Tuesday, March 25, 2014

A Dangerous Feeling

Dear Ellie,

The first four days after you were taken off of the endotracheal tube, we were nervous.  If your ventilator stats started ticking up, it would mean you were slowly losing altitude, at which point you would probably be reintubated.  If your ventilator stats started ticking down, it meant you were breathing more and more on your own and would probably be off of the tube for good.  For four days, you went neither up nor down.  But then, this morning, they went down.  And then later today, down again.  Strides that were once made over a week you've made in just hours.  Your lungs don't crackle perilously like they used to.  Your blood oxygen level doesn't swing wildly, anymore.  

We were resigned to the fact that you would be coming home with us on oxygen.  That you'd spend the first two years of your life with a canula in your nose, tapped into an oxygen canister.  But now?... maybe not.  When you first arrived in the NICU, you had two tiny neighbors, both of whom were about your age now.  They were both clearly worse off than you were, yet neither them went home on oxygen.

To make matters better, it turns out that we may have misplaced 100 grams of your weight last week.  All through the week, your weight mysteriously dipped and then you stopped gaining weight entirely.  Odd.  We assumed that your episode a week ago might have caused you to burn some calories.  When I examined your growth chart two days ago, I was dismayed.  Your weight was near the 10th percentile, meaning that 90 percent of babies at your gestational age of 32 weeks were heavier than you.  Granted micro-preemies always weigh less than babies still "baking" in utero, it was still low.

But then we did your weekly isolette switch (along with switching the inbuilt scale).  Incredibly, you were suddenly 100 grams heavier!  That's when we realized that you may have been gaining weight all week long, but because the scale was faulty, we simply didn't notice.  According to the growth chart, you are now in the 35th percentile instead of 10th.

For the first time in two and a half months I actually feel... safe.  Like we might have some semblance of a normal life in our future.  Like we might sail through the rest of our stay here with fewer and fewer problems.  What a dangerous feeling.


  1. Sounds like Ellie was "holding her breath" through the weekend, too. So good to hear good news for her! May it continue! What is Ellie's weight now?
    Were those early neighbors about the same gestation and size?

  2. Ellie,

    Your relaxed, pink little hands reveal contentment without the endotracheal tube. Grandma can't wait to get her hands on you:)

    Grandma Smith

  3. I thought of Ellie on our backpack trip this weekend. When we got to our campsite it was much colder and damper than we were expecting. In fact, our fire starter logs wouldn't even work. On our last fire starter a bit of wind stirred the last little flickering of a flame and all of a sudden it occurred to us we needed to blow on the flame if we had any chance of producing an adequate fire. So we kept blowing and blowing, adding a little moss to spark some more flame, blowing and blowing until it was just big enough to catch fire on the slightly larger twigs. On top of all this effort, every time we added slightly larger and larger sticks, the flame would dissipate and we had to start blowing on the fire again and rearranging the sticks. But with each phase of adding progressively larger sticks, the flame would dissipate less and less and we didn't have to spend every second maintaining it. Finally we added large slow burning logs and at this point the fire hardly needed any assistance and we could relax and breathe normally. Usually it takes just a few minutes to start a fire, but this took hours and hours, although it was worth the effort. I couldn't help but think of the symbolism to your journey with Ellie. With every few steps forward there is a step back, but the set backs becomes smaller and smaller until you can breathe again and Ellie's fire can burn on it's own.