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Thursday, March 01, 2012


This week has had some difficult moments.

On Monday, I met with the parents of baby J. He was born two weeks prior and came to us with jaundice and cataracts, and we later diagnosed severe hearing loss. His liver, eyes, brain, and lungs were damaged by a viral infection (CMV= cytomegalovirus) his mother contracted probably early in pregnancy. A negligible disease unless you are an unborn baby or immune compromised, and then it can be catastrophic. Baby J seemed to rebound early in his second week of life, and for a couple of days I hoped he'd just be a hearing-impaired but possibly relatively normal kid post-cataract surgery some day. But then he developed progressive respiratory distress. By Thursday night last week he was teetering on the brink of death, and was rescued by the ICU. I kept him all weekend on the ventilator, once doing CPR for a couple of minutes when his heart was faltering down to zero, once re-intubating him, and often adjusting and evaluating. We had started a new antiviral medication and hoped that 24 to 48 hours would make a difference. By Monday I could not see much improvement, and had already turned away another child who needed an ICU admission because we had no beds. So I had a long, gut-twisting, heart-wrenching conference with baby J's parents. I told them that I thought we were not helping him, and were possibly causing him more pain and more problems with this tube that was in his airway, for no real benefit, and I wanted to bring up the possibility of taking him off the breathing machine. In a country with extremely limited resources, this is a conversation we sometimes have to have.
I wanted to give them a day to adjust and think and pray. But an hour or so later they called me in to say they were ready. They stood by his incubator and put their hands on him and said goodbye. They cried. I cried.
I pulled out the breathing tube and suctioned and put him on nasal CPAP, a less invasive delivery of oxygen and air under pressure through the nose. I didn't know if he would even try to breathe. But he did. Fairly well. After an hour it was clear that he was going to fight on. He was actively moving, whimpering a bit, and pulling hard but keeping his blood oxygenated. I was cautious but slightly optimistic again. We moved him down to the nursery.
Tuesday morning I was nervous walking in, but there he was, yellow skin and bruised IV sites, fluttering eyelids, breathing away. Not great, but alive.

I still didn't think his long term prognosis was very hopeful, I'd seen him too close to the edge too many times. But these parents really got to my heart. I think English-speaking parents, without the barrier of translation, are more difficult to protect one's heart from. This mom was so completely dedicated, attentive, anxious, invested. And the dad was amazing. So caring. He came in his suit from work, and listened, and put his arms around her. I was really pulling for them.

Tuesday afternoon, I was teaching a group of a half-dozen nursing students how to resuscitate a newborn using the materials (model baby) we got at our conference. They were taking turns, putting breaths into the baby with the bag and mask. When I noticed the nurse carrying a REAL baby to the other resuscitation table, and Bob walking towards them. I left my students to check what was happening. It was baby J, with no pulse, no breathing, milk spilling out over his face. The nurse had been moving him from one bed to another, after a feeding through his nasal-gastric tube, and he vomited. He had absolutely no reserve. All those periods of marginal oxygen, all that infection in his brain, it was the final straw. So I moved from pretend CPR to the real deal, for about ten minutes we tried to revive him, with no success.

His parents came in at the very end. When they realized what had happened, they broke down. We got them into chair in a side room, where we talked and comforted and prayed again. They held his body. They said thank you. I said what I could, probably not very profound, but I hope they knew I cared.

And from there, I walked out to cook a birthday dinner.

Which brings us to the title topic, anchors. Sometimes I can't bring myself to think of another meal to prepare. Keeping the house stocked with limited time and resources, keeping kids fed, keeping laundry moving. All that lillies-of-the-field stuff we aren't supposed to worry about feels like a challenge. But this week as I took a couple of hours in the middle of a long weekend of call to make funnel cakes and play UNO with my "caring community" of 10th graders, or spent hours on Caleb's birthday cake, I realized these concrete wholesome tasks are anchors.
Stirring and kneading, measuring and washing, sorting and straightening. These daily solid tasks of life hold me. When I think about another dying infant, or the sadness of the parents, or the vast things I can't do and don't know how to help, I can despair. So I'm thankful for the necessity that anchors me to earth, that gives me a wholesome alternative to the world of the hospital. As much as I stress over coming up with another dinner, that incarnate reality steadies me
God put our souls into these bodies for many reasons. One is sanity.

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