The Pratt's Guide to Heart Warrior Parenting

It’s no fun when your baby has Rhinovirus (i.e: a cold). The most you can do is gear up for a few long, congested nights and dream of the day when a head cold doesn’t mean a week of sleep deprivation for the entire household. It’s not fun, but that’s as bad as it gets. For single-ventricle babies, however, Rhinovirus means a hospital stay. There’s a lot of medical reasons why, but the gist of it is that respiratory trouble equals oxygenation trouble and oxygenation trouble affects the entire body. So, Liam needs help getting enough oxygen and, until the cold passes, he’ll be under close observation and on some amount of “flow,” though it may very well be longer. More on that in a minute. While it is easy to feel sorry for ourselves- after all, we are 3 for 3 on celebrating holidays in a hospital room- he doesn’t have RSV (very bad for CHD kids) and we do have the best pediatric cardiologists and nurses watching out for our son 24/7 (God, I really hope we’re not here for a whole week)...

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 ev...

When I returned to work 3 months after giving birth to my daughter, Eliza, I was heartbroken. I handed my sweet baby to a person who was, at that time, a near stranger and then drove to my job in tears. So it has gone (sans the tears) for the last two years and some change.  I must repeat this process yet again with Liam in mere hours. The only difference this time is instead of sending Liam off to daycare, he’ll be staying home with my husband- which is nothing short of a saving grace. Interstage is a time of near isolation to avoid any and all contagion with only small spurts of calculated risk taking the form of having people over for pockets of time. For Liam, going to daycare during this time could kill him- a banal cold might as well be Ebola, so Logan has started an FMLA leave which should be enough to get us through the second surgery and recovery. Logan’s ability to stay home does  help relieve the feelings of guilt- after all, Liam will have some amazing Dad time E...