Home & Hospital 2002-2006

With Henry home, we also gained a lot of medical equipment including the “monster” – a stationary oxygen machine that was nearly the same size as Henry’s crib and emitted sounds similar to an industrial grade generator. But, between administering eight medicines daily and stomach tube feedings (aka g-tube), we did find a normal “new kid” routine. Henry napped with his brother on the couch, hid out in the baby sling for runs to the grocery store and endured his big sister fretting over his unruly, burgundy hair.

It took a while for the weeks of sedation Henry had to fully leave his system. For the two months he was in the hospital, he spent most of it in a drug-induced coma. But once it wore off, Henry became very alert. He would look around so comically, less than impressed by the lot of us. Henry had this way of looking at you that somehow sweetly said, “Don’t screw with me.”

We avoided some of the less pleasant aspects of having a newborn. Henry often slept through the night because that is when we ran the big g-tube feeding that pumped his belly full. Although when he woke, there was often colossal poop. He never had colic and save for the fact that he had a really awful heart, this kid was healthy. He rarely had a cold and just a few ear infections.

Henry was developmentally delayed. And he never crawled, which is considered an important milestone. But, given everything else we had to worry about, I let that one go. It just seemed that he lacked the muscle development to manage it. Instead Henry scooted on his butt for miles, leaving shredded diapers in his wake.

By the end of summer, we got to say goodbye to the monster and Henry fed himself entirely orally. He was a easy going kid, much like Gwyn. In the fall of that same year, we returned for the second of the Hypoplastic surgeries (the Norwood comes first , followed by the Glenn and Fontan. Sounds like a cheesy boy band). I dreaded taking him back there. At that time, I wrote:

Three weeks back in the ICU. Henry bombs extubation again and again. I find myself bonding with nurses and residents and avoiding friends.

Here are the things I didn’t know, didn’t care to know. A fungus can grow in your heart and it is almost always fatal. Post-operative staph infections can set in so fiercely that the burn unit has to be called in to tend to your child’s wounds. PICU nurses are stern and compassionate. They aren’t angels but they are merciful. Your child can have massive heart defects, a blood clotting disorder and there will never be an explanation for why. Some children die alone, some die in unbearable pain and some children walk out of the PICU with smiles and stickers and are never seen there again.

Henry’s surgery went well but he had the same complications – getting off the ventilator and staph infections. I became a Nazi about people washing their hands when they came in Henry’s room because he was so damn talented at picking up infections. In the end, we stayed only three weeks that time but, post-surgery, his O2 saturation rates improved only slightly. The doctors began warning us that Henry’s valves were weakening. I could not worry about that – I was still obsessed with compensating for the missing ventricle.

I also worried about other things. Like I needed to stay in school and work as a graduate assistant. I refused to give up on my PhD for two reasons. First, I knew I needed the earning power the degree could bring to the family (and, let me tell you, we are so filthy rich now that I can often buy groceries and pay the electric bill in the same week). But, I also refused to quit. There was a part of me that was in denial that things were so bad. I so badly didn’t want to wallow that I did everything I could to keep up the family status quo – three kids, two working parents with just the minor detail that one kid kept needing heart surgery.

Of course, the bottom fell out of this plan. Ned was laid off from his store director position after giving them years of service and opening several branches. He was never given an exact reason why he was being let go but I felt certain that when the company saw Henry’s medical bills coming in (I think his first hospital stay cost insurance $240k), they reconsidered how valuable of an employee Ned was. Am I bitter? You bet.

Ned was not a stellar stay-at-home dad. Of course, I had never been great on that front, either. But so much of Ned’s identity, like a lot of men, was tied up in being a provider. It took him several months to find a new job and when he did, the work hours were even worse. I began to realize Ned and I were often at odds with one another. We got along great as friends but living together was a whole other dynamic. My marriage was derailing and I didn’t have the energy or, sadly, the interest to do much to stop it.

One bright spot in that first year was supposed to be Henry’s birthday. We planned a blow-out bash at our house and invited dozens of friends. Then, that morning, I woke up with vertigo, which I have never had. Vertigo is like the world’s worst hangover, coated in nausea. I couldn’t function and eventually had to go to the ER. Ned and our mothers pulled off the party without me there for most of it (as I refused, while dry heaving, to cancel the party). Henry appropriately smeared birthday cake over his slightly blue face and the other kids massacred some piñatas. I sat on the porch, clenching a lawn chair, with my head between my knees.

I try to write my children letters for each of their birthdays. Let’s do the math. I have three kids who are twelve, ten and seven. I have written eight birthday letters, total. Yes, I suck that much. Henry’s first birthday card was a postcard with a baby gorilla on it. I wrote:

Happy 1st birthday beloved Henry!

This postcard reminds me of you when you were first born – lots and lots of black hair. Thank God, I thought, one that finally looks like me! Of course, your dad’s genes have taken over and now you are a flaming red head. I adore you – you are the best thing that ever happened to me. I grew up tenfold in the first dramatic year of your life. You have been through hell and come further than any of us expected. You are the riches I never imagined in my future, the perfect gift I hardly feel deserving of.

I love you, Mom.

We had Henry at home for two, rather uneventful years, knowing that before his fourth birthday he would have the third of his staged surgeries. I enrolled him in a preschool for children with developmental delays, took a new job, tried to finish up my PhD coursework. When it came time for the next surgery, we were hopeful. All we had to do, we told ourselves, was get through this last slated surgery and we would pretty much be home free. Because this was the choice we had made. When Henry was just days old, Dr. Ward took us aside and said we could go the surgical route or choose to put Henry on the transplant list then. We wanted them to work on the heart Henry had come to us with. Plus, we questioned whether they could find a heart that small and we would have to choose which city to go for the transplant.

This was my mistake. There is no doubt I should have sought a second opinion and asked more questions. Except that I wasn’t really functioning then. Dr. Ward was offering us two alternatives but I could only focus on one. My mind was made up that we would commit to the surgeries. Heart transplants were heroic measures for basically terminal children. I couldn’t think of Henry that way. In my heart, I knew he was dying but my brain refused to rationalize that.

Henry did not do well with this surgery (2005). They had trouble getting him off bypass during surgery and his leaky AV valve looked worse. Once he was back in the PICU, I was him for just a while before I was rushed out of the room. Henry began bleeding out, presumably from an elevated level of blood thinners, and the surgeon had to reopen him right there. Ned had left briefly to pick up Ian and Gwyn. For what seemed like an eternity, I stood down the hallway where I could see the doctors and nurses working on Henry but no one would tell me what was going on or, more importantly, what was going to happen. A church friend, Robert, happened to be there with me. I was pacing and crying and shaking and after a while, he just had to leave. It was too much for him to witness and part of me wanted to go with him. For me, this was the scariest moment. When Henry stabilized, I returned to his room and had this inner monologue with him where I literally threatened his life if he ever did that again. At the time, it made sense. I was livid at his heart or this one freakin’ valve for not giving my kid a break. There were many times when I understood Henry might die but that night I believed he would.

But things, as they always did, turned around. This time Henry took only two attempts to extubate and we were home again within three weeks. He seemed to grow faster and by this time I had enrolled him in a special education program at his siblings’ elementary school. None of the children were like Henry – profound autism, that one wheelchair-bound, another nearly blind. Henry’s issue was that he was very small, had a lot of learning to catch up on and was very defiant. We started calling him Henry the 8th because the boy could be tyrannical. He had the most amazing teacher and aides but Henry cared about only two school-related events: going to the cafeteria and riding the bus.

Living between the PICU and real world became normal for us. We had three children. Gwyn was an ace student and soccer player. Ian was uber-affectionate but really had no desire to learn reading since he wanted to be a thief or a Chinese cook when he grew up. Then there was Henry, the family insurgent, seeker of mayhem, the child who, sooner or later, would wind up back in the hospital.

You had to look closely at Henry and know his story to be able to detect he was ill. Although he was five years old, he looked like a toddler. His lips, nose and fingers always had a blue tint to them – the result of his low oxygen rates. And he had a big belly. For a long time, none of us were sure if that was related to the heart or his binge eating. Basically, my child looked like a slightly blue, pudgy elf. With spiky red hair.

We got to go a year without surgery until they called Henry in for another heart catheterization. A heart cath is routinely done on CHD kids. A thin, flexible tube, often fitted with a camera, is inserted through the child’s groin and up a blood vessel to their heart. The doctors planned to do some diagnostic pressure readings on Henry, look at his heart and coil some collateral blood vessels. Guess what? When your circulatory system does not work the way it should, your body has the ability to grow small, “collateral” blood vessels to compensate. Problem was that the surgeons did not want Henry’s body to override all the hard work they had done and so those vessels have to be coiled – essentially cut off.

A heart cath is no big deal given everything else we had all been through. That morning Henry ran amuck up in the cath lab, rifled through the nurses’ filing cabinets and set off an alarm. The nurses and I agreed we could not get this kid sedated soon enough.

We expected good news. Neither Ned nor myself believed Henry had gotten any worse. The blessing of folly, faith or somewhere in between. When Dr. Overholt came out, he cautioned us. The repairs they had done so far were only temporary measures. The surgical interventions were not holding up well and that damn aortic valve kept weakening. Sooner or later, this heart could not endure a growing boy.

Ned and I didn’t know what that meant. Henry’s case would have to go back to conference, a new plan of action needed to be established. In the meantime, we should go home and wait to hear from them.

We took Henry home and he didn’t seem to deteriorate at all. He did run away a lot until I installed a $700 steel front door. He liked to go out front with his pink toy vacuum and Elmo slippers and obsessively clean the driveway. He jammed action figures in the ice dispenser and toilet. He despised Sunday school, adored his sister, ate cereal by the fistfuls. He seemed like an average two year-old except that he was nearing five. Still just 30 pounds, taking eight meds a day and with this bloated belly that did not have an exact diagnosis. Maybe it was protein losing enteropathy where fluid is retained in the abdomen due to heart failure. Or, the doctors, conceded, maybe his liver was starting to go bad because of the heart failure. All I heard was heart failure. I didn’t give a damn why.