Sweet mama, I never thought I would be able to write this post. Everything was so scary and I felt desperate. How would I ever get the hang of this trach-baby thing when every time I thought about it, I broke out into a sweat and my eyes teared up. It was months before I could get through a trach change (my husband did the change, I was just there for uhhh… moral support? except I wasn’t very good at that either) without having a complete and total meltdown. Justin would change Brynlee’s trach and I would find myself short of breath, sitting down to keep from falling down, and for the next few minutes, it was all I could do to keep breathing.
A little over a year ago, I was in your shoes. Maybe not your exact shoes, I’ve learned all of us trach mommies have different diagnosis’s, different babies, different stories, but we all stick together. We thought we were having a healthy baby girl, but that turned out to be far from the truth. Within minutes of her birth, we knew there was something wrong. She was soon transferred to a NICU which would become our second home during the holiday season 2013.
The first time “trach” was mentioned to us, it was in a “We really don’t think she will ever need a trach. It’s a worst-case scenario here and we consider her mild to moderate.” sort of way. So we kind of brushed it off- we weren’t going to be trach parents. Within days, Brynlee’s little body had begun to wear down and she could no longer hold her oxygen saturation where it needed to be. If you are reading this as a trach mommy, I know that I don’t have to explain that to you. You’ve held your breath as you watched those screens and waited for the alarms to sound off that your baby needed help. You know all about sats and respiratory rates.
We tried to be prepared for anything, but I was still stunned when the doctor sat us down and said, “I’m conservative with trachs, but we really think she needs one. How do you feel about this?” All I could muster was, “You do whatever it is that she needs. Whatever she needs.”
So at 9 days old, we handed our baby girl off to a team of surgeons at Hunstville Women & Children and the next time we saw her, she had a tube in her stomach, another in her trachea, she was on a ventilator, sedated, and paralyzed. She came through the surgery just fine and when I held her for the first time, it was like she breathed a sigh of relief to let me know how good it felt to be able to breathe easily.
What I want you to know is that it’s okay to be scared and to breakdown. Yes, you have to pull yourself together and be strong for your child, but it is okay to be vulnerable. You need to be open and honest and share your fears and concerns. Don’t hold all of that in. You will eventually burst and let me tell you, it isn’t pretty when that happens.
I know it is all so overwhelming. No amount of preparation can change that. There are many decisions to be made and the burden of those fall on your shoulders. The decision to trach your child is a tough one no matter how necessary it may be. I almost drove myself crazy between the moment the doctor told us she needed a trach until the moment we handed her off. I googled as many trach-related terms as I could find and what I found was scary statistics that did not help at all. Mama, let me just tell you that those terrifying statistics about tracheotomies do not apply to your baby! Your baby is not a statistic. Even though I knew she needed a trach, it was not easy to say “Yes, here take my tiny newborn and put a tube in her.” No, it was excruciating. I was blessed that my husband was strong and decisive while I fell apart.
I want you to know that you will find a routine. You will learn how to take care of your child. You’ll learn how to best organize that truck-load of supplies in your small space. You’ll learn how to suction your child in public without a second thought. You’ll learn how to overlook the rubberneckers and instead bask in the miracle of your child. You’ll learn the easiest way to load everything up for an outing. You’ll learn the best times for appointments. You’ll learn how to plan to get to those appointments on time. (It took us months to actually arrive somewhere with more than a minute to spare.) You’ll learn to trust your gut, your intuition, and to keep pushing until you get what is right for your child. You’ll become a nurse for your child. You’ll learn when it’s time to find a new doctor and you won’t be scared to do what is right for your child. You are strong. You’ll learn exactly how strong you are, how to keep going when you are exhausted, and how to do whatever it takes to better the life of your trach-baby. You’ll learn how to change that trach without flinching. You might even find yourself in the dressing room at Target reinserting a trach after your baby has pulled it out in the middle of an aisle. (Ask me how I know.) You’ll learn how to clear plug with saline without complete panic and if the plug won’t clear, you’ll learn how to change a trach in an instant half-asleep. You’ll learn to hear the softest sounds, the raspy sounds, the quietest cry and you’ll know exactly what those sounds mean even when they are barely there.
You will learn. You will become an expert on your child. You will be the best mama and the most important advocate. You really can do this. It’s not easy. In fact, it’s really, really hard some days but it also completely worth it.