How Raising a Micro Preemie is Like Running a Marathon (And I Hate Running)

Ever since Jax’s birth, I feel like I’ve been running a marathon. There are reasons why I hate running – I have to wear three sports bras and I usually only make it a block. My arms and legs are flailing, my heart is racing, my mind is jumbled and confused, and I can’t stop to rest.

But three months ago, it was finally starting to let up a little. The marathon was coming to an end – I could see the finish line. I let my guard down a little. Would we actually get to live a normal life? One where Jax didn’t have to struggle to breathe? Where he could play with his cousins all winter long without fear of being hospitalized because of respiratory infections? Where I could stop being a medical case worker and finally start to focus on me again?

I made plans to go back to work part-time. Jax started daycare. It was the beginning of our new, normal life. One that didn’t include 4 doctors appointments a week with 7 different specialists.

WHAM! And then we got the brain tumor diagnosis.  It slapped us on the face. Hard.

And now, instead of reaching for that finish-line, we’re running head first into another back-to-back marathon.

It’s exhausting.

And if the last two years have been a marathon, then this week will be like a sprint within the marathon (runner people, is there a word for that?).

On Monday, we have an appointment with pulmonology. The outcome of this appointment will dictate how we live for the next 7 months during cold and flu season. Will Jax be put back on daily steroids and Singluair? How will our Respiratory Action Plan change? Will we hear the devastating words “you will have a third year of isolation restrictions?” I don’t know if I will be able to make it through another winter of isolation.

On Tuesday, Jax sees his speech therapist. On Wednesday, he has the pre-op appointment. On Thursday he will go to daycare. This will be good for me because I will use the day to pack and prepare myself mentally for the brain MRI and hypospadias surgery on Friday morning.

I let myself “go there” last night. I’ve been doing an ok job of squashing “what if” out of my vocabulary – but there it was – loud and clear. What if the tumor has grown? Jax will be under anesthesia for 4 hours – the risks of that alone are scary. He will have major surgery to repair his hypospadias, he will spend the night in the hospital, and have a stent for 9 days following surgery.

I’d better buy a new pair of running shoes…