Okay, here it is. The final installment of my saga into parenthood. Again let me say thanks to all of you have taken the time to read and comment on these long very personal posts. They have been tough to write and this last one was by far the hardest. Until now I have shared very few of the this details even with my friends. If you missed them you can read part1, part 2, and part 3 here. I promise future stories will be less tear inducing than this one has been.
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.