The Pratt's Guide to Heart Warrior Parenting

It’s been three weeks since Liam was discharged post Super Glenn, two weeks later than initially projected. Six weeks before that, Logan and I were sitting helplessly in PCICU while cardiologists and surgeons scratched their heads unsure of why the lauded Glenn Procedure was failing our 4 month old son. I have joked, in my classically biting way, that I will need years of therapy for those 8 days alone, but the joke’s on my insurance provider because it’s true. Of all the things Liam has had to go through, this was the most harrowing yet.  This truth is particularly galling given how this surgery was billed: easy procedure, fast recovery. A quality of life game-changer. None of those things happened for us. Maybe the last one, but not in the traditional sense. Liam is pinker and more vibrant for sure, but the Super Glenn continues on the shunt dependency that made the Norwood tricky. The Super Glenn puts Liam in a grey area of pseudo-Interstage, or purgatory, given the season....

What a difference 24 hours makes. This time yesterday, Liam was being wheeled back into the OR for a last-ditch effort to bring him back to the land of the oxygenated living. Today, his saturations are 20+ points higher and his little body is pink and on the mend.  There are different, non-medical, terms for the Glenn + Shunt: The Shenn , The Glunt , and my personal favorite, The Super Glenn . In talking with Duke’s Chief of Pediatric Cardiology yesterday, it seems as though there is a small subset of HLHS kids who just need more than what The Glenn has to offer. As of now, there is no research that would provide clarity on the existence of indicators which would point surgeons to an immediate “Super-Glenn” procedure. Partly because it’s only now that more and more kids are making it through interstage and partly because the need for more pulmonary pathways is being considered case by case, hospital by hospital. Maybe sometime soon a study will be created so that kids like Liam wi...

As I write this post, our boy is 8 days post-Glenn and in the OR getting a BT shunt that will hopefully provide his lungs a new pathway for oxygen-poor blood to soak up and send out oxygen-rich blood to the rest of his body.  If you had asked me before the 27th of September where we would be 8 days out from the Bi-Directional Glenn, I would have said, “hopefully looking towards a discharge and home.” That was before we learned that Liam was a risky candidate for the Glenn and, today, I wonder if such a luminous path remains possible.  The surgeons hope that they can keep the Glenn physiology in this surgery. It is possible they will have to undo all their work from last Thursday- it all hinges on whether this shunt will be what Liam’s lungs need.  We have been hoping each day for better outcomes and each day we are gut-punched with disappointing news. We hope all he needs is a shunt- that it would be Liam’s golden ticket, that it would be so easy and he could come back...

The Bi-Direction Glenn procedure is supposed to be a less complex open-heart surgery ( What is the Bi-Directional Glenn? ), but the simple fact remains that Liam will be undergoing a massive surgery in less than 48 hours. It feels weird saying it, but our time in "interstage" is finally drawing to a close. This is both a time of celebration and a time of fear. As one waxes the other wanes- a push and pull that leaves us feeling relief in one minute (we’ve made it) and trembling in fear in the next. In less than two days, the time of pulse-ox measurements and hawk-like staring for even the slightest changes in coloration or respiratory rates will be over. But there is a catch: to get there, Liam has to be subjected to the scapel again- his scar now a helpful "cut here" for the surgeon. People have told me over the last few days, "it's going to be fine," or "everything will be ok." This annoys me, if I'm being honest. And I am being hones...

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...