Our Little Engine that Could

“I’m not very big. I have never been over the mountain. But I think I can. I think I can. I think I can.” And the Little Blue Engine hitched herself to the train. She tugged and pulled and pulled and tugged and slowly, slowly, slowly they started off. Puff, puff, chug, chug, went the Little Blue Engine. “I think I can – I think I can – I think I can – I think I can.” Up, up, up. Faster and faster the little engine climbed, until at last they reached the top of the mountain…And the Little Blue Engine smiled and seemed to say as she puffed steadily down the mountain, “I thought I could. I thought I could. I thought I could.” – The Little Engine that Could

I brought Eliza out of her bassinet this morning to snuggle beside me under the warmth of my covers before getting up to greet our day. It was going to be a big day. As we lay there together, I told her about the swallow study, the hospital, the chair where she would sit and feed. I told her I was so proud of her no matter what. And as I spoke, she looked up at me with big eyes and a sweet grin…my precious little engine.

By the time we arrived at the hospital, my stomach was in knots, and we sat together in the waiting room holding hands as I repeated silent prayers. I wanted so badly to know that she was safe and that we could keep up our work, so I was relieved beyond words when we left with official clearance to continue oral feeds! While she again aspirated on thin liquids and was sent home with orders not to introduce them, there was a real fear that they would prohibit her from being able to feed orally at all. As of now, we mix the milk to a nectar thickness and use a Level 2 Dr. Brown’s nipple, but even getting to try that was an uphill battle. It was tough to get here, and our journey was filled with lots of tears and lots of persistence. But we kept chugging along. We may not have reached the top of the mountain just yet, but I feel the momentum bringing us closer each day. And I feel all the friends and family and helpers cheering us on along the way. It’s incredible! In this moment I am light and happy and so, so grateful!

Every day Eliza amazes me. Every single day! She may not be able to hold her head up or get through all of her feeds without fatiguing, but she is the strongest person I have ever met. Strength is funny that way. And she is so gentle, so patient, so forgiving. She endures nightly growth hormone shots with a smile on her face as soon as the needle is out, and her concentration and determination during physical and occupational therapy astound me. Derrick and I joked just last week that we want to be like her when we grow up.

The Little Blue Engine may have brought dolls and toys to the children in the city, but Eliza brings gifts even more precious…gifts of perseverance.  Gifts of love.

Advertisements

It is good

“Give thanks in all circumstances; for this is God’s will for you in Christ Jesus” – 1 Thessalonians 5:18

Our pastor came to speak to my women’s group for a devotion earlier this year and shared a story that has stuck with me ever since about a king and his advisor. The king lost his thumb on a hunting trip only to be met with the standard reply by his advisor that “it is good,” a sentiment the advisor shared in every occurrence of life regardless of circumstance. Furious by the response, the king put the advisor in jail, to which the advisor again replied “it is good.” Later, the king went hunting again by himself. This time, he was captured by a group of savages intent on using the king as a sacrifice. Upon noticing the missing thumb, they released him based on the superstition that he was not whole and therefore not a sufficient sacrifice. The king went immediately to the prison where he apologized to his friend and advisor. He agreed that his injury had indeed been good since it spared his life, but he wondered how the advisor could have declared his imprisonment good as well. After all, he had been right in his initial response to the injury but was sent to jail anyways. To this, the advisor replied, “it is good because if I wasn’t in jail I would have been hunting with you and they would have killed me.”

There are several variations of this Taoist tale, but the moral is always the same and is echoed throughout the Bible: in all things, give thanks. It’s a hard lesson at times. I realized this summer that grateful praise, much like love, is not a feeling. It is an action, a decision. I vividly remember standing in the shower of my boarding bathroom between NICU feeds, singing thanks and praise to God as tears of fatigue and sadness and confusion ran down my cheeks. Sometimes, praise happens that way…the hard way.

When Eliza got put on oxygen unexpectedly and then weeks later got readmitted to the NICU for the placement of an NG feeding tube, I did not feel like giving thanks. I felt overwhelmed and so frustrated by all the steps we seemed to be taking backwards. Then about a week ago, Eliza spiked a fever of 104. For three scary and exhausting days, she did almost nothing but sleep. We went to the doctor twice but were spared from another NICU admission because of the interventions we already had at home. The supplemental oxygen gave her body a boost as it worked so hard to clear the infection, and the tube allowed her to take almost all of her feeds while still sleeping. Not only did it keep her from becoming dehydrated and needing an IV that could only be placed in the hospital, it kept her right on track for calories and weight gain. Suddenly, the interventions I had cried over were welcome gifts…members of “Team Eliza” and her road to recovery.

We started antibiotics that Sunday evening to treat what we can only guess was a pneumonia aspiration. I realize that sounds terrifying (and is), but she bounced back quickly after that and has been great ever since. I don’t know what that will mean for the next big swallow study on the 13th, but for now, I’m trying my best to enjoy the present and, more importantly, to trust that no matter what it brings (and what anything brings for that matter), it will be good.  Because so far, it really is so good.