It’s been quite the journey with our sweet Stella. I’m finally sitting down to share more about something that has been part of our lives for years. If you’ve ever met Stella, you’ll know exactly what I’m talking about: her breathing. Come with me as I share how we finally got a diagnosis of scarred vocal cords and what this means for her.

A 25-Week Premature Miracle

Stella was born prematurely at 25 weeks due to PPROM at 14 weeks. She weighed just 1.5 lbs. While her intubation was a success on the first attempt, her first 12 hours were so critical. I still remember the staff were having a really hard time with her CO output. She was medicated to the max. They even had to wean her off of morphine because they had given me that as a muscle relaxant in the days prior to her delivery, in the hopes that it would stop labour (without luck, obviously).

She was such a fighter, even though she looked so incredibly fragile with her skin still being translucent, her arteries and veins visible. Her first feed was 1 ml over the course of 4 hours! She was at the same time also getting TPN (total pediatric nutrition) through her belly button. Looking back, it was truly a special time.

Not a Bad Habit, a Clinical Reason

Stella has always been a noisy breather, and I, as her mom, attributed it to her having learned how to breathe after such a premature birth. But man, was I ever wrong. And I feel really badly for that now.

When she was two, we did visit ENT who told us there were no masses, and she would likely just grow out of it. A few months ago I hit my limit. If this is something that she needed to learn to do better, then I needed to know. So I went to the walk-in clinic. What a discouraging visit, but it was such a representation of the health care system here in Canada. “I’ll give you a referral to the ENT in St. John,” he said, “but they’re not going to find anything.” Absolutely infuriating.

Within the week we had an appointment booked and not much after that we went to visit the wonderful Dr. Singh in Saint John. She was so good with Stella! Within 10 minutes she told me that she could absolutely see the reason for the noisy breathing. Stella has significant scar tissue on her vocal cords which means they are not as “flexible” as they should be. This means her vocal cords get “stuck” halfway when she tries to breathe in, creating that wheezing sound. Or “stridor” as we were corrected by the doctor at the walk-in clinic.

We walked out of the ENT office with the promise of an appointment with a Pediatric ENT in Halifax, Dr. Johnson. And that’s how we finally learned about Stella’s scarred vocal cords. Getting an answer after such a long time felt like a load off my shoulders.

Why Are Her Vocal Cords Scarred

Stella was intubated within 15 minutes of being born at 3:35 PM on September 13, 2016. I still remember watching the monitors and watching her heart rate jump (after what seemed like forever) from 30-40 bpm to 170 bpm. If I remember correctly, several of the staff that were with me cheered when they saw that. Because Stella was so tiny, intubation needs to be so precise. The medical team even performed x-rays and ultrasounds to confirm the breathing tube sat in the right position. However, babies move and are moved. The tubes would have moved as well.

We are just so grateful that she’s here, and the vocal cord scarring doesn’t change that at all. This is what Google says about the topic: “Prolonged pressure from the breathing tube’s cuff can cause ischemia (reduced blood flow), leading to tissue inflammation, ulceration, and eventual fibrous scar formation as the body heals.”

The Progression of her Breathing

Stella has not grown out of the noisy breathing stage. In fact it is only getting worse. We are just concerned that it may result in bullying or self-consciousness about this issue. That is something we absolutely want to prevent! She does this especially when she’s very active, but even when she’s sleeping it is noticeable.

Her voice is also softer than most kids her age, just a quiet reminder of her scarred vocal cords.

The Next Step: Microlaryngoscopy Bronchoscopy

We have only had a quick scope done so far, and are now waiting for a microlaryngoscopy bronchoscopy. This will give a better idea of what is really going on and if (hopefully) something can be done. As the vocal cord is internal, it is impossible to do something topically the same way you would to heal an external scar. The helplessness in this situation is hard at times.

The MLB is not a surgery in the way that they make any cuts, even though it is called an exploratory surgery. It just means the doctors will put Stella under general anesthesia while they take a better look.

Faith, Fear, and Gratitude

Honestly, this diagnosis has been such a reminder. A reminder how blessed we are to still have Stella with us. And how different life could have been without her. We will take this any day over not ever having gotten to know her. Knowing that she is going to be put under anesthesia again brings back so many memories. At the same time there are so many questions going through my head. What if she needs a risky surgery? How do we make that decision? She may talk very softly (also a symptom of the scar tissue) but her voice means a lot. We don’t want to lose that part of her!

This issue has certainly played a part in teaching me more long-suffering. On the other hand, it has also allowed me to share her story and our faith with so many strangers that we’ve met in the 10 years that she’s been in our lives.

A Message to Other Micropreemie Mamas

To any parent of a preemie, I believe that once you are a micro-preemie mama, you’ll always be a micro-preemie mama. It is a part of you. The beeps, cords, tubes, masks, smell, lights… all of it. It never leaves you. God has chosen you to be this baby’s mama, for however long or short you get to keep him/her. Cherish it. Even though those early days filled us with uncertainty, we now see how incredibly special they truly were.

Looking Ahead

Surprisingly, this surgery is happening sooner than expected; next week Monday. Stella has mentioned she is excited and yet not ready to “go to sleep”. The IWK has done an amazing job at having preparatory videos, etc., and Stella has made some very good decisions, starting a list of the things she’d like to bring, but has not yet made up her mind at if she’d like to ask to have her mother come with her to the operating room until she’s asleep. She’s nine years old, after all, almost old enough to start doing some things on her own.

If you’re walking a similar road with a preemie or noisy breathing in your little one, I’d love to hear from you. Feel free to leave a comment below or email us directly. You’re not alone.

Thank you for reading and for being part of our journey as we share more lifestyle content alongside our brand photography work. God is in the details, even the hard ones.

P.S. Yes, I know this blog post came much later than promised. The same day that we posted our last blog post, the community we came from in Ontario experienced a heartbreaking loss, and I kind of imploded. Since then, we’ve experienced a few other big losses and it has taken a bit to have extra time on my hands to photograph and write. My sincere apologies!