On the morning of February 13, I was upbeat.
Our baby had been born not even 48 hours before.
While she was in NICU, I saw no indication–based on what we were told–that this would be too big of a deal. I figured, at worst, we might be in Lexington for a few days, but we would likely be able to take Abigail home within the week or early next week.
That morning, I got in a very good workout: strength work, and a good hour on the stair-stepper. I went to the office, took care of some business, and then headed back to the house. I had some lunch with MrsLarijani.
She received a followup call from Catholic Charities. We were told to show up in the hospital lobby at 3:00, and they would take us up to the NICU where we would be able to see Abigail.
The news, however, was more sober: her initial condition–respiratory distress–had deteriorated.
“Acute Respiratory Failure”.
There was also concern for her heart, as her heart rate was low.
My pucker factor rose to about 5.
Respiratory distress is one thing; respiratory failure is a Big Freakin’ Deal.
When we got there, we met N, from Catholic Charities. Normally, N was upbeat. She had a much more serious look on her face.
This was bad.
By the time they got us processed at UK, it was after 4. And the NICU was closed: they always close between 4PM and 5PM. But N was able to pull some strings to get us back there so we could see Abigail and meet with the docs.
When we got back there and saw Abigail for the first time, I noticed two things:
(1) She was not biracial (we had expected her to be biracial, based on the info we were provided beforehand). Other than the bluish color from her medical condition, she was white as a cotton ball.
(2) She was in very bad shape. She was clearly in respiratory failure. She was blue. Her vitals were bad: oxyenation was in the low 80s. The doc (AJ) told us that they would likely have to put her on the ECMO machine. We asked, point blank, what her condition was. The answer was equally point-blank: “very critical”.
I didn’t know what ECMO was, but I made a mental note to Google that at the earliest opportunity.
After that quick briefing, we were quickly taken to the consult room. N was also in shock; in retrospect, she wasn’t even sure how bad this was, but she knew it was bad.
She told us, “You do realize that you are under no obligation.”
Our response was pretty much the same: “That is our baby.”
We also realized that this was not going to be a quick stay. At that point, I knew we would be at the hospital for at least a month. If she made it past this.
N was able to refer us to the Ronald McDonald House, which had an available room. We would not be able to see Abigail until at last 9PM, as they were going to put her on ECMO. So we took that time to go to the Ronald McDonald House, get checked in, unload our stuff, get a quick bite to eat, and go back to the hospital when we get the word.
From the dining room of the Ronald McDonald House, I Googled ECMO. It confirmed what I thought: this is last-ditch life support. ECMO is an acronym for ExtraCorporeal Membrane Oxygenation. In the non-medical world, it is the “heart-lung machine”. It pumps the blood out of your body, removes the CO2, oxygenates the blood, and pumps it back in.
ECMO will not cure you; it gives the body a chance to heal by de-stressing the respiratory system.
But ECMO is the last stand.
Pucker factor went up to about 7.
At about 8PM, we received word that Abigail had been successfully put on ECMO, and that her body was responding well.
We went back to the hospital to see her at 9PM. Abigail had been moved to the Pediatric Intensive Care Unit (PICU) due to her being on ECMO. There was a critical care nurse and a perfusionist (a technician who operates and monitors the ECMO machine) in the room.
One of the docs–who was in charge of the ECMO setup–came by, and I had a chat with him. Like me, his undergrad background was in engineering, only his was biomedical engineering. We started chatting it up about ECMO. While I am not a biomedical engineer, I have a passing interest in control systems. And ECMO is one hell of a control system.
After that chat, I said, “Let’s be honest here. We ARE talking life-support.”
At that point, he began to give the lowdown, most of which I had already read about:
- If you’re on ECMO, it’s pretty much the end of the line. If this doesn’t work, you’re not going home. (He didn’t say it in those words, but he didn’t candy-coat it either.)
- With ECMO, you have a problem with blood doing what it normally does: clot. And we all know that clots can kill you.
- Because of the clot risk, they have to use heparin (a blood thinner) to prevent clotting.
- Heparin carries its own risks, particularly internal bleeding. A brain bleed can be catastrophic.
- Because of all that plastic, you have the risk of infection. MRSA can kill.
- Because ECMO is mechanical, mechanical systems can fail. And while they do have redundancy available, any disruption can be fatal.
- With all the fluid going into her, she will bloat. Managing that will probably require dialysis.
The doc said, “We cannot guarantee anything here, although her body, at this point, is responding well.”
Thus began our tour of duty on ECMO.
In a different life, I am very good friends with a retired Marine Corps Colonel, who served as a “co-van” during the war in Vietnam. In that life, I have helped him tell his story in order to educate younger people in both the great sacrifices of our veterans in that war, as well as the dangers of giving blind trust in government.
In the course of that life, I have had the privilege of studying about great Soldiers, Sailors, Airmen, and Marines who served with extraordinary valor. My favorite is Col. John Ripley (USMC), who singlehandedly stopped the North Vietnamese Army by blowing up the bridge at Dong Ha. I also admire Rear Admiral Jeremiah Denton, a POW who used his eyes to spell “T O R T U R E” in Morse Code, destroying what was supposed to be an NVA photo op.
Another great favorite, however, is Vice Admiral James Stockdale, another POW–like Denton, a member of the “Alcatraz Gang”–who defied his North Vietnamese captors for more than seven years.
In his recollections of those days, Stockdale provided what we know today as the “Stockdale Paradox”:
This is a very important lesson. You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be.
In many Christian circles, people forget about the last part of that gem. Some get so caught up in the “faith” part of things that they never bother to consider the severity of the situation.
Many of them tend to think that, if they just have enough faith, they won’t have to deal with the brutal reality. I knew a flight instructor who was paralyzed in a car accident from the waist down. He was a Christian man, and faithful in his church, which was Pentecostal. He had a lot of faith, but he remained a paraplegic. Many of his peers told him that if he just had enough faith, that God would heal him. For many years, he felt his condition was due to his lack of faith.
I know an 8-letter word for that kind of thinking, which is rooted deeply in our agricultural heritage.
Almost immediately, on February 13, I began to steel myself about some of those “most brutal facts”. I’m a fairly laid-back patriarch, but now it was time to show up with the “man card.” I had a baby with a foot in the grave, a job that required my work–as the deadlines did not change when Abigail was born–and a wife who hadn’t quite connected the dots yet. It wouldn’t be until late the next day that she would put two and two together.
Abigail’s first Valentine’s Day. I got to hold her hand
Ten years before I took that picture, I was a single gun nut who spent way too much time on the blogosphere. My biggest dilemma was looking for a house. Marriage wasn’t even on the horizon. At 40, I had doubts about ever getting married.
Now, at 50, I’m 7 years into an otherwise happy marriage, with a house, two cats, a dog, and now–holding the hand of my baby daughter, who is clinging to life.
I knew that, at least mentally, I was going to have to think like an endurance athlete.
This will be a very long triathlon. And ECMO is the swim leg. And that swim is upstream.
And while I had no doubt about God’s capacity to heal, faith alone will not make me swim.
I had to exercise that faith as I swam.