Breathe, Grow, See

What a week it has been! Did you know that breathing is really hard for someone like me? All my friends that come visit sure make it look easy!

Wednesday was the big day. Actually, Friday was supposed to be the big day, but I just couldn't wait. I was feeling great on Monday and Tuesday and had the nurses turn down the settings on my ventilator again and again. So on that morning, even though there were a few hiccups in my blood saturation levels, I decided to give the nurses a break and take on some of their responsibilities. I started by doing lots of stretching to make sure I was warm and limber. And then I extubated myself. It was much easier than a big word like that may seem.

Okay, so maybe it wasn't the best idea. In hindsight, I guess it didn't really save the nurses any time or effort. But the deed was done. The nurses took my lead and got rid of the ventilator. In my excitement I might've also pulled my feeding tube a little too much. Even I knew that I wasn't ready to breathe AND swallow on my own - it's just that I don't quite have the precision with my hands that I'd like. I ended up aspirating on some milk, which was not a good start to my life without a ventilator. 

Now, this is the point where everything gets a little fuzzy. All I remember is lots of beeping, at least six hands all around me, and my mom watching from across the room. Later my mom said that she had to leave the room when I started turning blue. The first thing I remember upon waking up was being lifted out of my bed and being laid down on something soft and warm. That's when I heard a very familiar sound. It was my mommy's heartbeat. She was holding me, and although I was struggling to breathe through the little oxygen tube in my nose, I felt safe.

Just a little while later I was hooked up to a different machine. Rather than forcing a constant, high-flow stream of oxygen (nasal cannula), this new device puffed air into my nose (CPAP). I wasn't sure what to think of the contraption. On one hand, it sure was nice to have the tubes out of my mouth and the loud oscillator shut off; but on the other, I had two long nozzles sticking in my nose, stretching my nostrils like an inner-tube in a bike tire. The other problem became evident when they turned my oxygen way up without making much of a difference. All the air going in my nose went right out of my open mouth. Why did I have my mouth open, you may be wondering? Because I don't know what it's like to have a closed mouth - I've never experienced that! My mom was kind enough to help me try to learn. She gently pushed my chin up and my head down to close my mouth. As soon as it was closed, I started feeling much better.

All day she held my mouth closed so that I could breathe. I'm only one and a half months old, and I already know I have the best mommy.

As soon as my mom and dad had to leave for the nurse's shift change, there was no one to hold my mouth closed. I had to breathe harder and harder to feel like I had enough oxygen. The respiratory therapist told my parents later that my skin was stretched so tight across my ribs that I looked like a skin-colored skeleton when I inhaled. All I know is that I was ready to be back on a ventilator.

Everyone agreed with me, and within the hour I was back. It wasn't the oscillating ventilator like before, it was a fancy new machine that simulates natural breathing. It encourages me to breathe on my own by assisting my inspirations (that means to inhale). They also say it's easier to ween me from this one than the other one. But that night I didn't do any of the breathing at all. I was so tired from being off the vent for over seven hours, that by the time I was back on, I went to sleep and let the machine do all the work for me.

The next day I was feeling well enough to leave my bed for awhile so that dad could hold me. I think he really liked it, and I liked it when he kissed my forehead.

Just a few other things before I say goodnight. My grandpa Stout was doing some math the other day and determined that if I continue at my current rate of growth, by the time I am six feet tall I will weigh twelve pounds. I sure hope something changes before then!

There is also another miracle to add to the ever-growing list. I had my first eye exam on Saturday. When the eye doctor came in and saw all one pound thirteen ounces of me, still connected to a ventilator after a month and a half, he did not hesitate to voice his doubt. He even said, "this doesn't look good." But as hard as he tried to find something wrong with my eyes, he just couldn't! The blood vessels are just starting to grow and expand, so there is still the possibility I might develop eye problems. But the fact that my eyes are healthy after all the oxygen I've had sure is a miracle!

Lately I've just been trying to grow and save up energy for the next time I try to get off the ventilator (and so that I weigh a bit more by the time I'm six feet tall). The other good thing about this new ventilator is that my parents can hold me once a day, if I'm feeling up to it. And nothing beats that!

Love,
Marshall