Our HLHS Journey: I Don’t know what to call it…

Today marks the one year anniversary of the day we found out about Jasiu and his special heart. I feel like anniversary is not the right word because to me it has a connotation of a celebration and it’s not something I would think to celebrate. Remember, yes; celebrate never. It’s a day that will forever be in my memory as the day our world changed and our eyes really opened up to the harsh reality that so many people face. I remember everything up to the moment we found out about Jasiu’s heart, it was a happy day that ended terribly. We were excited to find out whether Emily will have a baby brother or sister; she was also so excited, even made room in the bassinet she was laying in for her the new baby while we were getting ready to drop her off to grandpa’s, gosh we even stopped at a garage sale on the way to the ultrasound. We really didn’t even know how lucky we were up until this point.

Within 20 minutes we were thrown into a whole new category of parents, we learned we will have to become “heart” parents and one of many many many families affected by CHD’s. The two weeks that followed October 16, 2010 are all a blur. We had two separate cardiologists do an echocardiogram and the same diagnosis. We had an amniocentesis test done, numerous additional ultrasounds, genetic counseling, surgeon consultation, etc... During those two weeks like so many newly diagnosed parents, we were given very grim chances for our son. Most of the information we received was not very good and negative. They kept repeating that termination is an option and to really think about it. It was scary to think that I would bring this baby to term and he would have to suffer for the rest of his life. Based on what we were told the future would be very difficult for us and our baby and the quality of his life is uncertain.

However, after the initial shock wore off I learned from the internet of course, that the heart community is large and the network and support is out there all you have to do is reach out; turns out that Facebook is a great resource to reach out to others in the same situation and connect. The next 18 weeks of my pregnancy were very scary and full of questions of the unknown. There were so many heart warriors struggling and so many angels earning their wings that I found it hard to see the positives. However somehow I stumbled upon a group of women who set out to create hope with their little warriors as examples that there is SO much hope out there and the quality of life for these kids with HLHS doesn’t’ have to be a grim one. I received a package from Sisters by Heart. A package from a complete stranger, I thought it was the weirdest thing, that someone who didn’t know me, barely just “met” me and learned of my situation could relate so much. It helped ! I began to finally read positive stories and see that there is hope and lots of it. I began to feel a little better and try to stay positive, nonetheless we were already changed and we didn’t share our son’s diagnosis with extended family members and friends until just before Jasiu was born. We sort of put on an act, when asked if we were going to have a boy or girl, we happily with pseudo smiles on our faces answered “a boy” but in my heart I was so scared for him, hopeful, but scared. It was hard to be happy when we knew what was waiting for him on the outside, hospitals, doctors, surgeries, constant medication. It all seemed so horrible for an innocent baby to have to go through this. It turns out that some people who really pay attention already knew something was not right. I had a long conversation about this a few weeks ago with an uncle and aunt of mine who revealed to me that they noticed we were not “ourselves” at a large Christmas party just a few weeks before Jasiu was born. The closer we were to Jasiu’s arrival the more nervous we were. We continued to pray that maybe, just maybe the doctors were wrong and he would be born heart healthy. We hoped and prayed!

Now, fast forward one year and we have Jasiu, a bouncy and happy as a clam 7 and a half month old. What a year it has been. He has been through two surgeries, spent only a month in the hospital, total, and has pretty much met all of the milestones a healthy 7 month old has. Amazing ! With the grim news we were given that horrid day one year ago I wouldn’t believe you if you told me it would be like this though many people assured me that things will be “fine”. It’s tough to accept, because they don’t know, no one knows it will be fine. I’m so grateful and thank God and pray each day that it will be “Fine” but no one really knows.

Yes it was a tough year and a tougher 7 months for Jasiu, but he is here, growing, smiling, playing with his big sister and giving us a reason to get up every day. He is proving all those doctors wrong, the quality of life for HLHS can be a good one. I can only hope that he will get a chance to grow up, thrive and be able to tell his own story one day. Hope is so important in these cases because I don’t even want to think of the other options we were given. Our only option now is to fight right along with Jasiu and help him along the way. I will always remember this day and reflect upon but for now we have our own normal life, a new normal, but I love it. I would want to say I wouldn’t want to change a thing since we are so happy, but there is only one obvious thing I would… But, under these circumstances we were given I really wouldn’t change a thing. I have two beautiful babies at home and that is what counts !

Here are some promised pictures from the Hope Children’s annual picnic. After looking at thiese pictures how can I feel anything else but lucky.