Disclaimer: There are many, many videos in this post. Don't worry, they are all very short. : )
Why is Marissa's voice so important to me? Why does the risk of the reconstructive surgery changing her voice forever weigh so much heavier on me than the increased risk of aspiration, or any other issue, risk, or problem?
When the idea of the trach was first brought up to us, the fact that she would not have a voice was the first thing that popped into my head. It was the issue that made me the saddest about this new life we would all be entering into.
I love baby voices. A baby's cry can bring me to tears myself. Especially life's first cry. No words can even describe what an incredible sound it is.
I absolutely adore baby babbles. If I am having a bad day, all it takes to put a smile on my face is to hear a baby laugh. I know Rissa is not a baby anymore but she has the best little kid voice I have ever heard.
Starting the night she was born, she was intubated for a week at a time, every other week, until she got her trach. She was never off the vent long enough for her vocal chords to heal so we never really heard her true voice. Any vocalizations we did hear were very quiet, stridorous, and raspy. These sounds were still so precious to me. It took almost a year after she was born for her to tolerate the PMV (purple speaking valve) so she could have her true voice back.
I can't explain what it is like to watch your baby cry a voiceless cry, other than to say it gives me an awful, aching pit in my stomach. It is pitiful to watch your baby try to use their only means of communication only to be rendered silent. Other trach parents certainly know what I am talking about. Even when she was on the vent, the effect was the same. The first time my mom visited Marissa after she was born, she told me the thing that made her the most emotional was watching her cry that silent cry.
Other trach parents can also relate to learning to listen for new, untraditional sounds to clue us in that our babies need something. Soon after we brought her home, I could be in the other room and immediately tell when Marissa started crying. While there is an absence of a voice, they do make different rattly sounds with their secretions moving back and forth inside the trach tube. And a cry rattle sounds different than any other.
Here she is the first night she was able to tolerate the PMV. She could only make the tiniest, softest noises but it was music to our ears.
This video shows her voice getting stronger, about a month after she learned how to tolerate the PMV. She was almost a year old and we could finally hear her laugh!
This video was shot when she was about 13 months old. She was finally babbling!
And this one (I have posted before) is one of my favorites. She was about 14 months old and saying her first word. Dadadadadada!!
I have always taken my voice for granted. I used to think nothing of going to a football game and screaming at the top of my lungs till my voice gave out (sorry Michelle!). Now, even though I still do my fair share of yelling at games, I always reign myself in by thinking of how Marissa has fought all her life to have a voice. It makes me thankful for my own.
I know that if this surgery changes Marissa's sweet voice permanently, I will still be thankful. Thankful that she is able to breathe without a trach. Thankful that she has a voice at all. Thankful that she is here with us at all.