Today's story is going to be long. I may have to break it down into multiple parts, we'll see how it goes. As always, I am typing this as I recall things and there will be very little editing for content, grammatical mistakes, or typos. This story is not of the funny variety, but it has shaped and changed my life like no other. There are many details in this story that I've never shared with anyone outside of my wife and only with her encouragement, am I now feeling capable of sharing them.
The time was late October 2000. Jennifer and I had just celebrated our third anniversary and we were expecting our first child in a few weeks. We already knew we were having a boy and his due date was November 7th, but her doctor was a little concerned that the baby was growing too large so he sent us for another sonogram. Sure enough the technician took measurements and said we had a big one on our hands.
In response the doctor decided to induce Jennifer the very next day -- Halloween.
At the time my grandfather was in the VA hospital here in Amarillo and though I meant to go see him after Jennifer's appointment, I didn't make it that day because we know had a ton of things to get done before we became parents and now we had less than one day to get them all done.
That night I lay in bed -- tired from the hectic preparation, excited that the day was finally upon us, and extremely scared at the prospect of being responsible for another human being. Lying in bed, I made myself promises. I pledged to be there for my son. To guide him, to teach him, to be a part of his life on every level. My own father's involvement in my life had been sporadic at best and no way would I expose my own child to a lifetime of the same broken promises and absentee parenting.
My grandfather was the most influential male in my life and as I lay in bed that night before the big event, I not only thought about my unborn child whose life was just beginning, but also of my grandpa, whose time I knew was short.
Jennifer and I arrived at the hospital at O'dark-thirty the next morning and within half an hour the nurses had an IV started in her arm. Through it they injected the labor inducing medication and we were off.
Or so we thought.
Minutes ticked by. Hours slipped behind us and not much happened. Morning became afternoon. Afternoon gave way to evening and still we waited for our reluctant child to get properly motivated. Outside the weather turned nasty as a fog and drizzle set in ruining the night for trick or treaters. Inside, the hospital it was mostly trick and very little treat.
By far the most nerve wracking experiences of my life have been the times Jennifer was in labor, and that first time was the worst.
By seven P.M. things had progressed to the point where Jennifer was supposed to push, and push she did -- for two solid hours. But turns out our son had a head the size of a hot air balloon and that sucker wedged in her pelvis and refused to pass through. Jennifer pushed hard, but to no avail.
Then things started to go wrong. The babies heart beat grew weak and Jennifer's blood pressure dropped to dangerous level and the doctor said a C-section was in order.
Within seconds Jennifer, the doctor, a slew of nurse and myself headed at breakneck speed for the surgical delivery room. When we got there it was discovered that Jennifer's epidural had stopped working.
The doctor turned to me. "We can't do the surgery when she can feel her entire right side. Do you want us to try and redo the epidural or knock her out?"
By this time Jennifer was in lots of pain and her vitals were still crazy. As were the babies. So I asked, "Which is faster?"
"Knocking her out, but she won't be awake to see the baby right after he's born."
As the machines beeped and chimed and nurses scurried about, and Jennifer lay hurting on the table, I made the decision to do the fastest thing possible, even though I knew how bad she wanted to hold our son the minute he was born.
I was surprised how quick it took. The anesthesia knocked her out. The doctor made his slice, and within minutes he reached into the bloody goo and pulled out my son.
Some will say that witnessing the birth of their child is the most beautiful thing they've ever witnessed. I'm not one of them. The way he lifted my son up an out reminded me of the way a bass fisherman hoists his catch over the side of the boat. Only bass are not covered in nastiness. And this is coming from a guy who has gutted and cleaned hundred of animals. I have caught or shot critters cleaned them, cooked them, and sat down to dine on their flesh all within a half hours time, yet seeing the innards of the woman I love affected me in ways I never imagined.
The pediatrician took my son and went to work checking him out, while the OB/Gyn sewed my wife back up. With my concern and worry now split I rushed back and forth between the two trying to make certain both were going to be okay.
An hour later, Jennifer was awake though groggy. As she sat holding our fair-haired little boy I tried to relax, but I felt as though I'd been dragged down ten miles of cobblestone road.
But it was all over. Or so I thought. Little did I know that neither myself or Jennifer had any idea of what true worry felt like. In fact, we wouldn't know for several more days.
Two days later, on the morning we were scheduled to go home our pediatrician came in and said the words that all parent's fear the most, "Something is wrong." Those words destroyed nine months of our utopian dreams.
Our baby had a problem with his heart. Suddenly, we had a fight on our hands.
TO BE CONTINUED ...
Parenthood Part II
The doctor tried to reassure my wife and I. "It could be nothing. Lots of babies have murmur's. I'm sure the pediatric cardiologist will be able to tell us more after he runs a few tests."
Waiting for those tests, Jennifer and I held hands, but said very little. I wanted to offer her some type of reassurance but how could I -- when the situation was beyond my control? Already I'd promised myself to teach and protect my son and within the first few days of being a father I'd failed at the latter.
At the age of twenty I'd been diagnosed with a genetic heart condition called Wolfe, Parkinson-White, and my assumption was that I'd passed on my shoddy heart gene onto my son. For the first time in my life I truly knew what guilt felt like.
The tests confirmed that something was wrong. That is all I remember. I do not recall the exact words the cardiologist used to deliver the news. I do not even remember mine or my wife's reaction. I probably should but I do not.
I do know it was said that our son would need surgery and that the hospital in Amarillo was not equipped or staffed to perform such a procedure. Houston and Dallas were discussed, as was the official medical term for our son's condition. --Coarctation of the Aorta.
Basically, the main vein that leaves the heart supplies blood to the lower half of his body had a narrow spot which prevent his legs from getting the blood he needed. this condition was very severe came him a slew of other problems if not corrected. I am not capable of writing the worst of them.
Soon after the harrowing news was delivered, we were told that Children's Hospital in Dallas was sending a plane up to pick up our son and fly him to Dallas. The plane had room for only one parent to ride along.
Jennifer still had staples in her stomach from the c-section and really she was in no shape to be traveling, and I couldn't bear not to be with my son, so I told the hospital staff that I would be going along.
The plane was supposed to arrive in a few hours so as my son was moved into the Neonatal ICU at Northwest Texas Hospital, I made a mad dash for home to gather a few things to take along to Dallas. Jennifer called her OB/GYN and talked him into removing her stitches early, so that she could catch a commercial flight along with her sister and meet me in Dallas. Her parents, my mom, and her sister's family made plans to make the six hour drive south the Dallas so as to provide us some much needed support.
I left the hospital where my wife and son was and headed for home. Outside the sky was dark grey, and the clouds hung low in the sky. I passed the VA hospital where my grandfather was, and wished I had time to stop. I'd been to visit him once since my son was born, but he'd been asleep so I still had not talked to him. My mom and grandmother had told him the news that we'd had a baby boy and that we'd given him my grandfather's name (Lee) for a middle name.
Tears streamed down my face as I drove by the facility. I looked to the building and spoke to my grandfather as if could hear me, even though I knew he could not.
At home, I hastily packed a bag, made arrangements for the care of our dogs, and hurried back to the hospital. A freezing drizzle began to fall as I sped back to my family.
My heart shattered when I arrived and found my tiny son in the throes of a seizure. The doctor and nurses frantically worked to end his violent shaking. Jennifer was there, but again, I do not remember the details of what was said between us. No one had answers as to why our baby was having a seizure, other than to say seizures were not a normal symptom of his heart condition.
After what seemed like an eternity, but what was probably less than five minutes, his body ceased it's frantic movements. Then he lay still. Too still, but the doctors said that was the result of the medication they had given him so that he would rest for the flight.
Delayed by the adverse weather the place finally arrived three or four hours later than expected. My son and I rode by ambulance out the the airport where a small twin engine plane with multicolor balloons and the words Children's Hospital of Dallas were painted on the side.
I stood on the icy tarmac while the paramedics lifted the plastic enclosed incubator inside. A thin sheen of ice now covered the ground and the sides of the plane. The crew made room for me and closed the door. As we sped down the runway for takeoff I watched my son, comforted a slight degree by the rise and fall of his chest, and the fact I was with him. I hurt that Jennifer was not there with us.
I tried to imagine the scene on the other end. I wondered how long it would be before he went into surgery. I wondered how long he would be out. How long the recovery would take. How long before we got to all go home and live the life we'd dreamed these past nine months. I did not allow myself to ponder the other question that lurked at the back of my brain, but as we lifted off and cut through the low hanging clouds I, for the first time in years, prayed to a God I wasn't sure I believed in.
To be continued ...
An ambulance waited for us we we landed at Luv Field in Dallas. Darkness had set in and the weather was just as miserable only it wasn't quite cold enough for the moisture leaking from the sky to be ice. In a cold drizzle, I watched them move my son from the plane to the waiting ambulance.
There wasn't enough room in the back for me so I rode shotgun with the driver as we made our way across Dallas's rain slick streets.
Only a few minutes later we pulled up and unloaded beneath a dripping canopy. I was not prepared for the scene once we got inside.
My son was wheeled into a small room. One of Children's Hospital's neo-natal ICU's. For the first time that day I counted my blessings. All of the babies in that room were hooked to machines. Most were tiny, underdeveloped preemies. The few that looked older had obvious maladies. My son was by far the biggest infant in the room and despite the diagnosis, looked robust and healthy.
Gathered around most of the cribs was one or two haggard looking parents. I'm sure I looked no better to them, but at that moment I selfishly thanked God that my situation was better than theirs. I watched while the staff hooked my son up to various monitors and a new IV. All looked good and stable and I relaxed the tiniest of bits knowing that nothing too crazy was going on.
I was instructed to leave the room and go fill out registration papers. As I signed my name to what seemed like a thousand sheets of paper my wife and her sister arrived . I could tell Jennifer was hurting, but she wanted to see our son so I quickly finished and asked the receptionist to let us go back.
She called back to the nurses desk to make certain it was okay. It wasn't. according to the ICU nurse our son was in the throes of another seizure. They wouldn't let us back to see him, so we sat in the waiting area and held our breath staring anxiously at the door to the back.
A solid half hour passed by. Other parents went in and out. At that point we didn't know any of them well enough to ask what they'd seen or overheard. That would change in the coming days as we all became spy like. Anytime the nurses or doctors were examining or talking about your child you were not allowed back, but as I said the room was small maybe 12 by 24 so things were easily overheard. Over time we parents bonded, and at times it felt like us against them with the doctors and nurses being them, an odd feeling given the fact we were depending on this same individuals to safe guard the life of our precious babies.
A nurse finally came and got us. She explained that they were administering medicine when all of a sudden our son began to twitch and jerk involuntarily. As the nurse talked a very dim light flickered in my brain. The nurse said "It was almost like an allergic reaction to the medicine, but the medication we used is very common and according to his chart it was the same thing they administered in Amarillo."
But before I could digest the information and come to a conclusion the nurse pointed to our son and exclaimed, "Look he has Harlequin Phenomenon!"
My heart sank. All we needed was one more problem to go along with the defective aorta and the seizures.
Jennifer and I looked at our son. Straight down the middle of his face there was a line. On one side his face was flushed and bright red. The other side was pale white. I guess our faces where lined with worry because the nurse quickly explained that Harlequin Phenomenon is rare but nothing to get concerned about. There is also a horrible skin disease that bears the name of harlequin but here is a brief medical description of the condition my son had.
Harlequin phenomenon is a striking reddening of one side of the body and blanching of the other half with a sharp line of demarcation in between.
Each episode may last from seconds to minutes occasionally longer and the episodes may recur. Such episodes occur most often during the first few days of life. They are thought to be a vascular manifestation of the changes that are occurring in the autonomic system in the newborn.This event occurred a few times in the coming days and then stopped all together. What didn't stop in the coming days was the uncertainty.
The first doctor we had knew and trusted the the pediatric cardiologist from Amarillo, but she went out of town after that first night. The second doctor expressed serious doubts that our son had coarctation because he said it was too difficult to diagnose through the tests the doctors in Amarillo had done. His primary concern was the seizures so he brought in a neurologist who began testing our son's brain. Meanwhile our son continued to demonstrate all the classic symptoms of a coarctation yet that idiot second doctor refused to acknowledge that the rubes from Amarillo might have called it right. My words not the doctors, but our meanings are the same. Yeah, I'm still a bit bitter of this time frame.
My most vivid memories of these days are the people that surrounded us. not our family who were there to provide support but the strangers that we were suddenly tossed in together with. There were parents who cared and hurt every second for their child, there were babies there that the parents never showed up to check on, there were parents who were angry, delusional, and parents that seemed annoyed that their child had inconvenienced their life by entering this world less than perfect.
I spent much of my time angry and fighting the urge to confront some of these fools but knew it would do no good. Sadly, several babies that shared a room with my son that first few days did not make it. Some from the caring loving parents and some from the other side of the spectrum. It was just as heartbreaking either way.
And sobering. To this day I feel as though I aged ten years with each death and I grieve for those parents.
Since doctor #2 decided my son's most serious problem was not his heart we were moved on the fifth or sixth day up to a regular room where the staff would continue neurological testing. For the first time I wandered around the hospital. Troy Aikman had sponsored a wing on the oncology floor. A ton of athletes had donated memorabilia and when i needed a break I often strolled up their to check things out. Along the way I stopped and talked to older kids punching around IV's and again I counted my blessings as I met these kids who were battling the cancer demon. Very few had hair but surprisingly most had bright smiles.
Jennifer was hurting far more than she'd admit even know so each night I insisted she go back to the motel with her family while I stayed and slept in our son's room.
This post is really discombobulated, but I am simply typing things as I remember. And during this time period I felt discombobulated, so it's only fitting I write it that way.
One such remembrance is of the milking room. Okay, so it's real name was the lactation room. Jennifer wanted to breast feed but of course our son was in no condition to nurse, so every few hours she would go in this room and use a machine to pump her milk. This milk was then frozen and stored for later use. I often sat with her while she endured this torture and often times this was the only alone time we had.
Life when on like this for a week or so. Tests all day, restless sporadic sleep for me all night. Our son's room overlooked the helicopter landing pad and the noise from that along with the fact they buffed the hall floors every night and the frequent visits from the nurse, and the waking up to warm the previously stored breast milk so I could bottle feed my son all left me very tired. I spent much of my time in a daze and my emotions were as scrambled as the previous sentence.
Back dropping all of that my grandfather continued to worsen. We also received news that Bart, the bloodhound Jennifer had owned when we married had finally succumbed to emphysema. That news would have hit her hard had we not already been on emotional overload.
This routine went on for days and then the neurologist scheduled a test which my son would have to be sedated for. Jennifer and I went to the lab with him. They administered the sedative and ... he had a seizure.
The medicine they'd given him was called Versed, the same thing they'd used in Amarillo and upon our arrival in Dallas. Three doses, three seizures. He'd had a grand total of 0 seizures any other time but guess what the neurologist refused to admit that their was a correlation. She claimed Versed never caused that kind of reaction and her recommendation was we put our son on some kind of serious seizure medication.
I asked for information on the medicine and a nurse brought me some literature. i do not recall the name of the stuff but the side affects scared me to death. And if he started taking it he would be on it for years as it caused problems to simply stop taking it. Jennifer and I discussed things over and decided not to put him on the medicine.
That very afternoon, the neurologist came into my son's room with a group of students in tow. When I told her we'd decided against the medicine, she very angrily told me, "I was putting my son's life in danger."
I asked her if any of the tests they'd ran on him had came back abnormal.
She said no.
I asked her if he'd ever had a seizure except when he'd been given Versed.
She said not that she was aware of.
I asked her if she could prove to me without a doubt that the versed was not the cause of his seizures.
She said nothing is impossible, but that she found that very unlikely.
So then I asked her if the roles were reversed and it was her child would she put him on such a serious medication without any real proof he needed it.
And she said the proof is my word. I am a doctor and you are not.
And I told her to get out because I needed more.
On her way out the neurologist said I was being naive and that she only hoped it wouldn't be too late before I came to my senses. To this day I've never been madder than I was then but guess what. My son has never had Versed again and he has yet to have another seizure.
A nurse that witnessed the entire thing said I'd done the right thing and that the neurologist was simply ticked off because I'd challenged her authority in front of students.
I never saw the neurologist again as the very next day our original doctors came back. She was quite put off that no one had done anything to correct my son's aorta.
And just like that the scariness of heart surgery, loomed back over us.
To Be Continued ...
Parenthood ... the conclusion.
Doctor #1, the cardiologist that had treated my son when we first arrived in Dallas, began running tests to confirm the original diagnosis. She made special note that under no circumstances was Versed to be administered and after being in Dallas for so long we were right back where we started ... with a diagnosis ofcoarctation of the aorta.
In the meanwhile, I continued staying at night in my son's room. Sleep was tough anyway so I ended up staying up deep into the night listening to the medical chopper take off and land and watching CNN. This was during the time of hanging chads and Florida and each night I watched the drama between Al Gore and George Bush play out.
One night I'd finally drifted off to sleep when a nurse shook me awake and said it was time to feed my son. I shuffled off to the little kitchen where the milk my wife had tortured herself over was stored. Each baggie of milk had a hospital provided label with the parent's last name and so forth. I'd noticed that among the collection of baggies there were several that bore the nameLangenbrunner.
An unusual sir name to say the least and unless you are a sports fan, and in particular a NHL hockey fan the name probably means nothing to you. But I am a hockey fan and a fairly rabid Dallas Stars fan at that, so I knew they had a winger by the name of JamieLangenbrunner.
Still, I never expected to walk into that little kitchen at 3 gawdawful in the morning and run into an NHL all-star. And guess what? He was warming up a little baggie of breast milk just like me. Between the sleep, my shock at seeing him, and not wanting to come across like a mindlessdoofus I merely nodded and said hello. He responded in kind and then shuffled out the door.
The next day Mr. Langenbrunner sat at the end of the hospital wing and signed autographs for hours. Much as I would have loved to talk to him, I didn't get in line as I didn't want to take any of the time he was giving to all the sick kids who really needed a pick me up. Besides, how stupid would I have look standing there like a big 6'5" overgrown kid amongst all those ill children with shaved heads and roll-around IV carts?
Once the initial diagnosis of coarctation was confirmed, the cardiologist sat down to talk over what should be done next. She said surgery was the least appealing, but probably necessary. However, she first wanted to try medicating the problem. She said it was possible that the troubled area would widenout on its own as he aged or that surgery could be postponed until he was older.
And to give us a break from living in the hospital she said we could take our son home for the weekend. Problem was we were nearly four hundred miles from home. So we checked out of the hospital and set up camp in the hotel room Jennifer and my mom had been staying in. Her parents and her sister's family had an adjoining room.
Truth is that weekend was far from restful. Without trained medical staff around I felt uneasy the entire time. I watched him breath. Sleep. Eat. All with a worried eye. Over the course of that weekend I slept worse than I had in the hospital. That may have been the longest weekend of my life as I left that room only to fetch food for the rest of us.
Monday morning we went back to the hospital with the understanding that if our son's blood pressures were near equal in both his feet and arms that we could go back to Amarillo. And if not -- surgery would be required. The disparaging blood pressures were a result of the narrow passage.
Monday morning dawned and we headed off hoping that maybe we would get to go home.
It wasn't meant to be.
The differences in the blood pressures were as stark as they'd ever been and we met with the surgeon that very afternoon. I remember staring at his hands as he talked. He explained the procedure, how they would go in from the back just below the shoulder blade and cut the narrowed portion out and then sew the two ends together. The concern would then be if that surgically joined portion would grow with the rest of our son. If not subsequent surgeries or procedures could be needed. Through it all I kept looking at this man's giant hands and wondering how on earth they could fix something tiny and delicate inside my baby.
The surgeon went on to say he did this particular surgery all the time. Matter of fact, he stated, "I did this very surgery today on the newborn of a professional athlete."
Of course I knew what athlete he was talking about and the knowledge comforted me. Money might not buy happiness but it does buy things such as top notch medical care and I figured that an athlete, that made hundred of thousands of dollars a year, possibly even a million would seek out the very best to help his son. I didn't have that kind of bank account, yet the exact same surgeon would be performing the same surgery on my son as had his.
The surgery itself was a slow torturous affair. I don't remember breathing much less talking. We sat in a tiny room and stared at each other -- waiting, wondering, and praying. At his time in my life I was very anti organized religion and bordering on being a non-believer, but spinning the common saying away from foxholes let me say, there are no atheist parents in a children's hospital.
Then word came. The surgery was over. The procedure had gone as well as possible and according to the surgeon, our son lost no more than a thimble of blood.
We breathed a sigh of relief, but there was one draw back. It was back to the NICU unit.
The Intensive Care unit was somewhat easier this time around as the uncertainty was gone. It felt as though we'd reached bottom and were not heading back up. That was partially true, our son had reached bottom, however I myself, still had a ways to fall.
During that second stint in the ICU, Jennifer and I befriended another couple. Their daughter was older, four I think and she was in recovery from something like her seventh or eight surgery. They were pros at the whole they and using theirexperience they guided us along making life much easier.
A few days later my son got to go to move to regular room. So did our new friends' daughter.
Things were looking up, but then word came from Amarillo that my grandfather had taken a turn for the worse. My uncle told me mom she needed to come home, as it didn't look good. Knowing that her first grandchild was fast improving, my mom caught a plane and flew back to Amarillo to be with her dad during his last days.
Early the next morning friends drove down from Amarillo and surprised Jennifer and I with their visit. While they were there my son made a soft cooing noise and smiled. "Ooh look he's smiling," our friend said.
A nurse in the room said "Babies do that when they pass gas."
Our friend shook her head and said, "He's still smiling. Look at his face. You'd think someone had just whispered a joke in his ear."
Ten minutes later the phone rang. I answered and received word that my grandfather had passed away and in that instant I knew that someone had indeed whispered in my son's ear.
The writer in me wants to end there. To say my grandfather had one private conversation with my son. That would be a fitting ending to this story, but I'd be leaving out a big part of how this event changed me. I'd be leaving out my nervous breakdown.
That night as my son continued to improve, I thought about my grandpa and all he'd meant to me, and the fact I never got to tell him good bye, or tell him about my son. As I wallowed in regret for the things I hadn't done, and pity for the things I'd never get to do, I broke inside.
I shattered, and the shards of my sanity were jagged like a smashed piece of pottery.
I felt the darkness taking hold so I left my son's room and found a dark waiting area where I could be alone. I stared out the fourth story window that overlooked the lights of Dallas. I stared outside and cried. I cried, my body shook, and when Jennifer came looking, she found me curled on the floor in the fetal position. She tried to console me, but in that instant I couldn't be reached. She cried and brought a nurse who tried to pull me back out of the murky depths, but again, I was unresponsive.
They sent for the hospital clergyman, but he was unavailable. On some level, I knew everyone was concerned for me. and even though I wanted to get it together, I simply could not find the strength to do so.
Then he showed up. My new friend. The father of the little girl who'd had heart surgeries every few months for her entire life. He sat with me an talked, low and steady. His voice, his words, his sharing of his experiences, wrapped around me and pulled me back.
He'd been in the same position I was. He'd broke down after the third or fourth surgery. He's crumbled under the pressure of feeling he had to do it all and yet not be able to. Like me he'd slept by his babies bed, tried to be strong for his wife and child far longer than either his body or mind was able. Like me, he'd finally hit bottom and realized parenthood was not something you had to do alone. He talked me back from the abyss I put myself in and I am sad to say, I never got to thank him.
Given the circumstances, the doctors and nurses allowed us to leave early. The very next morning we checked out and drove home to Amarillo.
We buried my grandfather the very next day and it still saddens me that he never got to spend anytime with either of my boys.
I am very blessed to say my son has not had one iota of heart trouble since the surgery.
He is the same boy that took not one, but two years of tap and ballet classes, and just finished his first season of flag football. He is a very vivacious and happy child and I owe the cardiologist and surgeon from Children's hospital more than I could ever repay. As I do my angel of mercy. Deep into that long night in Dallas he talked and slowly brought me back. He gave me back my sanity and sadly I never got any contact information. I could not find him that morning we were sent home, but I can only hope his story has turned out as well as mine. I think of him often and I pray that his little girl's smile is ever bit as bright as my son's.