Various medical issues—some my own, most of them other people’s—have kept me away from here longer than I’d anticipated. Everything is okay, but recent events reminded me that health situations can change so quickly, that you can’t plan for some things, and that you have to be willing to adapt, switch gears, and sometimes, do what doctors tell you even if it wasn’t on your radar.
Living in the moment is not easy for me. I am a type A, detail-oriented, list-making person. My natural proclivity for being a control freak is certainly exacerbated by the fact that life with chronic illness very often throws all semblance of control out the window, but the natural proclivity is there nonetheless. For better and for worse, it’s who I am.
But right now, the best thing I can do is abandon my need for a tenacious grip on the future, to have a plan for every outcome and count on the details to soothe me.
When people find out you are pregnant, they naturally start asking a lot of well-intentioned questions: When are you due? Do you know what you’re having? How are you feeling? These are the easy ones to answer.
But then we get to harder ones: Will you have a c-section? Will you bottle feed or nurse? Are you going to have a second?
The short answer: Um, I don’t know.
Would you believe that in all of my many high-risk appointments and ultrasounds we have not discussed the actual birth? Partially it’s because I am only 23 weeks and we have time to discuss the rest, but it’s also because my entire team very much takes things day by day with me. Any change in labs, pulmonary status, infection status, etc and they want to know immediately. Right now, their focus is on keeping me as healthy as possible, because a healthier me means a healthier baby girl.
I realized a long time ago that having a medically intensive, high-risk pregnancy meant surrendering a lot of control to my expert doctors. Of course I have preferences—I’d prefer not to have major abdominal surgery—but I also know at the end of the day, we will decide what is best for the baby. I am not someone who can parse out a detailed birth plan, because my health will dictate what we do.
(I covered some of the risks of a PCD pregnancy in Life Disrupted but here’s a brief recap, for context: “normal” PCD infections last longer and are more serious in pregnant women, especially as lung volume changes, meaning I can reasonably expect to be in the hospital more often and for longer periods. The biggest concern is pre-term delivery, either since infections can trigger early labor or because we reach a tipping point where the risks of lower oxygenation outweigh the risks of premature birth. Whether I am induced earlier, need a c-section, or go close to full term and have a more traditional delivery depends on a huge number of variables, and again, I will do whatever my doctors say gives my baby the healthiest start possible. These are the major concerns; we’re juggling a lot of other competing issues too.)
I should also emphasize that though we have had some rocky patches so far, the baby is fabulous—healthy and thriving.
We haven’t discussed formula versus breastfeeding yet. If I can, I’d like to try; it depends on whether my medications after delivery are safe. I will defer to my team and what they say is prudent for the baby. Again, I have my own personal preferences but realize I may have to adjust my expectations for the best outcome.
Of all the well-intentioned and common questions pregnant women get, for several reasons the one about having more children is the one that drives me crazy. First and foremost, this pregnancy took so long to achieve and we continue to fight incredibly hard to keep her safe. I don’t want to fast-forward through this precious period of time, to think about hypothetical children. I want to focus on the child who is growing here in the present, the one we waited four years for. I do not take her safe entry into the world for granted.
But also? It’s a really personal, loaded question. I love having siblings and would love to be able to give our daughter siblings but it is complicated and for lots of reasons that I don’t need to detail here, it may not be in cards. Who knows what will happen, but I do know that I don’t need to be reminded of what I might not be able to give her, especially right now.
We’ve had some long, rough months and a lot of the journey remains ahead of us. Right now, in this moment, we are in a good, stable place. I want to enjoy this moment, and live fully in this moment. I am so grateful we are here, and that she is okay, and that is all that matters. As much as it goes against my instincts, I am relieved (happy) to just take things day by day. I can’t plan for everything. I can just do my best, listen to my wonderful doctors, nurses, and nurse practitioners, and hope that all our combined hard work pays off.
I realize this is a pregnancy-centered post, but I think the same applies to living with illness in general: health status can change in an instant, no matter what we do. We can’t spend every second worrying about what might happen or what else we could do to prevent things or we miss out on the present.