Early in our marriage and small group-leading days, we were introduced to the book “Love & Respect”. Its concepts and language have become ingrained in our marriage, and you’ll often hear one of us refer to “stepping on my airhose”, “the crazy cycle”, or “when the issue isn’t the issue”. Who knew when we did that Bible Study 10 years ago that those same phrases would be so applicable to raising a preemie?!?
I recently posted an updated growth chart on Facebook, one that showed a huge jump and a steep slope upwards, after nearly 3 months of stagnation. FINALLY Struthers’ weight has surpassed his month-age! The 30-calorie/ounce formula is certainly helping, and having us bolus through the feeding tube has been a game-changer, launching Struthers over that elusive 20-pound mark! Many of you commented, offering praises, admiration and celebration. And I’m celebrating what I can too! But I know deep down, the issue isn’t the issue. His weight isn’t really the issue. The curve isn’t really the issue. If he’s gonna be small, he’s small, and that’s OK with us! The issue is that the weight is the outward indicator of what we can only hope is happening inside that round little body. The issue is that his lungs are and always will be damaged. The issue is that they are thickened and inelastic. The issue is that while there will some improvement with growth, he will always have respiratory issues and the smallest cold will take his compromised lung capacity down even more. And it feels like a ticking timebomb to do what we can to support that growth while his lungs can still generate new lung tissue and alveolar sacs. In essence, we are still in a race to the starting line, and so many things can throw us off course along the way. So the name of the game is to get and keep his lungs at their very best. To use an optometry term, we need to get him to his “best correctable”. We are doing that with a cocktail of inhaled steroids, constant oral prednisone, minimized exposure to irritants and illness (aka avoiding “the crazy cycle”), caloric intake and of course, oxygen (“the airhose”).
Last week’s pulmonology appointment was sobering in so many ways. With another failed Room Air Challenge (a marker for leaving the NICU), cancelled Mother’s Day plans for a weekend in Breckenridge (10,000-ft elevation), and warnings to limit the travel this summer, I knew that the growth we were celebrating wasn’t really the issue. It has taken me 18 months to truly digest that the issues aren’t always the issues. It has taken time, research and experience to understand the complicated course Struthers is on. By all appearances and most statistics, we should be in the clear now, off oxygen and able to let our guard down. But, alas, the issue isn’t really the issue.
As always, thanks for your continued prayers. More detailed explanations of Struthers’ clinical condition can be found on the Resources page.