Re-baselining “Normal”

When your infant starts to look unwell what do you do? Most parents walk into a pediatrician’s office with their baby, get seen and handed a prescription, then go home to work through it. That’s normal, right? If you’re most people with a healthy kid, sure.

If you’re a heart warrior parent, normal is a trip to the ER and an admission. It doesn’t have to be a big issue that sends you there, either. This week it was as simple as a twice daily 0.5 mg dose of a diaretic that sent Liam into a respiratory spiral (med fact: diaretics cause you to pee- that fluid is pulled from everywhere in the body and for heart babies, diaretics are prescribed to pull fluid from around the lungs. When the diaretic is discontinued prematurely, fluid around the lungs builds up and can create enough pressure to make it hard for them to breathe). 1 mg of 1 drug per day is enough to send a heart baby into the PCICU. That is our new normal.

It doesn’t have to be a drug miscalculation- it can be as little as a UTI or a common cold. Where most parents go to the pediatrician, we will go straight to the hospital. It’s a jarring change from the experience we had with our first child and it snuck up on us. To realize the inside of an ER will be as familiar as a favorite restaurant is disturbing at first, but ultimately reassuring when you’re going 70 mph in a 35 en route. 

The walk back into PCICU yesterday initially felt like a walk of shame- as if somehow we’d failed as Liam’s parents, but the unsurprised looks from nurses and doctors quickly washed away all those feelings. They expected to see us again before the second surgery. 

The simple and inescapable truth is they may very well see us again, only next time, we’ll feel less like failures and more like attentive and caring parents who saw the signs and made the call to the cardiologist without a second thought.