There... and back again

Watching your baby go through open heart surgery is difficult on a variety of levels- the stress and struggle is constant and the emotional casualties can be lasting. Studies indicate parents of CHD children are at higher risk of PTSD among other issues like anxiety and depression [Mental Health]. Other studies indicate parents’ health related quality of life (HRQoL) diminishes immediately following a child’s open heart surgery [Predictors of Parental QoL] and while it can improve within 6 months of a surgery, that positive change is largely determined by how well the child is faring. So it should come as no surprise, as we gear up for Liam’s Bi-Directional Glenn procedure [What is the Glenn?], we are filled with anxiety. 

People like to ask us how risky the Glenn procedure is and while it’s a less complex, less risky surgery than, say, the Norwood (1st surgery), it’s still an open-heart surgery. There are no guarantees and no golden tickets, but then again, when is there ever?

On the other side of the Glenn is a well-deserved reprieve. Following the second surgery, we won’t have to track every feed. We won’t need to weigh him everyday or check his oxygen saturations morning and night. We can begin to introduce Liam to the outside world with less fear. We can go on a vacation. Life will become more normal for a time. Of course, our normal will be baselined against the first months of his life spent in either a hospital room or a near-quarantined environment at home, but to us it will represent a degree of freedom we’ve lacked for a while.

This week, we find ourselves once again looking ahead and seeing storm clouds on the horizon. Next Wednesday, Liam is scheduled for his pre-Glenn Catherization, the results of which will largely determine when he will be scheduled for his second surgery (no more than a handful of weeks, likely less). I am torn between feelings of relief and pangs of fear, an emotional concoction that will surely become all too familiar in the days and weeks to come. We can only pray the time will pass quickly and our son will be with us on the other side, one step closer to a more stable condition.