When Life Demands Persistence

Nathaniel is back to baseline.

He was discharged from Pediatric Intensive Care Unit to home a week ago Thursday. We reduced respiratory support from every four hours, to every six hours, to every eight hours, to every twelve hours. On Tuesday, he no long needed oxygen when awake. By Thursday, he no longer needed oxygen when sleeping. Yesterday he was back to baseline. No oxygen requirement. No breathing treatments. No antibiotics. Little to no suctioning needed each day.

But he is far from back to normal. He lost two pounds in February. His arms seem thin when I help him dress. The jeans that were getting tight in January fit again.

He has little energy. The weather was beautiful this week and though we went outside, he would quickly seek a lap or chair to rest. His most playful day, when he plopped down on his tummy in the dirt and played with trucks, was bittersweet. I enjoyed watching him rest in the sunshine. I was constantly aware of the proximity of his trach stoma to the soil and bacteria it holds.

If recent history repeats itself, we have about two weeks of respiratory healthy Nathaniel. That was the time lapse between ending his antibiotic in November and the beginning of his December illness. It was the time between ending his antibiotic in January and the start of his February illness. Everyone sees the pattern. Smart physicians are consulting with other smart physicians. They are discussing why and what and when. I am thankful for Nathaniel's medical team. They hear and see well. They want better options for him and are faithful to keep on keeping on in pursuit of a healthier Nathaniel.

When my husband asked his father what he thought about our getting married, deterimination was what my father-in-law saw in me. His response, "Kim has a lot of stick-to-itiveness," was his blessing in disguise. Rich has same quality. Nathaniel needs determinedness from many people right now. Stick-to-itiveness to work again on the hand and arm strength to pull up his pants even though we crossed it off the occupational therapist's list. Stick-to-itiveness to start oral feeding... again. Stick-to-itiveness to relearn words on his device that went unpracticed for weeks. Living with this cycle of respiratory illness demands purposefulness and tenacity - a clear focus on what can and should be maintained and where to pick back up when strength returns. It is at this juncture when Nathaniel's therapy team is most valuable to us.

While his physicians and therapists step deeper into supporting Nathaniel's recovery, so do our friends. It is prudent to limit Nathaniel's exposure to viruses right now; we will pause hosting our weekly play group. But the mommas refuse to pause friendship. They respond to my texts faithfully. They enthusiastically embrace the idea of preschoolers using Face Time to smile, wave, exchange a few words through speech or device, and remind me that community and play dates can look different, but feel the same. A friend steps in to watch Nathaniel at night so we can sleep. She helps stock my freezer with meals. Another friend takes a phone call when her arms and heart are full of her own burdens. A couple considers stepping in and being us for a longer shift so we can enjoy our older children. Grandparents call, bring lunch, and sit in the middle of the hard days with us. Our older children come or stay home, bring in carry out, and cuddle close. Other people write emails full of encouragement. Many want to know our prayer requests.

And we need all of this. Because stick-to-itiveness can sometimes loses its stickiness. 

When we were anticipating Nathaniel's airway surgery, a friend shared Matt Hammitt's album Every Falling Tear. It is a compilation of songs written when Hammitt and his wife were expecting a baby with congenital heart problems. I played the album repeatedly going to and from the hospital last month. Each song spoke to my heart and encouraged my faith. Of a mother waiting for news from surgery, Hammitt sings, "People tell you to hold on tight. But what do you have to hold on to tonight? Where will you find peace when you cry?" And he proclaims, "It's not in what you hold onto, it's in the one who's holding you tonight." This is our chorus. As we wait and see what will happen with Nathaniel's respiatory health two weeks after this round of antibiotics, our trust is in God - the persistent one. The one who works through doctors, therapists, friends, and family to hold us.

Lest I'm tempted to forget
I'll tie Your love around my neck
I'll write Your words upon my heart
Lord, I won't forget how good You are

I'll dwell upon Your faithfulness
I'll rest within Your promises
And when I'm walking through the dark
Lord, I won't forget how good You are

I will trust, I will trust You
I will trust you, Lord, with all my heart
And I won't forget how good you are
No, I won't forget how good You are

Trust by Matt Hammitt