HLHS- Now What?

Someone recently asked me whether it was better that we found out our son has a Congenital Heart Defect (CHD) before he was born or if we wished we didn't know until after. It's actually a really good question and I don't think every parent would answer the same.

For us, we prefer that we know prior to our son's birth. Don't get me wrong, knowing is hard. Knowing means a loss- we've lost our innocent anticipation of our second child and we've lost peace of mind. What we've gained by trading the normal pregnancy process is weeks and weeks of planning and preparation. And there is SO much to prepare for. A couple of things which dawned on us within the first 36 hours following our son's HLHS diagnosis was 1) our house is too small and 2) we should move before our son is born. Everything we've done in the last 6 weeks have been driven by these realizations. A lot of what we'll do in the next 16 weeks will be driven by these same epiphanies.

But that was just scratching the surface. Financial planning for maternity leave in the US is already a massive undertaking for working parents, but factoring in a lengthy medical stay, hospital parking fees, and food planning into an already complex budget to maintain childcare and keep a roof over our heads feels overwhelming at times. We have a plan to develop a budget this week to ensure we save enough to make it through this fiscally lean period. That plan takes care of maternity leave, but we still need to plan for the 2nd surgery that should take place when our son is between 4 & 6 months old. Will both of us take time off? Will that time be PTO or unpaid? For how long? These are the questions we are asking ourselves every day.

Like dark storm clouds right overhead, finances are looming large, but it's the relational aspects of this diagnosis that sneak up on you. The emotional stressors that directly affect marriage/family relationships have already begun and they will only get more intense as we go along. Will our marriage survive this? What about our 2 yr old daughter? How do we talk to her about her little brother right now? How do we talk to her about her little brother when she cannot visit in the hospital? Will she get lost in the crisis mode? These are the worries that weigh heavy on us. In the quiet of the evening, in the slow hours of a work day, these are questions we daily face.

So, the question of, "now what?" is ongoing. Everyday it evolves: some questions become more nuanced and while some may get answered quickly, there are plenty to take their place. That can feel wearisome, but the way we say, "now what?" in our hearts matters. That question will be there one way or another for what currently is an undisclosed amount of time, but is the tone exasperated or determined? Is it whiny or pragmatic? To be honest, it depends on the day, but we are striving for determined and pragmatic. The only way to keep that going is to focus on the tasks at hand for that day. We get whiny and exasperated when we think about next week or 4 months from now because it's just too much. The weight of it all is crushing. When we think about the day- what can we do today? - that is when we can see a small victory and we are encouraged to take on another hurdle and see the good in that effort. Then we ask ourselves again, "now what?"