Accepting the Trach: Hope for our CDH Baby
We first heard mention of the word tracheostomy when I was 26 weeks pregnant with our son. We were at a consultation at our state hospital. We had spent the day having tests ran, MRIs done, and finally ended the day in a room full of doctors, nurses, and caseworkers. Before the meeting started, I could already tell that they had no hope of saving our son. As the meeting progressed and we heard their plan, a cardiologist told our family that we were looking at a trach for our son. Before he was even born and given a chance to breathe on his own, the team had decided that he wouldn’t be able to. I was furious, devastated, defeated.
Looking back, I’m now thankful for that conversation. While it was hard and something I didn’t want to hear, the word tracheostomy became part of our vocabulary roughly a year before it actually became our new reality.
Our son was almost eight months old when we were faced with the choice to move forward with the tracheostomy. Landon had many surgeries that “got in the way” of trying to get him extubated. Every time we turned around, there was something we had to focus on that was more important than getting that breathing tube out. But when the time finally came to plan for extubation, our team (a team that DID have hope in saving our son) did all they could to set Landon up for success. We had a date set, ready to get that breathing tube out...FINALLY. But the day before that extubation attempt, it became apparent quickly that we were not going to make it to extubation day. Landon become lethargic, his ventilation was low, he wasn’t exchanging CO2 the way he should have if he was going to be able to breathe without that breathing tube.
Within a few minutes of running a blood gas to check his CO2 levels, we were sitting in a room with our team that had taken care of Landon since birth. We began to talk through what had happened, his history, and then we were presented with a decision: wait a few weeks and try again or move forward with a tracheostomy. The team gave us time to think about it, but we knew before we even walked out of that room what our decision was. We HAD to get our boy a tracheostomy.
The morning after we decided to move forward with Landon’s tracheostomy, I was scrolling through Instagram. A sweet picture of a baby caught my attention. The baby was asleep, holding onto his trach. At that moment, I felt peace over our decision. A decision I had prayed we wouldn’t have to make. But at that moment, I knew that what was best for him was the trach. Everything that was scary and intimidating about my son having a trach was erased by the excitement of beginning to see my son grow and learn new things.
As soon as Landon recovered from his surgery, and we were able to get his vent settings just right, my husband and I began to become hands-on with his care. We got involved and had our nurses, doctors, and RTs teach us EVERYTHING we needed to know to care for our son. Because of this, when discharge came, we were ready. We weren't going to let anything keep us from getting our boy home!
Since receiving his trach, Landon has moved mountains. He’s gone from a tape filled, emotionless face to his big chunky cheeks with a smile from ear to ear. He’s gone from spending his entire day on his back to sitting up unassisted and playing simultaneously. His playtime has gone from minimal movement to actual, intentional play.
Having a child with a trach and hooked up to a ventilator is not what I had planned. It’s not how I envisioned taking my child home from the hospital. I didn’t plan to become a “medical mama,” but I am one. And my son deserves the best. So that’s what I do each day. I try to be the best mom for my boy because that's what he deserves.
Special thanks to Taylor Tatum for her contribution to Learning to Accept a Trach!
Email stories@tinyhero.org to learn about how you can write for Tiny Hero.