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.
I know there is a Mother somewhere who needs to read this and there will be many others. It is so wonderful for you to share your struggles and tough times in order to help someone else overcome and have the strength they may not have known they had. I know this was not easy to write and share. You are blessed to touch the lives of people near and far; some you have met or will meet, others you will never personally know; some will only need to their hopes confirmed by your stories, others will be truly inspired by you and be able to do new things and have new hope. You are one of kind, but it would be an amazing world if it were filled with people like you. Thank you on behalf of every Mother with a sick child who will ever read this, and “thank you” from me. Times are tough for people in a lot of different ways, but you inspire strength, determination, and reassurance as I face my own battles.
My grandaughter is a trache baby. Her name is also Brynlee. She was born in March 2013 at 27 weeks and spent the first 6 months of her life in the NICU. I am amazed and extremely proud of my daughter and her husband. They are the strongest people I know. Our little one is thriving and growing. She has just started crawling. I am one proud grandma. God Bless all of the trache baby parents.
That was so beautifully written. Indie just turned 12 and she’s unstoppable and the funniest girl I know, trach, g-tube and all. Gifts come in the strangest packages but they are amazing nonetheless!
I remember searching the internet for information about babies with trachs when they started discussing my son getting one. I wasn’t aware of the trach baby group on Facebook at that time either. I feel like it would have been so helpful and I wouldn’t have felt so alone. Thanks for sharing this, I hope parents can find this and find comfort.
Thank you for sharing your thoughts! It’s like you took the words out of my mouth. God bless you and your family
Honestly, I’d never heard of trach babies until I read about Brynlee when she was born. I believe this post will be inspiring to other moms and I feel you’re doing a wonderful job taking care of your beautiful daughter.
Beautifully written and heart touching. When I was in nursing school I had a rotation with the littles, I got to take care of a little girl that had a trach. Thank you for sharing & you are a beautiful caring momma with your sweet beautiful daughter.
You really make it become real for those of us moms that have never experienced this – I feel I can understand just a SMIDGE of what you went through hearing these details. You are so strong to get through this time – I know I would have been freaking out as I don’t do well with medical “stuff” … but you’re right – in the end you do what your child needs… you’re an amazing mama and thank you for sharing this with the world – it is a blessing!
I love that you are sharing your story and helping other moms, you are such a blessing to them.
Tomorrow my daughter who was born at 26 weeks and we have spent 6 months so far in the NICU, with months to go will get a trach. Thank you for posting this, I can relate to so much and I needed to hear this. Bless your family and all families of trach babies.
I so hope you are right. My baby isn’t born yet, but it’s already being taken for granted that she’ll have a trach and a feeding tube. I’m terrified. She is my fourth baby. Just when you think you have this parenting thing down, life throws you for a loop…
Do you have any recommendations for cute gifts for a baby with a trach? Medical alert bracelet maybe?
I’m sorry that I’m late in my reply. I would suggest any of the same gifts you’d give a health baby- a new outfit, a picture frame, swaddle blankets, etc. Trach babies are sent home with all of the medical equipment that need including oxygen saturation monitors, apnea monitors, etc. if needed. Dressing my trach baby felt like the only “normal” thing I could do some days so I loved clothes for her.
I’m a ex PICU nurse. I worked with a lot of folks who required a trach. The reasons vary. I know much more than I did at the start. It was very hard work. One thing that I did was make some notes on each patient. I found solace in praying for them. I also had a first aid kit with supplies.
I performed daily visual checks on my cases. I had a list of the duties in my folder. We also worked in a team to help those in need. We held weekly meetings to review cases. I did research on new care techniques.
Thank you for writing this post. We are headed that direction with our little girl Brinley (who would have thought ?) and even though I know it’s the best decision for her I’m still so scared/sad. Coming to terms with it has been difficult and still at times brings me to tears but I can’t wait for the day that my baby girl gets to breath without struggle. It’s hard but I know we can do it. Thank you for sharing your story ??
My grandson, Ke’Ron, has a trach and this is a completely new experience for my daughter and our family. It has been very hard and my daughter is sometimes still overwhelmed with all that has to be done to care for him. We are praying and asking the Lord to help and strengthen her each day. The baby is so adorable and we love him so much! He is a blessing in spite of everything! GOD bless you and your family and all the trach mommies!
My son had severe breathing problems as a newborn. I decided that this was not normal so I emailed a pulmonary specialist for advice. I also spoke with his neurosurgeon too. I sent them some pictures.
At five weeks old, my son was re admitted to the hospital one day for numerous tests and observation. One thing led to another.
He had so much difficulty breathing at night. We spent several weeks there on both the pediatric intensive care floor and the pulmonary floor. It was nerve wracking at times. I am not going to lie. It is hard but rewarding isn’t it? He is trach free now. He was decannulated last year around this time.
On the day of his procedure I was relieved honestly however. Since that day I learned a lot of new skills, new words and far more about how our body actually works. Me and my partner have also made several new friends and practiced our life saving techniques too. It seriously saved his life. All hail the tracheotomy. And the PMV. Plus nice nurses, lovely skilled speech therapists and qualified amazing specialists as well.