Tuesday, April 22, 2014

One Year Ago Today....

... We handed our boy over for his THIRD open heart surgery, the Fontan.  I am ashamed to say that  that I forgot about the significance of this anniversary until a dear friend of mine, in the midst of her own personal loss, posted on my FB page "Happy Fontaniversary".  In my defense, we are super busy right now, I'm changing jobs so I'm transitioning at work, and worrying about starting my new one. I'm getting ready for a conference I'm going to this week NPC- QIC, National Pediatric Cardiology Quality Improvement Collaborative. https://jcchdqi.org/ . Vacation planning (since we need to take a vacation in between my jobs because it's hard to take a vacation as a new hire and Easter was just last week, etc.  Basically, life is hectic - a good hectic where we can worry about normal things and not looming surgeries or cardiology visits.  But I don't know how it slipped my mind.

Last year we felt like we were starting all over, though we knew that this day was supposed to be the beginning of a "new beginning" for Jasiu and our family, that a Fontan is the last planned surgery, it was still hard to go through it. As any parent we were scared for our boy and for our family and all the what if's were just hunting our dreams every night. We didn't know what the recovery was going to be like this time around, what effects it would have on Jasiu physically and mentally, how he would react to his new circulation and to the trauma that he went through. It didn't help that we had a rough recovery and it seemed like months... well with the liquid restrictions and slow medicine weaning and diet changes... it was a good 6 months before we were back to "normal" but the time in retrospect seems like it was so long ago because we were blessed with the next 6 months of an even better version of Jasiu.

Once we weaned the meds, lifted diet and fluid restriction and his incision healed outside of scheduled appointments he was no different from when we went in. His attitude may have gotten spunkier and he did become more spoiled probably because of the experience, but we are lucky that this two year old memory is a positive in this situation. He was not hunted by the trauma and was just as happy of a camper once he healed. He gained a new found energy, I guess near 100% oxygenation will do that to your body and energy level. He stopped throwing up upon exertion and is tough to keep up with him.  He flourished into the rowdy 3 year old that he is now. We have been so BLESSED beyond my comprehension.

I often struggle with this last part, we are blessed (especially around our heart related anniversaries)  that Jasiu is doing so well, that he has no delays, no major setbacks and others are not so fortunate. Why can't all kids and families be blessed and be able to enjoy life with their babies. I'm so happy that I have both of my kids and can squeeze their tiny bodies for a hug whenever I want and there are parents who had to lay their little ones to rest. It is just so unfair and I can't comprehend this. I guess it's not for us to understand why things happen the way they do but we are only human and often question why things happen the way they do. I thank God for Jasiu every day, but why can't it seem more fair.  I mourn for the parents that no longer have their baby, weather it was port Fontan, post Glenn or at any other point in their HLHS journey, it is so tough to see a child pass away. I silently pray for those families and continue to pray for our family that we may be blessed for as long as God sees fit.