Your second year got off to a great start. We said goodbye to tube feeds- we kept the tube for a few months just in case you lost weight. Thankfully that didn’t happen. We celebrated your second Christmas which was your first at home. My heart ached for you when you spent that first Christmas in the NICU, tears rolled down my face as I watched your brother and sister open gifts that morning without you. I was so thankful to have you home but my heart ached for your Pop. My grief mixed with the flu- the sickest I had been in 8 years just happened to be Christmas Day 2014- means that I honestly don’t remember much of the holiday season last year. I know I wasn’t the mother you all deserved during that time and I can never change that or get that time back, but I hope you know how much it meant to me to have all 3 of my children at home for Christmas.
You had an appointment with Dr. Shirley who became your ENT after he scoped you during your cleft repair surgery in October. He gave us the okay to begin capping your trach. After successfully capping, we would schedule a sleep study to see if you were ready for decannulation. Capping went amazingly well- we could hear your little voice and you were able to cap for long periods of time. Around that time you learned to pull your trach out. I remember your dad and I were sitting on the couch one night after he had out you to bed and we realized that we could hear your little voice clearly. You could not wear the cap at night so being able to hear your voice could only mean one thing- you had pulled your trach out. Indeed, you had and you were quite proud of yourself! Every time your dad would put the trach back in, walk out of your room, and sit down on the couch, we would hear your voice again. I think you ended up pulling it out 5 times that night. We should have changed your ties then to a less stretchy collar but we didn’t. You were still wearing a neonatal trach which was becoming a little short meaning it would pop out easily.
We heard you laugh for the first time on January 22, 2015. We had waited to hear that laugh your entire life. It was the most beautiful sound and I cried, of course. We were all so excited! Your brother and sister giggled along with you while your daddy kept tickling you. That cap gave us your first laugh.
And then it happened. Your dad and I had left you with your Nana for what I think was the first time ever. We went to grab food and came back. I think we watched American Idol. You were capped so we were hearing your little voice loud and clear and you were even making new sounds. You had not needed suction in hours. All of these things probably should have caught my attention but you were acting so normally that I thought nothing of it as you played in the floor. I stood up to begin packing everything up (you required equipment, kiddo) and as I soon as I looked down at you, I knew. Your tiny little 2.5 NEO trach was out and at that moment, it hit me that it had probably been out for a while. We took you to the bed to try to put it back in and my gut was right- it had been out a while. Too long. Your stoma had closed just enough that we could not place the trach back in. Your dad tried and tried until I finally said “Enough. Don’t hurt her.” At that time my entire body was shaking and I was overcome with a thousand what-ifs. I dialed Dr. Shirley’s office, went to the emergency line, and got ahold of him at home. He was extremely calm and felt confident that you were going to be okay without the trach. You were showing no signs of distress so we went home, packed bags for everyone, then arranged care for Bryson and Bella before heading to Children’s of Alabama in Birmingham with hopes of joining what is referred to in the tracheotomy world as the “naked neck club.” On the way, I sat in the back with you, updated everyone who followed your journey on Facebook, then I looked back at photos from earlier in the night. Your trach had come out before your dad and I ever left to pick up food so it had been out for approximately 3 hours before I noticed. I’m sure that makes me sound like a bad mom but you were right under me, it’s just that you no longer needed the trach so you simply sounded like your were capped. If you had needed the trach, you would have shown signs of distress when the trach popped out. It was time. Only God knew when it was time, but oh did He know.
We arrived in Birmingham super late to a packed emergency room. Thankfully Dr. Shirley had called ahead and we were taken straight back. You were bouncing off the walls at this point but they needed to keep a pulse oximeter on you. They gave you a little toy camera to try to calm you… it worked, maybe, a little. We were finally taken up to a room in the Special Care Unit- the floor your always stayed on. I think it was after midnight at this point. You slept with monitors and your sats stayed exactly where they needed to be. Your oxygen level was 99-100% with no help from a trach. You had come a long from the newborn who had oxygen levels desatting into the 60s before you were trached. Dr. Shirley came in the next morning and said all was well- we could go home without a trach. You were making all kinds of noises, sounds we hadn’t heard before, and you were so proud of yourself. I loved hearing you! I remember that I had brought in your suction machine the night before and as we were packing up to head home that morning, I just looked at it and realized we were finished with it. We were done with suctioning, with plugs, trachs, go-bags, emergency kits- all of it.
On the way home we stopped at Applebees which had become our routine lunch after appointments in Birmingham. You sat in your high chair eating your mac & cheese with that little stoma just shining for all to see. It did not feel real. We took you- only you, no extra equipment- into a restaurant and we didn’t have to suction your trach. You were a member of the naked neck club. We were all members of the club!
Thinking back, you had plugged that morning and I couldn’t clear it which meant your required an emergency trach change. I did it like it was nothing because it was my normal. I never thought I would be able to change a trach without tears and shaking but I could do it without flinching by the time that day in January 2015 rolled around. When I changed your trach that morning, I had no idea it would be the last time. God knew. I even had a photo because I often documented what it meant to be a trach family on my Instagram.
You do things your way, Brynlee. I hope that never, ever changes. You usually do them suddenly and just the opposite of how we expect but you keep us on our toes.
They said you would need the trach until you were 3 or 4 years old. At 13 months old, you were trach-free. Keep proving them wrong.
Dear Whitney, if that makes you a bad Mom, I shouldn’t even have custody of mine. You know we are only human dear. It was simply meant to be. It sounds as though you were actually keeping her to close to be able to see it. You would have noticed the sounds of distress if there had been any…and just think, if you had re-trached her, you all wouldn’t have gotten to join the naked neck club so early 🙂 love ya lady. You are a great Mom and a perfect Mom for those 3 adorable munchkins 🙂
I’m so happy I found your story! This morning at my 30 week ultrasound it was detected that my baby may have PRS; after much stress and anxiety it gives me such relief to see a happy, beautiful girl surviving this syndrome! Her first laugh brought tears to my eyes! Thank you for sharing your story!