A Year of Strength and Hope: Ellie’s Journey with Her Trach

Ellie’s journey has been nothing short of extraordinary, filled with moments of heartache, hope, and an overwhelming amount of faith. After Ellie’s tracheostomy, it became difficult for her to vocalize. A trach, though life-saving, blocks the air from reaching the vocal cords, which is why babies with trachs often need a special valve to speak. Ellie’s lungs were not ready for the valve, and we have yet to hear her speak again, though sometimes, we catch a faint sound when there’s a leak in her trach cuff. It’s a bittersweet reminder of the voice that once filled our home.

I think about the day Ellie said “mama” on October 3rd, just before she had the trach placed. That moment was a gift from God. I remember praying before we were told she needed a trach and hearing a definitive “no” in my heart. At the time, I thought that meant no, not ever. But, as time went on, we were faced with the need for a trach again, and I prayed once more. This time, the answer was a resounding “yes.” I was shocked, but I knew it was what was best for Ellie, even though it was hard for me to accept at first. God, in His infinite wisdom, knew when Ellie would be ready, and He knew that I needed that moment when she said “mama.”

Looking back, I realize that God’s timing was perfect. He knew when Ellie’s body would be strong enough to handle the trach, and He knew that I needed that small victory to help me face the difficult journey ahead. I was angry and scared. I didn’t want 24/7 nurses in my house. I didn’t want to worry about trach care every night or dread the weekly trach changes. I didn’t want to carry a ventilator around with me or be limited by oxygen tanks. But despite all my fears, I see now that it was the right choice.

The trach has given Ellie more comfort, allowing her to be more active without becoming exhausted so easily. There have been times when I’m sure Ellie’s trach has saved us from dangerous situations. For that, I am thankful. God gave us the strength to adapt to this new way of life, and while it hasn’t been easy, Ellie has continued to grow stronger and more resilient.

As we mark Ellie’s first trach anniversary, I look back on how far we’ve come in this year. We’ve faced so many challenges, but we’ve also had moments of grace and peace. I still pray for the day when Ellie no longer needs the trach, when she can breathe freely and speak without barriers. But until that day comes, I’ll continue to be grateful for every small victory, for every sign that Ellie is thriving in spite of everything.

I know we’re still on this journey together, and I know that God is still with us every step of the way. Ellie has already exceeded so many expectations, and I believe she will continue to surprise us with her strength and courage.

Happy One-Year Trach Anniversary, Ellie Girl. We are still praying for that miracle, for the day you can finally be free of the trach, and for all the beautiful things your future holds. 💖🙏