I am amazed that my wife ever agreed to date me, let alone marry me. First, off I know it wasn’t for looks, she is a beautiful woman and I am more of the “great personality” type, I know it isn’t for the money, we do ok, but I definitely don’t have Bill Gates on speed dial. I mean even picking a movie to watch is a chore and a half, peace treaties negotiations have gone smoother than this decision.
The problem is that I grew up with Indiana Jones being my hero, having nightmares about Darth Vader, my favorite movie quote was “Hello, my name is Indigo Montoya, you killed my father, prepare to die.” and I went as a proud officer of Starfleet for Halloween. Yeah, I was a trekkie. My wife, on the other hand, has no interest in Star Wars, cannot stand The Princess Bride, and probably thinks that a tricorder is a DVD player is that can play three DVD’s at once (Love you Honey). She is a romantic comedy, real life type of girl, with her feet firmly planted on the ground, while my head is continually off in the clouds; guess maybe, we balance each other well, after all. Though, I have to give her credit she is a fan of Indy.
Aubrey also has a love of roller coasters that I do not share. We go to the amusement park and she runs around like a kid in a new toy story, promised to have whatever she wants. She wants to ride each and every roller coaster, as quickly as she can, and as often as she can. I, on the other hand, look at a roller coaster and I feel like I want to throw up. Yeah, yeah I hear you mutter “Chicken” under your breath. Well, you know what…your Right! I am really a chicken when it comes to roller coasters. Don’t get me wrong, I will ride them and will, usually, enjoy them. When you get nauseated, though, at the spinning Tea Cup ride at the children’s fair, you start to realize that the Ferris Wheel is much more your cup of tea ( pun intended).
There is another roller coaster ride that Aubrey and I have been on. One that we never bought a ticket for and one that we don’t ever remember getting in line for, a roller coaster, not of wood and steel, but of human emotion. A roller coaster of joy, pain, excitement, and of stress that never took us for a, physical, flip and twist but, certainly, made our stomachs turn and flip-flop. It is a ride that we went on about three years ago, when we found out that, not only, were we going to be expecting the birth of our first child, and all the emotions that go with that, but, also that there was going to be a serious, life threatening issue with said child. You might be going on that same roller coaster, as you are reading this. They are not all the same, each one is different, but I hope that, as I share mine, you might be able to relate and realize that you aren’t alone in all of this. I want you to realize that there are so many different emotions that goes into the initial “finding out” phase. I want you to have a little warning to prepared, this is a marathon, not a sprint.
First off, of course, for any good coaster to be a good coaster, you need that first hill. That big hill, with the slow, adrenaline filled ride up to the peak, with you locked in to the seat at its complete and total mercy, told you I wasn’t a fan. Ours started with my wife coming to me one night, after I had gotten off of work and uttering those fives simple words that would change our lives forever, “HONEY, I THINK I’M PREGNANT!!” We had been trying for a year to get pregnant, and had a few maybes, but a lot of disappointments, so these words were spoken in a nervous anticipation, a cautious hopefulness, and with the hesitantly excited voice of a woman that was hopeful but also almost too scared to believe it.
The words “HONEY, I THINK I’M PREGNANT!!” were received, by me, with a nervous anticipation, cautious hopefulness and with an overwhelming sense of terror. They were received by a man that was, at that very moment, quite certain that he was in WAY over his head. Don’t get me wrong, I have always wanted kids, ever since I was kid myself. I just always imagined myself being so much smarter, mature, and way more of an adult than what I felt like I was. Part of me still felt like a kid, how in the world was I supposed to raise one.
Come to find out my wife had a bit more than just a hope to back up her feelings. She had the proof of two pregnancy test to help her confirm her hopefulness. She ended up taking two because the first one had only a faint double line, so she wanted to be sure. Now, here is where my wife and I differ. Aubrey is thrilled and beaming with an excitement of a dream come true. I am dumbfounded, in a state of disbelief, with that dear in the headlight stare and wanting more proof. My wife, who is a wonderfully patient and accepting woman, took pity on me and accompied me to the store to pick up for a few more tests. See, in my mind, 99.9% accuracy just isn’t safe enough and if anyone could screw it up, it would be me. Now, as I am sure you have realized and I feel rather silly admitting that I didn’t catch on to it right away, I have NOTHING to do with the taking of a pregnancy test. My contribution was over and done with about a month ago and there was absolutely no way that I could have messed up the test and I was, unwittingly, suggesting my wife had wrecked not one but two, nearly, error-proof tests. In my defense, all I can say that, is when a man is faced with the birth of his first child, all logic goes out the window and that I am married to the most patient and wonderful woman in the world. Though, her patience did run out when I wanted to take her to the hospital, just to be on the safe side, after both of those tests came out to be perfect….no one’s perfect. A short period after, though, my wife did have a doctor’s visit, they did do another pregnancy test, and that one was positive as well, so that is five positive tests for all you math majors out there. So, I think that I could start feeling certain about this little one growing inside my wife, at least…a little.
So the actual pregnancy had been confirmed, and the doctor laughed at me for wanting to take Aubrey to the hospital. Anyways, we got about the business of letting everyone we knew that we were pregnant. It was a wonderful, exciting, and fun time. It was great getting the hugs, handshakes, and smiles from our fathers. We loved the congratulations and laughter from our friends and co-workers. The only issue we ran into was making sure ALL the breakable objects were out of arms reach of my mother before we told her…she gets a bit excitable… Love you Mom! Needless to say, our roller coaster of emotion was on its way up in joy and excitement.
As the months went by the coaster just got higher and higher. I promise you, hearing your child’s heartbeat for the first time, on the ultrasound, is the closest I am going to get to hear the heartbeat of angels, this side of heaven. I had started to not hyperventilate, every time I thought about being a dad and Aubrey was starting to show and starting to feel the baby. It is undescriable the excitement we had at this point in our lives. The only problem is that, with any roller coaster, what comes up must, tragically, come down…hard.
Ours happened on the day of the 19th week appointment. It was a beautiful day, in every sense of the word. The sun was shining, it was nice and warm, and we were making our way to the OB/GYN and talking about what we were thinking we were having. Aubrey wanted a girl and had a really good feeling about it too. I was, hoping, for a boy, but, secretly, was suspecting a girl. I learned, a long time ago, never bet against my wife.
We arrived at the doctor’s office without incident, but things started to descend from there. When we were, politely, told that the ultrasound machine was broken can you imagine the looks on our faces? BROKEN! I mean, how do these things break? I mean, did the tech spill coffee on it? It just didn’t seem possible. To make matters worse, they couldn’t guarantee that it would be ready anytime in the near future. They had a mechanic working on it but, there were no promises. It was a dip in our coaster, to be sure, but in the great scheme of things, it was a small dip, just a minor disappointment. My wife, though, is a very determined woman, and when she sets her mind to something, she is not easily deterred. She started negotiating with the receptionist; it was actually rather beautiful to watch. The reception started with us rescheduling for another day, Aubrey countered with us going out to lunch and coming back in and getting in later on in the day. Taken aback, the receptionist, surprised asked, “Can’t you wait?” My wife, who would give the shirt off her back, the lunch she was eating, and who has the patience of a saint, looked her dead in the eye and matter-of-factly said “NO”. I think you could hear the “THUNK” of my jaw hitting the floor. My wife is a very determined woman. So, off we went to lunch and, sure enough, the thing was fixed, it was probably scared of my wife.
The ultrasound tech is an amazing piece of technology. It has the ability to show our little child in Aubrey’s belly. It isn’t like a cartoon picture though; it is kind of like a grayish-skelonty looking thing. It was the cutest grayish-skeletonty looking thing I have ever seen though. It was also definitely a girl; Kylie was mooning the tech when she took the picture. There was no doubt about sex, but there was doubt about some of the other things though. Our rollercoaster had, just hit its peak.
Sex is not the only thing checked at the nineteen week ultra sound. The tech also checks to make sure that the organs are all there and are forming properly. Kylie’s brain looked great; she properly got that from Aubrey. Everything was looking great, until they got to the heart. At the heart, the tech got quiet and intense, you could see in her eyes and face that something wasn’t quite right. After a few minutes, she excused herself, saying that she couldn’t get a good look at the heart and that she was going to get the nurse, the doctor wasn’t in that day.
Quick side note, I am not a patient man when it comes to important news. Trust me, though, no matter how many times you ask, or how you ask, the ultra-sound and x-ray techs aren’t going to tell you much. Even though they have seen so many x-rays and ultrasounds, that I am sure they see the world in shades of gray and black, and they, probably know when something looks out of place, they can’t. It is out of their area or responsibility, it is not that they are being mean or cruel, they are ethically not able. Also, even though they could answer some of your questions I am sure that there is a lot that they can’t and that wouldn’t be any helpful to you. So, wait for the doctor. At least, that is what I try to tell myself.
The nurse and the tech, the doctor wasn’t in that day, came into the room with a look of utmost seriousness and somberness. Trust me, after a while you are going to be read them like a book. They let us know that their MIGHT, keyword MIGHT be a problem. The problem was that they couldn’t get a good look at the heart. The MIGHT comes from the fact that it could be the simple fact of the baby being obstinate and laying in a way that couldn’t get a good look at the heart or there was also the chance that they couldn’t get a look at the heart because there was an actual problem with the heart. Either way, we were being referred to Maternal Fetal Medicine, where they could get a better look at the heart. We would see them in a couple of weeks,
Another side note, one of the hardest things I have learned through all of this is that you have to be patient. Ok, in honesty, I have learned that I have to be…just not HOW to be. Well, technically, you don’t HAVE to be patient, but it will be forced upon you one way or another. We didn’t want to wait a couple of weeks, a couple of days, a couple of hours, or even couple of minutes. We wanted to know yesterday, give us the address to the office, we will drive over there and camp ourselves in the lobby until they see us. Unfortunately, it doesn’t work like that. Especially, when it comes to the specialty clinics, with those you can expect to wait weeks, if not sometimes, month, in advance. Take some solace, though in the notion in the fact that the doctors believing that your child is healthy enough to wait.
Needless, to say our coaster was plummeting. We were trying to put the brakes on but, we were burning out them. This was supposed to be a happy moment, not terrifying. The only thing keeping us from utter dismay and bottom was the thought that maybe Kylie was just being lazy. Maybe she wouldn’t turn around and give them a look at her perfect heart. Certainly, that made more sense than something wrong with the heart. By the time the day was done I had convinced myself that my daughter was just simply lazy, and that was all. My car had stalled out and a small light began shinning in the darkness of fear.
The maternal fetal medicine appointment had the potential of being the best or worst day of our lives. Those next couple of hours would decide the rest of this pregnancy. Once again, the tech did an ultrasound, this one much more in-depth, and once again the tech went to go get the doctor. Aubrey and I sat in the room with anticipation and, more than a little fear, as we waited for the doctor to come in. Finally, after what seemed like hours, but really was only a few minutes, the doctor came in and told us the diagnosis. My daughter was not being lazy, at all. There was something, very seriously, wrong with her heart. She was going to need a lot of medical attention soon after she was born. Basically, we had three possible outcomes. They all had her surviving delivery but, after that, they could be fairly bleak. One possibility, Kylie was born, but not strong enough to survive surgery, so we would take her home and make her comfortable, Another was that Kylie would have the surgery and, either, not make it off the table or pass away soon after. Finally, we had the option of Kylie surgery being born and living a full and happy life. They were referring us to a Pediatric Cardiologist and we would see him in a couple of months, because of a back log. The matter-of-factness of it all just knocked me over
With that, our car plummeted into the murky depths of despair and fear, and the door of with that little glimmer of hope slammed shut in our faces. To say we were crushed was an understatement, we were inconsolable, our lives shattered around us. What was supposed to be one of the happiest moments in our lives had morphed and been distorted into a nightmare. While preparing for the birth of our little one, and the joys that went along with that, in the back part of our minds we had to prepare for the possibility of her funeral, as well. We had to prepare for the end of a life that hadn’t even had a chance to begin/ We had to decide what we wanted to be done with the body, whether or not we wanted to donate the organs (we decided we would), and all the dark topics that went along with it. To top it off, we had to wait months before we could get any more info. We had been given, in our hearts, a death sentence and sent on our way.
We left that appointment with tears in our eyes and our hearts and spirits crushed. We then had to go through the tortuous process of relieving it again and again in letting everyone know that there was a problem. Aubrey’s dad had taken us out for lunch and we were just processing everything that had just happened and what we still had to do in the months to come, when my phone rang, with a number I didn’t know. Now in all honesty, I barely wanted to talk to the people I knew, let alone to some number I didn’t recognize. To say I was feeling less than social, was a little bit of an understatement. This was one call, though, that I was glad I took.
There are instances in Kylie’s life that I like to refer to as miracles. Little, some very big, moments of joy and excitement in some of the darkest moments of this, very long journey. Some can be easily explained, while some border on the unexplainable. We received a call from the pediatric cardiologist; they had a cancelation and wanted to know if we could come in at the end of the month! I don’t remember if I yelled yes into the phone, or if I was just screaming it in my head, Granted it wasn’t that same day but, waiting a few weeks was so much more manageable, than a couple of months.
The pediatric cardiologist was an adventure in so many ways. We got to the appointment, my wife got set up for, yet another, ultrasound. Kylie has been photographed more than some Hollywood stars. My wife had lay down on the table, had the gel on her belly and all of a sudden an alarm started going off. I was hoping that, maybe, we were the one millionth patient and we won a prize. No such luck, it was the fire alarm and we were evacuating the office. My wife and I looked at each other and the intent was clear, we weren’t leaving that room unless we saw smoke and flame! By God, we were here for answers and we weren’t leaving without them. The cardiologist had other ideas. He promised us that we would pick back up where we left off, but we had to leave. So, we were herded out of the building with everyone else. Come to find out, someone thought it would be funny, and pull the alarm. I felt like if I ever got my hands on that person, I would show him “funny”. Once, we had the all clear, we were herded back in. I fought the urge to MOO!
After getting ourselves situated again, my wife back on the table, and the gel back on her stomach, we could, finally, get down business. The cardiologist, while mumbling some very intelligent sounding words, took quite a while looking at the ultrasound. Finally, turning to us, he informed us that Kylie did indeed have a heart condition called Hypo plastic Left Heart Syndrome, where the left side of her heart was severely underdeveloped and non-functioning. Then he did something that took me back a little, he started drawing pictures. He took out a booklet of congenital heart defects and drew what Kylie’s heart looked like versus what it should look like. He then went on to discuss the options that we had, there was going to be three major heart surgeries, that would happen very soon after birth and there was the possibility of a heart transplant. He then started to name off different hospitals and surgeons that he could send us to, finally settling on Dr. Bove at University of Michigan.
Through all of his talking, I could feel a lightness come over me and I could see on my wife’s face that she was feeling the same way. I felt like we could smile again, we had OPTIONS. This wasn’t just a hopeless death sentence, our daughter had a chance. We really confused our cardiologist because he looked at us and asked if we understood how serious and dire a situation this was. We assured him we did, indeed, know how bad it was, but that he was giving us hope. We thought that our daughter had been given a death sentence but he had given us a bit of a reprieve. As hard as it may seem, our car was starting to rise again. Trust me, in this journey, knowledge is your best friend and ignorance is NOT bliss. Information makes the mountain more climbable. Never be afraid to ask questions and seek out the answers.
Our daughter’s cardiologist set us up with one more appointment; we were going to meet THE MAN. No, not Shaft…we were going to meet Dr. Bove, the man who would, literally, have my daughter’s heart in his hands. We were going to spend the day at U of M hospital, meet Dr. Bove, get an idea of what surgery day would be like, and let them run tests of their own. This was an appointment we were, eagerly, anticipating.
The University of Michigan Hospital, in Ann Arbor Michigan, is huge. It is, basically, four or five different specialty hospitals attached to the main hospital. People come from all around the world to seek treatment. We spent the day culture shock, as we were shuffled from one office to another, meeting doctor, nurses, and techs after doctors, nurses, and techs. There were so many different ultrasounds and blood works that, I am fairly sure, my wife felt more like a science fair project than a person. Thankfully, the hospital provided a nurse to be our guide around the hospital. I am still amazed that I can now give people directions around that monstrosity they call a hospital. Trust me, what you will be able to do as you go through this will astound you.
Finally, we got to meet HIM. It wasn’t God, but it certainly felt close. It was Dr. Bove, our daughter’s surgeon. This man is world renowned, perfecting the second stage of my daughter’s surgery. He walks down the hall and people point and whisper “That’s Him!!” behind his back. He is the rockstar of the congenital heart defect world. To say it was intimidating was a bit of an understatement. We had this feeling, though, that we were in good hands.
\ Dr. Bove was very serious and to the point. Come to find out that, even with all the hurdles my daughter had, there was more. The thought it never rains, but it pours came to mind. Apparently, when the heart and lungs are fully developed there are blood vessels that help transport the blood from the heart to the lungs and back again. While they are still developing, there are holes in the heart and lungs that allow for the passage back and forth. My daughter didn’t have these holes and the blood was slowly backing up into her lungs, damaging them. I know, I could barely believe it myself. The worry was that the blood was that, as Kylie was getting bigger, the more blood would continue to back up in the lungs and the more damage there would be. As long as Kylie was in Aubrey, most of the blood was being circulated through my wife’s system. When she was delivered, and her system had to take over, there was a possibility it could just be too much. The issue was that the lungs could become too damage to even sustain Kylie through surgery. We could, honestly, make it through delivery, but not be able to go any farther because the lungs were too far gone. To top it all off, there wasn’t a thing we could do about it. There was a short discussion about an inutero operation, but Kylie was too unstable. Talk about a punch to the gut.
So after all that, we were sent home to follow up with cardiologist and the other doctors. The goal was to hit at least 36 weeks, then they felt that she would be strong enough to be born and hopefully, her lungs wouldn’t be too damaged. Hurry up and wait was the name of the game, as our roller coaster spun out of control.
