Brynlee's Journey

Brynlee’s 2nd Trach-iversary | Pierre Robin Sequence

Today is Brynlee’s trach-iversary. On this day two years ago, I tearfully handed our 9 day old daughter over to the anesthesiology team and watched them wheel her out of the NICU toward the OR. I knew when I saw her again she would have a tracheotomy and a g-tube. That would be the first of many times that we would hand her over and watched as she headed toward the OR. Each time, we prayed that she would come back to us. Two years ago, we had no idea where her journey would lead but we knew who would guide the way. As we sat in the lobby at Huntsville Women & Children’s waiting on updates from her team of surgeons, we could feel the prayers surrounding us. I was extremely anxious and on edge but I knew she was going to come though the surgery. When we saw her a few hours later, she was trached, she had a g-tube, and a stitched incision across her tiny belly. She was sedated and on a ventilator. I remember watching as they rolled her down the hall back into the NICU after surgery. There were so many tubes and wires that I couldn’t see her face. All I could see were the machines.

Brynlee Dec 16 blog

When we returned the next day, Brynlee was off the ventilator and I held her. For the first time, she did not struggle to breathe. She was completely content and she breathed a sigh of relief. In that moment I knew without a doubt that we had made the right decision for our daughter. I watched her monitors in awe as her oxygen sats held steady. For the first time, I could relax with my daughter in my arms and not worry that the way I was holding her was going to harm her or cause her airway to be blocked even more. She could breathe.

Brynlee Pierre Robin

Two years ago we didn’t know where her journey was going to lead us. We didn’t know how long she would need those tubes to survive. We didn’t know how many surgeries she would require. We didn’t know that once she began to thrive, her Pop was going quickly go downhill. We didn’t know that he would never see her turn 1. I didn’t know that my tiny little girl with all of her complications would be my saving grace. She held me together when my world fell apart. She gave me a constant focus when I needed one and she lights up my world still.

Brynlee Dec 17 pierre robin

There were many unknowns two years ago when Brynlee was trached, but there was one who knew. He knew. He knew each triumph and each heartache we were going to face. I found comfort just knowing that He knew. Even on my worst days, I knew that He knew. Brynlee’s diagnosis was not a surprise to Him. Our little girl and all of her medical issues were part of His perfect plan. We were meant to be a trach family and today I am so thankful for this trach-iversary.

shiley trach baby 3.5 neo

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