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.