From the moment they enter the world, we eagerly anticipate the first sounds of our baby. We expect them to arrive crying. My girls both entered the world crying. Then came Noah. Complete silence, not even a peep of sound. I remember asking the doctor many times if he was ok and she assured me that he was fine. His Apgar score was good and the nurses assured me he was healthy, but deep down in my mommy gut I knew all was not well. There was a nagging doubt that something was wrong. I was correct and our long 4 month stay in the hospital began.
It took a long time for the CCHS diagnosis but once we discovered it, the doctors moved quickly. He had his trach the day after the diagnosis. I had done some research on trachs and knew that it would impact his life in certain ways but I was not prepared for the reality.
Recovery from trach surgery was relatively easy. We were so happy to get Noah extubated and we finally got to see his sweet little face without all of the tape and tubes. Then he cried. I was shocked. There was no sound whatsoever. My sweet little boy was pitching a fit and there was no sound. His little face was red and tears poured down his face and all was silent. The only sound was the beeping of the ventilator. My heart broke. I realized that having the trach was going to be harder than I thought.
Once I got over the initial shock, it occurred to me that even though he was silent, I would still be able to hear him. If he cried while on the vent, I would hear the vent beep. If he cried while off the vent, I would hear the small breathless sound of air being pushed through the HME. I learned to distinguish his little sounds and realized that I could care for him properly even without him making any noise. In fact, when people would ask me if I knew when he was crying, I got annoyed. Of course I knew when he cried.
As Noah grew, he learned to make noise around the trach. We taught him some sign language but I always made sure he verbalized as well as signed because I was determined that he not rely on sign language alone. When he made that first small sound while wearing his HME, we rejoiced and praised him. We made a huge deal out of each small sound that he made. As he grew, he began to make more sounds and began speaking. That first word was music to our ears. I knew that he was not talking as much as my girls had at that age but I was so proud of how far he had come.
Eventually he started speech therapy and between that and his normal development, he began to talk. He has now completed almost 8 months of twice weekly speech therapy at the local school. His vocabulary has exploded and now that he wears the cap all day, he is loud and constantly being vocal. It took such a long time to get to this point but he has arrived.
Last week we went to the mountains for spring break. We went to a local pottery shop. It was not very crowded so the cashier was taking her time with us. While I was paying for our purchases, she engaged in conversation with Noah. She began asking him questions like what is your name, how old are you, are you having fun on your vacation, what is your stuffed bears name, etc. As usual, I got ready to translate for her but then listened closely. I realized that he was carrying on this conversation perfectly well and he did not need my help. After conversing with him for awhile, the cashier statesz that he speaks so well for a three year old. She said that she had not heard very many three year olds speak so clearly and understandably. She had no idea what that meant to me. We had tried so hard over the years to work with him and help him overcome the speech problems associated with the trach. That sweet lady gave us such a special gift when she said that he was speaking so well. I couldn't have been prouder of him. All of the speech therapies, the trials of getting him to tolerate the PMV and then the cap had finally paid off. Now I realized that everyone could finally understand him and he could communicate his thoughts and needs.
I realized early on to never take any small sound for granted. I cherish every cry, scream, and word. The other day we were shopping and Noah told me "I being loud mommy". Instead of telling him to be quieter I simply said "yes you are" and kept shopping. Every little sound means so much. Noise does not bother me in the least, in fact it does my heart good to hear him being loud. I love nothing more than to hear his little voice raised loud and proud. Never take your children's voice for granted. Every sound and word should be cherished. The words shut up are never used in our house.
Yes, trachs can impede speech development but there are tools that can be used to overcome this. It may take awhile, years in fact, but eventually the words will come and the trach voice can be heard.
The saying Silence is Golden does not apply in our house. Enjoy every little sound and word. Embrace the noise. Your children's voice is the sweetest sound you will ever hear. Never take it for granted and always listen to them. There is no sweeter sound than the sound of Noah saying "I love you Mommy". Our home is filled with the laughter, screams, words, and sounds of Beth, Hannah and Noah. I would not have it any other way.