#TeamAbigail: Dramatic Exit from ECMO

For five long days, Abigail remained hooked up to the ECMO machine. On the third day, they added a dialysis machine in order to relieve the 33% weight gain due to fluid buildup that is characteristic of babies on ECMO.

While her numbers had improved steadily, ECMO carries inherent risks that are unending. In the words of a perfusionist:

Every day you are on ECMO, it’s an opportunity for things to go terribly wrong. Every time that pump cycles, that is an opportunity for something to break. It is an opportunity for a blood clot. It is an opportunity for infection. It is an opportunity for internal bleeding.

That was the reality for five days.

Every morning, I showed up at 8AM, as the docs made their rounds. The entire team taking care of Abigail–neonatologists, critical care docs, pharmacists, nurses, residents, and medical school students–would spell out their strategy for the day for Abigail. They would begin with a recap of the situation, they’d list out the vitals, they’d list all the medications–including exact dosages–she was on, they’d list all nutrition, all the most recent test results, anything of note from the nurses. Some of it was for the purpose of teaching the students and residents, some of this was due to the complexity of these ICU situations: it really did take a team effort.

The plan was to keep Abigail on ECMO for 7 days. I wanted her off sooner, as I wanted ECMO-related risks off the table. I figured that, if other complications are subsiding and her numbers are otherwise good, why keep her on ECMO any longer than necessary? I didn’t bother the docs about it, though: I figured they knew what they were doing. That’s why they are the docs and I’m a lowly IT professional rooting for my baby girl to kick ECMO’s ass.

On the fourth day, I noticed some external bleeding where the cannula line entered her neck. It seemed more than you would expect. I asked the nurse on duty about it, and she said it was no big deal. But she was a trainee. So I asked one of the docs.

The doc said that some external bleeding is normal, but this was more than usual. They gave her an extra stitch, and dressed it better. For most of day five, it didn’t seem like a problem, given that Abigail’s numbers otherwise looked good. But that external bleeding was increasing, and that just didn’t seem right.

The lead critical care doc decided that this was more than usual, but said it didn’t seem emergent. Still, she said it was worth keeping a lookout.

Then, at around 7:45, her blood pressure dropped like a paratrooper having a very bad day.

She was losing too much blood. You don’t have to be a doc to put two and two together on that one.

The doc said that they’d get a team in right away to check that out. She also decided to give Abigail some more blood. She told me to go for a run. “It’s not emergent.” Looking back, I’m thinking she just wanted to get me out of there. She liked both MrsLarijani and me, but she probably didn’t want both of us around at the same time for what was coming down. And she knew I had my gym bag with me.

So I went to the stairwell and started running stairs. I wore my phone just in case anything changed.

About 20 minutes into my run, my phone started going off.

It was MrsLarijani.

“You need to get back here now. They’re shutting down the PICU. They’re taking her off ECMO. They’ll tell you why when you get here.”

As I ran back to the PICU, I was optimistic and nervous at the same time. On one hand, she’s coming off ECMO. I WANTED that. But if they’d planned on keeping her on ECMO for 2 more days and now they’re abruptly pulling her off, then the defecation has crashed into circulation at a high velocity.

When I got there, the doc was waiting, with two computer monitors showing two different X-rays.

The one on the left showed the cannula line position when Abigail was initially put on ECMO. The one on the right showed a cannula line that had clearly shifted. That was the cause of the bleeding.

And they couldn’t simply re-insert the cannula without risking infection. So the decision was made to pull the ejection handle on ECMO.

—–

And so we were shuttled out of the room in PICU–the surgery was happening right there–and into the consult room. I locked the room so I could change out of my sweaty clothes, and a doc came in, twice, while I was in the middle of changing in order to brief us. (It was comic relief: every time she knocked, I had to quickly throw my sweats on. It provided a couple of light moments on what was a very stressful time.)

MrsLarijani was extremely worried. So was I. Yeah, I wanted Abigail off ECMO, and–for better or worse–I was getting what I wanted. The issue was whether she was ready to come off ECMO. Personally, I was cautiously optimistic. My pucker factor was a 5.

MrsLarijani, however, had been through the ringer. From the news of the birth the previous Saturday, to nearly a week on last-ditch life support, and now emergency surgery, she was worried that we were being punished for something.

I must admit, her concerns had rational basis. I mean goodness…NOTHING had been normal about this. At every turn, our attempt to have children, first by conception, then by adoption, had run into major roadblocks. And now, after being picked, we had to hurry up and wait for a month, and now we are facing the possibility that Abigail might not come home with us.

While I said we would pray about that angle, I also brought up the dynamic of deliverance that God provided the Israelites. At so many times, even when they had re-assurance, things sometimes got worse: Pharoah cracked down harder, they had an army chasing them, they spent long times in the wilderness wondering where their next meal would come from. At every turn, God effectively said, “Hold my beer and watch this.”

But yes, we prayed for deliverance for Abigail. We prayed as hard as we ever have as a couple.

Because the situation had become emergent, the NICU folks put us in a room that had a bunk bed. This saved us from having to go back to the Ronald McDonald House.

Once we got into the room, I crashed out and managed to get some good, quality sleep.

At about 1AM, we had a knock on our door. The surgeon said, “Abigail is now off ECMO, and she is doing excellent.” In my daze, I gave him a thumbs-up and said thank you.

Abigail was off ECMO.

She’d just spent her first week on this earth establishing her badass bona fides.

That’s my girl!

#TeamAbigail, Part 4: The Stockdale Paradox

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.

#TeamAbigail, Part 3: The Stork Crash-Lands

I always found the analogy of the stork, in child delivery, to be amusing. Perhaps it was my childhood enjoyment of cartoons like this one.

But, using that analogy, at about 9:00 PM on Saturday, February 11, Catholic Charities gave us both good news and bad news:

Good news: Abigail was born at about 11AM.

Bad news: The stork crash-landed.

In plain terms, Abigail was in “respiratory distress” and was in the Neonatal Intensive Care Unit (NICU) at Kentucky Children’s Hospital, which is part of University of Kentucky.

As an asthmatic, I know what “respiratory distress” is. I felt like I spent half my childhood in ER, with asthma issues. It is what got me bounced from Army ROTC during my college days. I had to go to great lengths to prove it was a non-issue during my attempt to enlist in the Army post-9/11. (Ultimately, my back problem did me in.) Even today, I use an inhaler prior to my open-water swims.

“Respiratory distress” sucks, but it’s far from the end of the world.

It did not bother me a bit that she was in the NICU; a friend of ours from our church was a nurse in the NICU there. The NICU folks at UK are very solid. I was barely fazed by the news.

At this point, we were elated: our baby was born.

But because this was a closed adoption, we still were not allowed to see her for at least 48 hours. We had to wait for the birth mother to be discharged.

We would spend all day Sunday getting the house ready for our departure. On Monday, my plan was simple: get a workout in the morning, get some last-minute things situated at the office, then pick up MrsLarijani and head to the hospital.

Surely to goodness, by that time, the birth mother will be gone and we will be allowed to see her!

#TeamAbigail, Part 2: The Runup to D-Day

When we received the news that we had been picked, it was January 13.

The expected due date was given as February 8. However, that was a rough estimate, given that it was from an ultrasound in ER early in the pregnancy. According to the folks at Catholic Charities, delivery could happen at any time, and they would not be surprised if it was sooner rather than later.

In other words, we were on standby. While the expected due date was almost a month away, we could not just assume anything.

So we went into preparation mode.

On the bright side, we had most of what we needed already: because we were waiting on the state to approve us to be foster parents, our house was “home study” ready. We had a crib, we had a bassinette, we had a diaper bag, we had some baby swings. We had a rocking chair. MrsLarijani went out and bought some outfits. We went to Costco and bought some diapers and baby wipes. After making a quick registry, someone bought us a car seat/stroller combo.

In order to be prepared, we loaded some changes of clothes for ourselves, complete with a stocked diaper bag, as well as the car seat, into the trunk. We wanted to be ready when we got the call.

We also had a dilemma: we needed to pick a name for our baby.

Did I mention? Catholic Charities told us, “it’s a girl”.

We knew what we wanted for a boy’s name–Samuel Amir–but we had not arrived at a decision on a girl’s name. We had contemplated it often, but had not arrived at a name that we each liked.

We wanted a Biblical name, but not Jezebel or Athaliah or Herodias.

I thought about my favorite women in the Bible–Deborah and Jael. Jael was a badass: anyone who drives a tent peg through a bad guy’s head is worthy of consideration in my book. And Deborah was both brave and wise.

But those didn’t go well with my last name.

And while I like Elizabeth, MrsLarijani vetoed that one. Besides, that one, like Mary, is way too common.

We also wanted a Persian middle name, and finding one for a girl–that had a Christian theme–was proving elusive.

We both settled on Abigail Hamadeh Marie. Hamadeh means “one who praises”. Marie is MrsLarijani’s middle name.

We also thought through the logistics of MrsLarijani taking maternity leave, then going back part time. We did the math on that, and figured it would provide no benefit for her to go back part-time.

We decided that MrsLarijani was going to be a SAHM. Due to the inflation–that doesn’t officially exist–and due to my not getting my promised pay raises, the margin was thinner than I wanted, but we figured it was doable.

But after the news, we waited. We knew we could get the call at any time. We also knew that the expected due date was weeks away. We had no idea how accurate that estimate was. In the back of my mind, I knew that ANYTHING could go wrong. A lady in our church lost her baby weeks before delivery. Died in the womb.

Better people than us have gone through that fire. I see no indication that we are less-deserving of such things than anyone else. And while God performs miracles and even protects people from evil, we also know that, for reasons we don’t fully grasp, bad things happen to good people.

This is why I prayed to God: “let her be born healthy, let the adoption process go smoothly.” There are many things that can go wrong in an adoption. Even if the baby is perfectly healthy. Even after you’ve taken your baby home. And in rare cases, even after the adoption is finalized.

I knew of the risks. I knew enough adoptive parents, and I was aware of the legal issues that can go south. Sadly, this is why many couples adopt internationally: while that carries a lot of red tape, not to mention travel expenses, once the child comes home, the chances of a birth parent flying in and suing to get the child back are close to zero.

And so we prayed.

And waited.

And prayed.

And waited.

Being cynical, I figured we would get the call at the least convenient time, if not after the expected due date.

Meanwhile, at work, I had some tight deadlines: due to a third party sitting on an RFP (Request For Purchase) for 6 months, we had until mid-March to finish a major implementation. And I was responsible for ensuring that our critical systems interfaced with the new product via the API (Application Programming Interface).

As February 8 drew nearer, the anticipation–and stress–rose. We were sort of expecting some kind of news during the week of the 8th.

But, true to form, my cynicism proved reliable: February 8 came and went: no news.

Saturday, February 11 was a tough day for MrsLarijani.

While she had been, consistently, the best salesperson at the store, the new general manager had been, for lack of better words, chilly at best toward MrsLarijani. She had aligned herself with some of the younger gals in the store, and had been extremely critical of MrsLarijani. It didn’t matter that MrsLarijani was the most punctual, reliable, and highest-performing salesperson on the floor: the GM simply didn’t like her. That tension had been boiling for months, ever since the old GM–who was very good–was transferred.

But that Saturday, things had come to a head: over a very minor issue, the GM “wrote up” MrsLarjani. That was her first “write-up” in her four years at this place. And MrsLarijani was rightfully pissed.

She wanted to put in her notice and, in so many words, tell them to go pound sand. I told her to go to war and fight it. She had the recourse to go over the GM’s head, and MrsLarijani was well-regarded by the higher-ups. We worked out a game plan to pursue that route.

Then, at about 9PM, as I was taking out the trash and swapping out the cat litter, MrsLarijani received a phone call from a number out of Lexington.

It was Catholic Charities.

#TeamAbigail, Part 1, Introduction: “Our Wait is Over!!!”

On December 5, 2009, MrsLarijani and I got married. From that time, we began attempting to procreate. The effort was enjoyable.

But no bueno: for all our efforts, we were unable to conceive. Ultimately, we decided to check to see what our fertility issues were.

As it turns out, I’m shooting blanks.

I was not surprised. Due to issues related to my premature birth, I had long known that this could be a possibility. MrsLarijani knew of that possibility when we got married.

Due to both my age and the complications and uncertainty of the available procedures, MrsLarijani and I decided, early on, to pursue adoption.

In July 2014, we finished our paperwork and background checks, and entered the pipeline for Catholic Charities. The average wait time is three years.

Being of the cynical persuasion, I expected a wait of at least four years.

In those years, we have had serious challenges: I found out that the homebuilder had improperly installed my roof, and had to replace all the shingles. MrsLarijani’s grandmother died; her step-grandfather died; her brother died.

Making matters worse, everyone in our Catholic Charities cohort–who went through the classes with us–received “placements” early on. We were the only ones waiting.

First one year.

Then two years.

In mid-January, we received an e-mail from Catholic Charities about a “special situation”. These are cases were there are atypical circumstances. We almost always put in for those, as we have cast a wide net.

We were also about a week away from being approved to be foster parents in the state system.

MrsLarijani and I decided to go “YES” on the special case. MrsLarijani worked frantically to get all of our paperwork updated so we could be eligible, as the birth mother was going to make her decision on Friday, January 13.

When MrsLarjani arrived at Catholic Charities, she handed in the paperwork. She saw a stack of profiles: at least 30 of them, going from the floor to the top of the desk. Those were the other couples who put in for this case.

We figured this would go as the rest of them had: someone else would get picked. I fully expected it.’

Then, at about 1:00 in the afternoon, MrsLarijani called me. Usually, when she calls at that time, it’s bad news.

She was crying. She said something unintelligible. I thought she had just gotten written up by her boss, who had been a jerk.

Me: “Honey, you’re going to have to calm down. I cannot understand anything you are saying.”

MrsLarijani: “OUR WAIT IS OVER!!!”

Me: “We got picked?”

MrsLarijani: “YES!!”

We had a phone conference with Catholic Charities, to get our approval. I wanted to be there with MrsLarijani.

In spite of my bad knee, I ran out to the car and drove to her place of employment. She was sobbing–there were customers on the floor, but I swear if her boss had chewed her for that I would have told her where to stick her reprimand–but I ran up and embraced her.

In the phone conference, Catholic Charities explained some of the particulars: among other things, expected due date was February 8.

Because of some of the particulars, I was not ready to celebrate just yet. D-Day was about a month away, and a lot of things can happen in that time. I have had enough times in life where something appeared to be certain, only to have hopes dashed in the last minute.

Looking at that, I totally get why Zecharias initially doubted when Gabriel told him that, in his old age, he and his wife would conceive and have a child who would pave the way for Jesus.

Average wait time is three years; we got picked in two-and-a-half.

There was considerable rejoicing, but my celebration was muted.

Now, I was praying, “Let the baby be born healthy, and let this process be orderly.”

One wait ended, but now, we’re on standby for the next four weeks.