I remember the first time M clapped her hands. It seemed like it took her forever to accomplish the goal. I think of this sweet, short moment a hundred times a week- when I'm pushing her to do more, when it seems it could be years before she ever walks on her own, or when I feed her each meal, longing for the day she uses the spoon all by herself for each and every little bite. Well today, she has given me another little moment to add to my catalog of memories that keep me going when it seems like the world is off tilt. Today, she drank from a straw!
For the first years she had a feeding tube, so she only had a few sips from a cup now and then. She never drank from a bottle. Nurses explained she just didn't have the 'sucking reflex' most babies are born with and therefore wouldn't drink from a bottle. I think it is most likely because her nasal airways are small and she is unable to breathe through them. It's not pleasant trying to suck from a bottle and hold your breathe simultaneously; swallowing and breathing at the right times so you don't aspirate or choke. No wonder she didn't want to eat or drink anything. The doctor told me most babies are naturally 'nose breathers.' He was amazed at how well she did breathing only from her mouth. But before she could leave the hospital, they wanted her to have a trach placed to give her a second path for breathing, mostly for safety reasons. I had a lot of mixed feelings about M having a trach. Most of them came from ignorance and unfamiliarity of knowing anyone with a trach or anything about living with a tracheotomy. Most of all, I was afraid she wouldn't be able to make sounds- and for a blind infant, this was a big deal. If she couldn't see and couldn't talk, how would she ever learn to express herself? And even if she could eventually have the passie-muir valve that would allow her to make sounds, would she even want to talk by then? What if it was years before she was ready for the valve? What if the early years of not being able to make sounds, made her not want to communicate much at all? I was afraid it was going to make her world that much scarier... that much smaller... But I had to trust the doctors. It was the only option they said for the time and I wanted to take her home so much. I wanted her to sleep with monitors beeping every minute. I wanted her to cuddle up in my arms, safely swaddled in her blanket and rock her to sleep each night.
There were a lot of "what if's" in the first days of M's precious life. I wasn't use to not knowing and being out of control of something so important was killing me. I wanted to know every detail of every little thing. I said the whole experience must have been God forcing me into learning about medicine. Before M came into my life, I never wanted to be a doctor or a nurse, or a biologist or anything related to medicine. She had the tracheotomy days later and within a week, we were on our way home to stay- besides the numerous doctors' appointments we had for weeks following. We brought a car full of medical equipment and supplies with us, but we still slept in our own bed every night we could.
M had the trach removed in 2007 when she was 2 1/2 years old, about the same time the feeding tube was removed. It was a year of progress! Today she still struggles to eat and doesn't chew food like most of us. But she is learning and progressing. Drinking from a straw may not seem like it is even important for some, but for M it is years of practice and learning tolerance of having something foreign in her mouth. She hasn't mastered the task yet but I know she will soon. Just the idea that she knows how the straw works by sucking on it to get the milk to come up just right, not too much or too fast, shows how much she is learning. I'm praying this is just one step closer to learning to eat solid foods that I don't have to puree first. I'm so proud of you M! You are the sweetest girl in the whole wide world!
"It has long been an axiom of mine that the little things are infinitely the most important." - Sir Arthur Conan Doyle