Saturday, March 31, 2012

Lucky to be where we are...

Today I read an article in a Polish newspaper of a little girl with HLHS and I realized how lucky we are to be in the United States during Jasiu's battle with HLHS. For one, her mom did not get a prenatal diagnosis (though this still happens in the US it's much more prevalent in Poland), second her mom had to literally BEG the doctors to go the 3 stage surgery way and was even told bluntly 'Why, she won't make it anyways', and third she is now 18 months old (post 2 surgeries) and though she's doing well they still are seeking funds/approval for a pulseoximeter machine. I can't imagine how that woman survived the interstage without a pulse ox. Though I had to learn how to "read" John on my own I can't imagine going through that without a pulse ox. Just before Jasiu's first birthday I got a letter from our insurance company that the pulse ox we were renting is now ours since the insurance paid enough rental fees to own it, so we are proud owners of a Masimo hospital grade pulse ox. It is bulky but it is also accurate and it gives me a piece of mind. In the first year I have used it religiously, we still sporadically use it but that's not the point.

We are also lucky to be at this stage in the battle because frankly I'm not sure how much more my mom, mother in law, husband and I could handle with the feeding difficulties Jasiu had. Jasiu is now an avid eater ! He LOVES food and still likes his milk. He's fascinated when he watches food cooking/ water boiling on the stove (safely from his high chair mostly) and also by the microwave. He prefers home cooking like made soup and lately since we had amazing weather e already tired food prepared off of the grill and loves that too, he even tried some finely finely mashed up steak  and chicken. He still eats his oatmeal and baby foods (vegetables and fruits) I prepare in the steamer/blender. It really puts tears in my eyes just thinking about it. He is also doing wonderfully with feeding himself.. he enjoys ladyfingers wafers, chewable chips, yogurt melts, etc... We also found a sippy cup that he Loves. We literally have almost every sippy cup/straw cup (spill proof) on the market. it's a sippy cup with a soft flip straw and I love it because it's spill proof. We have had some interesting cups and he either doesn't  have enough strength to suck it through the spill proof valve, the straw is too soft or too hard or it spills because it;s too soft.. ohh it was a battle itself to search for one he likes. It was also by accident that we found it for him, the particular cup he loves was bought for Emily (it's Kai Lin one pink and one darker blue/purple) and Jasiu loves the PINK one :) ohh well at least he is drinking on his own.

We are also lucky to be in an area where we have so much support and not just from the on line community but from the hospital and others who live relatively close to where we live. Since we are where we are on this journey I feel like I can finally help others and give support and hope for the future. I had the pleasure of meeting little Kubus and his family last weekend. He has HLHS like Jasiu and is also having feeding difficulties. I would like our support group and payer warriors to say an extra prayer for Kubus that he starts eating by mouth soon because his mommy and daddy can really use the break. He didn't have such an easy recovery from the Glenn and an infection brought all of his eating progress back to zero, but I have full faith and pray for him and progress. Go Kubus Go !!!
We are also enjoying life which is as normal as I never thought I would have even been able to imagine. We have a beautiful spring (in March in Chicago) and are enjoying ever last minute of it. Here are a few pics of the kids enjoying the weather and the outdoors.

Tuesday, March 13, 2012

Bottle Breakthrough...

I just had to update on this remarkable breakthrough... yesterday Jasiu longed for his bottle and almost took it all (5 ounces) before bath time. We usually wait until he is bathed and in his jammies and then eat and sleep... yesterday (even though he ate almost an hour prior to this happening) he grabbed the bottle from my hands while we were walking up the stairs to get ready and went at it.  I was soooo surprised, I just let him have it and held him while he drank with almost tears in my eyes. Then after the bath he finished the rest, also distraction free.

For a kid who had to have CONSTANT distraction and a tremendous effort on our part in order to get him to eat, this is HUGE and I am so proud of him. It took over a year for him to WANT his bottles, good things are always worth waiting for and he just did it when he was ready I guess. It may also have something to do with phasing out the formula and phasing in whole milk. We are now at 1 oz formula to 3 oz whole milk and he may just prefer milk over formula and I don't blame him. 

For table foods, he has some favorites that he will always go for without a struggle and some of the stuff he needs to eat needs some distractions but he will eat them. The iPhone apps and cartoons are still our go to distraction and I will take what works.

We also had our 12 month appointment a 2 weeks ago and he is doing great health wise. The pediatrician is happy with his progress. He took his vaccines like  champ and we were given the green light for whole milk.

We also had our last Synagis shot last week which means that flu and cold season is nearing the end. This means that hopefully I can relax a little more about the caughs and sniffles going around, though I hardly doubt it, I will want to protect him forever as much as I can. The weather is getting much nicer in Chicago as well so I envision us going on afternoon/ evening walks soon. It will be nice to get out and show Jasiu the outside world.

Next Cardio appointment in May, please pray that his heart function is still good, that the leaky valve is still mild and that we don't have any surprises. Until then.. we take it one day at a time! Thanks for your continued support and payers.  

Thursday, March 1, 2012


One year ago on March 1, we handed our son over for his very first open heart surgery.

It was the hardest and most difficult day of our lives and we knew that this was going to be the first of at least three dreaded times we would have to do this. We walked with him as he was rolled over to the operating room, kissed him goodbye and left him with the surgeons to have him be put to sleep, on a ventilator, body cooled, heart stopped, put on bypass and have his heart (the size of a walnut) and cardiovascular system reconfigured so that he could have a chance at life.  We waited and waited for what seemed like an eternity for updates praying, deeply praying as we saw people enter and exit the waiting room for the next 8 hours. By the time we left the waiting room, we were the last ones there. Both Joe and I felt like we were the only people in the world and just so damn lonely and scared just waiting for an update.  For full details on this date click here.

One Year ago - Fighting Hard

For the past couple of weeks as we were preparing for Jasiu’s first birthday and party, I was an emotional wreck because we were celebrating such a milestone and this “anniversary”.  I was completely overjoyed that we made it this far, extremely sad that Jasiu has had to go through so much. Faithful and hopeful that things are turning around for us and that our food and eating issues are behind us. I was also mentally exhausted just thinking how hard it was for both Jasiu and us as a family. The toll it took on Emily and so on and so forth.  Thankfully our biggest struggle post surgery was feeding. Jasiu was on the NG for 5 months, just refusing to take the bottle. I kept thinking to myself  how sad and terrible it is that we have to struggle so much to get him to eat. At times I was even angry, how can he not be hungry or interested in food… “normal” kids eat, why couldn’t he just eat. Than I would feel ashamed of myself, how could I think such things, we should be happy he’s alive, but when you are in the middle of a battlefield it’s hard to think positive, all you see is the struggles and pain that you and this little baby are enduring.  The one reassuring thing is knowing that he will not remember any of this. I think it’s enough that one of us has to and I will take it any day.

Thankfully the tough times passed for us for now and now we are enjoying a somewhat normal life. Jasiu is eating much better, gaining weight well (though I continue to stress about it) and is just the most happiest baby ever.

He has come such a long way from that 4 day old infant hooked up to so many tubes and wires, chest opened and eyes swollen shut. That image will forever be engrained in my mind and now as he is getting older and getting into trouble, I remind myself every day that this is our walking miracle, defying a lot of odds stacked up against him.  He is currently kicking some HLHS butt and we can only pray that he continues to do so.  

Part of the purpose of this blog is to show hope to parents who may be in the same exact shoes I was last year because when I was there, that’s where I drew my strength. I saw so many kids with their “then” and “now” photos on their blogs or Facebook pages and I prayed so hard that that would be us some day because I couldn’t bear to think about the alternative.  So if you are an expectant HLHS parent please know that there is a lot of HOPE for these children. Medicine is moving forward and these children are stronger than any of us combined. They fight each day for their life first in the hospital and then in real life, even if it doesn’t even seem like it.  No one can tell just by looking at him that he is sick, that he is fighting this battle, this is the curse and blessing in one.  

Jasiu is our warrior and March 1
was the day he won his first battle.