We were up early Sunday morning. We had to meet with one of the attending physicians to review and sign the disclosure and consent documents. This is where they tell you everything that could potentially go wrong and you consent to the surgery. We were supposed to have had this meeting on Saturday evening, but we were both so tired and just couldn’t wait any longer and walked to our room and crashed.

I don’t remember how long after having that meeting it was until we were able to see our baby and eventually walk with her cardiologist to the big white doors that lead to the operating rooms.

Oh, how I would come to dread the sight of those doors.

My wife was in bad shape that morning. She was not feeling well, exhausted, and still recovering from giving birth. Remember, my wife and I aren’t a young couple. She wasn’t going to bounce back like she could have if she were in her 20s.

I remember standing in front of the white doors. For some reason, it was rather dark. We kissed our sedated, sleeping child, just over a day old, and then the doctor took her through those large white doors.

Now we wait.

The surgeon accessed her aorta through her back, cutting near/below her left armpit. They removed the narrowed section of her aorta and replaced it with a vein taken from her left arm. Consequently, her files tell medical personnel not to use her left arm to measure blood pressure. They won’t get an accurate reading!

The surgery was a success! I remember briefly talking to the surgeon, still in his scrubs, and asking about the left ventricle. He seemed confident that it was going to be big enough that we wouldn’t need to go the single ventricle route.

This was exactly what we had fasted for!

Our daughter seemed to be recovering well, so I decided to drive our car home (I think it was about an hour’s drive) and stay the night. Our two-year-old son had been without a parent for two nights and that’s about as long as we wanted him to go without one of us there.

The next morning I walked to the train station and grabbed a train to Ealing Broadway, which is also the first stop on The District (or green) line of the London Underground. From there I could walk across the platform and board a subway train (which is above ground at this stop).

While on the train to Ealing Broadway, I got the following text from my wife:

09:50:07
Just to warn you--hit our first bump in the road. Did an echo and the right side of the heart is now not working well. Lots of stuff and people. Trying to stabilize.

Fifteen minutes later I got off the train and walked across the platform to a waiting subway train. As mentioned earlier, since this was the first stop on the line, the subway train was above ground.

Shortly after the train doors closed and the train started moving I received this text:

10:14:02
11 people at her bed. I had to leave. Too much to watch. 🙁

I shot off a quick text and then the subway train went underground and for the next 30 minutes I was out of touch with no cell service.

That was a long 30 minutes.

My mind of course went to worse-case scenarios and I wondered if our daughter had passed away and if my wife was there dealing with that all by herself. It took literally every ounce of willpower I had not to break down and sob.

I remember looking around at the people in that subway car. They were engaged in conversation, or reading a newspaper, or staring at their phones. It was poignant to me that none of them were aware of my situation. None of them knew my newborn daughter was struggling in a hospital. Everyone there was blissfully unaware of the emotional storm I was so desperately trying to contain.

So I did the only thing I could think of. I prayed. And that got me through those painful 30 minutes.

I am embarrassed to admit that it was only a few years ago that I realized something important about that subway experience. For the longest time, I had made that experience all about me and how the folks on that train were unaware of my struggle, of the burden I was carrying. But here’s the thing, I was equally unaware of any burdens they were carrying. I was blissfully unaware of their struggles.

So maybe we can all be more kind to one another. Who isn’t struggling with something? Who isn’t carrying a heavy load? This is a lesson I keep having to learn.

Thankfully, the medical team was able to stabilize our daughter. They were able to catch her in the early stages of pulmonary hypertension and treat it. But this told us that other things were going on. It turned out that our daughter’s aortic transverse arch (the aorta comes out of the heart and forms a horseshoe; this is called the transverse arch) was not formed properly. It was narrower than they initially suspected and it wasn’t a smooth arch, it had a bit of an inverted “V” shape to it (see the last picture below). This meant that blood couldn’t flow as easily through it, which increased the pressures in the heart, which in turn led to pulmonary hypertension.

It was the concern over her malformed aortic arch that would keep our little girl in the hospital for 30 days. Her cardiologist felt that another surgery, this time open heart through the chest, would be needed to fix the arch. But our daughter kept improving, much to his bewilderment (he was expecting a decline). We suspect her body was growing collateral arteries to take some pressure off the aortic arch.

Our daughter couldn’t cry or swallow. We weren’t sure if this was due to damage from intubation or nerve damage (the nerves that control swallowing wrap around the aorta, so surgery on the aorta can cause nerve damage that is slow to heal/regrow). In pictures, you will see the nasogastric (NG) tube used to feed her. She was gaining weight and looked great! One weekend while her cardiologist was away, his staff discharged us and after 30 days, we went home!

My work during this time was incredible. I was basically told to take as much time as I needed while in the hospital and that I’d better not be answering emails or taking calls. This was such a huge blessing to our family.

For the next six or seven weeks at home we would feed and administer medications to our baby girl through the NG tube every three hours. It was a tedious process. We first had to prepare the breast milk, then draw some fluid from her stomach and test the acidity levels to make sure the tube was still going into her stomach and she hadn’t accidentally coughed it up and inhaled it into a lung, then we used distilled water to flush the tube clean, then we’d administer any required meds, then we’d connect the largest syringe we had to the NG tube and put the breast milk into the syringe and hold it up and let gravity push it through the tube into her stomach, then we flushed the tube clean with more distilled water, and then we cleaned everything up. If you were fast you could do this in 45 minutes. Usually, it was closer to an hour.

Did I mention we did this every three hours, round the clock, for almost two months?

My wife and I split the shifts so we would each get one 6-hour block of sleep. I often felt like a zombie.

We knew that our little girl’s aortic arch was a ticking time bomb. Another surgery was inevitable. We didn’t want to go through this again so far from home and our support network of family and friends, so my employer sent us back to the US (Utah) much earlier than was originally planned and made sure I had a job to come back to. Again, they didn’t have to do this. I work with good people.

Oh, and tithing works, my friends. Tithing works.

Two weeks before our move back to the US (about 6 months post-surgery), I got a call from my US manager (the same one I reported to before my move to England). He was being moved to a new business unit and one of my colleagues was being promoted to Director and would be my new boss. This felt like a punch to the gut. I had purposefully taken an international assignment to make myself more Director material, and yet when the opportunity came, my name wasn’t even discussed.

Ouch.

I didn’t know it at the time but being passed on a Director-level position was another HUGE blessing.

That will become more clear in Part Three.