lives, and what a year it has been. February 25, 2011 was the scarriest day of our lives, we didn't know how it all will turn out, how hard yet rewarding this year would be. It’s been a rocky beginning, a roller coaster of emotions, ups and downs, tears of pain and tears of happiness and above all it was a time of continued hope for a tomorrow.  Jasiu came such a long way during this year it amazes me every single day and moment that I think about him. In the CHD community the first year hurdle is just another statistic that you try to overcome. It’s a major step in the right direction but it is not the end and it’s not like we can just breathe a sigh of relief and consider it done and let our guard down. The battle continues and we continue to enjoy life.

Here is a quick synopsis or our 1st year…
·        2 open heart surgeries
·        2 heart catheterizations
·        27 days in the hospital
·        Numerous heart echos
·        More X-rays that I can even think of
·        4 synagis rounds (total of 8 shots so far) (One more round in March)
·        5 months on the NG tube
·       13 Cardiology / Clinic Visits
·        9 Pediatrician Visits
·        365 days of Life we are grateful for

Despite all of this, we have spent every major holiday at home with him and though we spent the first 5 months pretty much locked up at home and the clinic it was one of the best years of our lives (the other two best “first” years were first year married and Emily’s first year). Once we got over the interstage we began to live our “normal” life.

People everywhere comment how happy he is and how he is always smiling, how much energy he has, especially at church. Honestly, this child is so active that we have a hard time during a one hour mass to keep him occupied and happy because he gets bored so quickly and wants to be active all day long. People who don’t know about his HLHS would never be able to tell from looking at him. I love and hate that. I love it because we can live a somewhat normal life. I hate it because when I act paranoid or too controlling or overprotective, people look at me like I’m from Mars, but I’m getting used to that feeling and it’s not about how I am feeling it’s about Jasiu and what I need to do to protect him.

Some fun facts about Jasiu:

·        He beat out his sister at rolling over at around 5.5 months (one month post surgery #2)
·        He already has 5 teeth and more trying to break through
·        He has NO Fear – lets go of the couch or his toys and thinks he can walk already (looks like he drank a liter of vodka when he walks assisted by our hands)
·        He can make it up our one flight of stairs in under a minute (if we let him)
·        He can make 2 or three steps alone to fall into your arms
·        He loves diving into his ball pits he received for Christmas
·        He is so smart, funny, and stubborn all at once and with one look you can tell he is all three sometimes.
·        He loves to “sing” and babbles a lot

·        He has barely a quarter of an inch of hair and wakes up with the funniest bedhead ever
·        He absolutely loves bath time

We will celebrate this birthday with so much joy and happiness for our family and for Jasiu. As with every day we thank God for this gift and celebrate as if it was our last, whether it’s Jasiu’s mine or anyone’s because the harsh reality that this ONE year taught me is that we are not promised tomorrow. God may call each and every one of us to him anytime, which everyone knows in the back of their minds but doesn’t really think about it. During this long year, I have seen so many of the 40,000 babies that didn’t make it to this wonderful celebration and were called to be in heaven way too early than we would like. So much pain in the CHD community that it breaks my heart for their parents, that instead of birthdays they have to celebrate “angelverseries” and that it could be us any day.  I don’t want to end on this somber note because we were given this wonderful year with Jasiu and we are grateful and we continue to fight. So we need to continue to thank God and celebrate to the fullest.

The Big First Birthday Party celebration will be on Jasiu’s actual birthday, we will be surrounded by close family and friends and mark this milestone in the calendars. It won’t be a huge bash since it’s February in Chicago and a nice backyard party with inflatable jumpers and the like is just not happening in 35 degree weather, but we will have clown for the kids, good food, a beautiful cake provided by Icing Smiles and the playground, ie the basement though only about 70% finished it’s complete enough so that the kids can safely play down there with plenty of room to spare.

Happy 1st Birthday Jasiu !!! 

Mommy Daddy and Emilka love you so much.

Tuesday, February 7, 2012

CHD Awareness Week

Today starts CHD Awareness week - February 7 - 14 !!! 

But to me - every day is CHD awareness

In honor of Jasiu and all of his heart buddies and angels, this video is to spread awareness and share our story of HOPE.  We have been truly blessed with Jasiu's progress and keep praying that God will continue to bless his little heart each day.

I'm not that creative and honestly don't have that much time to be more involved on my blog with stories of hope, I really wish I could. However, there are many wonderful heart mom' who are featuring stories of CHD warriors each day this week so feel free to check out their wonderful blogs for more inspirational stories.

Owen's Story

Aly Jean's Story featuring a CHD warriors

Logan and his mom's "Interview with a heart mom" stories

Thursday, February 2, 2012

Heart Month

The month of February is National Heart Month. The week of February 7 - 14 is Congenital Heart Defect (CHD) Awareness Week.  How fitting it is that our Heart Warrior was also born in February.

Prior to being thrown into this new world, honestly, I had no idea about any of this. I lived my life knowing there are these horrible things out there but never in a million years knew the statistics or that it could EVER happen to me or my baby... however if you read these statistics.. it could really happen to anyone. The more we know the more we can help spread awareness and help fund valuable research to provide the newest advancements for detection and treatment.  Our Jasiu is helping me spread awareness. Here are some scary facts... 

*** Congenital Heart Defects are the #1 birth defect worldwide

*** Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide

*** About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)

*** Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects

*** Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday

*** Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday

*** The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year

*** Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research

*** The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD

*** Though research is ongoing, at least 35 defects have now been identified

*** Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood

***It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications

                                                                              Information taken from It's My Heart Website.

Because Jasiu has been doing so well with only minor bumps on the road, I have taken it upon myself to spread awareness and most of all HOPE.  The life of a CHD mom is not easy. No one I have met on this road ever said it would be but it's one of the most rewarding ones. (Not to say that just being a parent to a healthy baby isn't rewarding, but this adds  whole new level.) These children deserve the same life as all other healthy children do.

As a result of my goal to spread awareness, I have signed up to volunteer with the Go Red For Women  with the American Heart Association with the long term goal to raise awareness for the need to do more research for CHD's and not only adult acquired diseases. I needed my foot in the door and I think this will be it. As you would read on that website Heart disease is also the #1 killer for Women, so it's important for all of us. I only wish that CHD's got as much awareness and press as adult diseases and cancer do. 

I'm also looking to see if a CHD Heart Awareness Walk is already organized in Chicago area to get more involved in fundraising for research. How cool would it be if I got some help from the local heart mamas to organize one.