My mom suggested I maintain a blog. She said, "That's what people do when they are going through the type thing you are going through". Yes, I suppose so. And maybe I should. Maybe my small thoughts and our big-to-us trials might provide some hope or instruction for someone else who finds themselves in the unenviable position we find ourselves in. Is that why we write during times of crisis, those, who like me, are extraverts? An extravert processes by externalizing thoughts and feelings and in so doing, he or she arranges them into some comprehensive grid. That grid provides comfort or understanding. Yet there are aspects of life that do not fit in tidy grids. Things that trouble the comforts of our convicted logic. Things that trouble even our faith. Yes, doubt. There are things that generate doubt. Should we be afraid of doubt? No. I say no. How can a faith be real lest it is tried and washed with doubt. There is blind faith which cannot tolerate the presence of doubt. There is faith tried, washed, firm and clean which has withstood the ugly things reality might toss its way. That is the kind of faith I need. That is the only faith I can carry. I am a person more comfortable in the woods of doubt than in the seas of faith. Sometimes faith is difficult and unnatural to me. Really, some folks are struck by my faith as I articulate our trials. But my faith does not sail smooth seas, free of the storms of doubt. In fact, I would say that all doubt is NOT equivalent of a storm. Sometimes it is essential. And I do not mean doubt in ourselves. We would all do well NOT to take ourselves so damn serious. Not to pride our petty opinions too darn much. We would all do well to doubt ourselves some more, but not the murderous doubt produced by the fears of perfectionism. Not a doubt that finds its roots in shame. No, a doubt which we use as a tool to really test where we stand. A tool. Yes, a tool. I believe we might be a bit healthier spiritually when we can see doubt not as an enemy but as a tool. But sometimes it does come as an attack. Sometimes it can be crippling. Those are the stormy waves of doubt, but it can still be a tool to faith. Those unable and unwilling to doubt can come off as intellectually arrogant, or insecure, paranoid at times, like a dictator so terrified of criticism he would command his critics be tortured rather than listen to their critique. Those types can never grow. So terrified something might puncture the petty fortress which gives them false personal value, they guard the sand castle of their faith with arms and terror. We are never impressed with the insecure. We can understand it. We can even empathize with it, but it never beckons us onward and upward.
But self-pity is my topic. Self-pity is the fastest road to bitterness. In self-pity gratitude becomes all but impossible. In perpetual self-pity we become the martyr, it becomes a role we play in life, something core to our identity. Those types you can never doubt, never disagree with, never reproach because their actions, however unsavory or even cruel they may be, are justified by the fact that they are the victim. I personally become bitter in no time flat when I allow myself to become the victim in my mind. The doors are shut tight to the light of gratitude. My faith is choked of, the guiding transformative faith that give me composure and security is bled by the martyr's role. Our great heros may have become martyrs, but they never saw themselves as victims. No, they carried a torch, they charged the ranks, they took heroic acts because they were NOT going to be the victim. They were unwilling to live as the victim. Unwilling to entertain self-pity. They committed daring acts which brought upon them genuine suffering but they did so of their own power, their own choice, their own volition and they did so understanding there may be consequence. These are the types we are prone to follow. It is those who say, "I did it because I chose to" rather than those who say, "I did it because they did it." In fact, I have known those whose actions are always a reaction. They are always justified by some injustice committed upon them. They bully because. They hurt because. Not because they choose to, but because he or she hurt me, he or she did not agree with me, he or she essentially made me do it. These folks loose their own identity. They cease to be a real person. That is self-pity in the end. It either ends in bitterness and isolation, or it ends with the extinguishment of self. If there is no power within them that chooses to do of their own volition but always acts because of the actions of another, there is no unique "I" in there any longer.
I watch people react to circumstance differently. I watch us all develop our roles. Roles that come to define us. He is the nice guy. He is the peacemaker. She is the complainer. She is the dependent. All these roles become core to the unstable identity. Our identity becomes more rooted in our role than in who and what we are. Again, a loss of self. And not the good loss. Not the loosing your life to save it. Voluntary surrender is one of the most brave and heroic acts one might commit. Letting go and letting God is one of the most life giving intentional acts one can ever commit. But letting Go and letting God does not allow for self-pity. Self-pity provides for determinism which becomes pessimism. These are the folks we hear complaining, the type we like to avoid. I can be prone to self-pity. I can even find some narcissistic fulfillment in playing the self-pity card. I want the attention. I deserved the attention, the consolation. I am suffering! Hear me roar! Feed me, feed my ego, feed my insecurity people! If I make things look terrible enough you might stop to offer me a drink. I might for that moment feel wanted. And feeling wanted I might feel whole. What kind of a person would I be? If I need you to make me whole I cannot help the hurting become whole. No, nothing but God alone, nothing. Nothing created can create whole. Only whole can fill as whole.
I pain for Nicole's suffering. At times I feel pity for her. As I should. And she may pity me at time. I don't think she does, but she may. But may I not pity myself. I can scarcely count the blessings. Render told me years ago when my life fell apart, my fake, painful, pretentious life of cards came tumbling down - he told me that God would restore what the locusts had eaten. Did he ever. Today my fields are far bigger, my flocks more full, my tent holds more love and more people than ever before. I was the martyr. I was the victim. You may not have known it, but it was central to who I was. I was MISERABLE. Today I can scarcely count the blessings. I can barely see and end to the sea of good that has been given me. And the best things I have have been given mind you. The best things I did not earn. The best kind of love is the love that is given, not the type given as a reward. Grace is not grace if it is payment for labor or loan.
Please, rejoice with us as we celebrate this beautiful period of our lives. A period when we see the hand of God at every turn. A time when grace is flowing like a raging river after torrential storms. A time when hope punctures darkness at every turn. I got to hold Eden, give her a bottle, stare into her loving eyes tonight. I was moved by the simple gift. I could not have seen it as a gift if I was the victim. I would have said in my own mind, "oh, my life is so hard, so much has been taken from me, we are alone in Ohio with no end in sight living in fear and unknown. What did I do to deserve this? I do not deserve this, I can only hold my little girl for moments in these difficult days. I am robbed of my little loves." But I have those bright beautiful eyes to look into, that wild hair and those willful ways. I have been given the gift of a beautiful garden, "Eden", and I did not earn her nor deserve her. I as daddy cannot earn her love. She gives it to me because I am daddy. What a treasure. What a gift. What a great thing I was able to hold her tonight. I feel my boys kicking as my hand lay on Nicole. They are kicking! You get that? That is a big deal. I have been given two living sons in their mother's womb. They should not be alive today. 20 years ago they would not have made it to March.
There is NO reason Bryce should be half as healthy as he is today. Please, if you hear nothing else, hear that. His defect is severe. His leak is massive. His heart should be far sicker than it is. The Doctor's have watched always expecting the worst. But, in spite of his anomaly, his heart is moderately sick. Only moderately. That means he has a good fighting chance. He is in the ring with gloves on and trained. He is not a lamb led to the slaughter. How many other babies with defects like his have held on this long, this strong, have tolerated the regurgitation this well? Not many that I have heard of. I have heard of hydrops and blue babies. Or River who is perfectly healthy. He is the donor twin. A family in PA just lost their donor two weeks after birth because his share of the placenta was too small for him to develop vitality. Some day I will have to count the blessings. Some day I might even make a list of the miracles we have seen. Heck, I was a drunk ass that ran my wife away. It's a miracle that I even have this battle with this beautiful bride to celebrate today. In the end, Bryce may not make it. We may have only hours with him, days, weeks. Who knows. Though I truly believe he will flourish and thrive. I do. I believe we will see him playing soccer one day on the CCS field. I believe that the hand that has held him this strong this long will lead him to the other side. I do. And I believe that without knowing it, he is going to walk around with a tattoo for all to see that says: "I am here because my God wanted to show off how big He really is." I wonder how many will be able to see that tattoo? Because it will be invisible to the naked eye. It will take the power of faith, grace, and gratitude to see, but I know many of us will see it and will be reminded every day that God is in the business of miracles, every freakin day. I believe we can see these invisible tattoos every day. You can see it every time you see me smile. My life today is God showing off.
Friday, April 26, 2013
Tuesday, April 23, 2013
Invisible Tatoos
My mom suggested I maintain a blog. She said, "That's what people do when they are going through the type thing you are going through". Yes, I suppose so. And maybe I should. Maybe my small thoughts and our big-to-us trials might provide some hope or instruction for someone else who finds themselves in the unenviable position we find ourselves in. Is that why we write during times of crisis, those, who like me, are extraverts? An extravert processes by externalizing thoughts and feelings and in so doing, he or she arranges them into some comprehensive grid. That grid provides comfort or understanding. Yet there are aspects of life that do not fit in tidy grids. Things that trouble the comforts of our convicted logic. Things that trouble even our faith. Yes, doubt. There are things that generate doubt. Should we be afraid of doubt? No. I say no. How can a faith be real lest it is tried and washed with doubt. There is blind faith which cannot tolerate the presence of doubt. There is faith tried, washed, firm and clean which has withstood the ugly things reality might toss its way. That is the kind of faith I need. That is the only faith I can carry. I am a person more comfortable in the woods of doubt than in the seas of faith. Sometimes faith is difficult and unnatural to me. Really, some folks are struck by my faith as I articulate our trials. But my faith does not sail smooth seas, free of the storms of doubt. In fact, I would say that all doubt is NOT equivalent of a storm. Sometimes it is essential. And I do not mean doubt in ourselves. We would all do well NOT to take ourselves so damn serious. Not to pride our petty opinions too darn much. We would all do well to doubt ourselves some more, but not the murderous doubt produced by the fears of perfectionism. Not a doubt that finds its roots in shame. No, a doubt which we use as a tool to really test where we stand. A tool. Yes, a tool. I believe we might be a bit healthier spiritually when we can see doubt not as an enemy but as a tool. But sometimes it does come as an attack. Sometimes it can be crippling. Those are the stormy waves of doubt, but it can still be a tool to faith. Those unable and unwilling to doubt can come off as intellectually arrogant, or insecure, paranoid at times, like a dictator so terrified of criticism he would command his critics be tortured rather than listen to their critique. Those types can never grow. So terrified something might puncture the petty fortress which gives them false personal value, they guard the sand castle of their faith with arms and terror. We are never impressed with the insecure. We can understand it. We can even empathize with it, but it never beckons us onward and upward.
But self-pity is my topic. Self-pity is the fastest road to bitterness. In self-pity gratitude becomes all but impossible. In perpetual self-pity we become the martyr, it becomes a role we play in life, something core to our identity. Those types you can never doubt, never disagree with, never reproach because their actions, however unsavory or even cruel they may be, are justified by the fact that they are the victim. I personally become bitter in no time flat when I allow myself to become the victim in my mind. The doors are shut tight to the light of gratitude. My faith is choked of, the guiding transformative faith that give me composure and security is bled by the martyr's role. Our great heros may have become martyrs, but they never saw themselves as victims. No, they carried a torch, they charged the ranks, they took heroic acts because they were NOT going to be the victim. They were unwilling to live as the victim. Unwilling to entertain self-pity. They committed daring acts which brought upon them genuine suffering but they did so of their own power, their own choice, their own volition and they did so understanding there may be consequence. These are the types we are prone to follow. It is those who say, "I did it because I chose to" rather than those who say, "I did it because they did it." In fact, I have known those whose actions are always a reaction. They are always justified by some injustice committed upon them. They bully because. They hurt because. Not because they choose to, but because he or she hurt me, he or she did not agree with me, he or she essentially made me do it. These folks loose their own identity. They cease to be a real person. That is self-pity in the end. It either ends in bitterness and isolation, or it ends with the extinguishment of self. If there is no power within them that chooses to do of their own volition but always acts because of the actions of another, there is no unique "I" in there any longer.
I watch people react to circumstance differently. I watch us all develop our roles. Roles that come to define us. He is the nice guy. He is the peacemaker. She is the complainer. She is the dependent. All these roles become core to the unstable identity. Our identity becomes more rooted in our role than in who and what we are. Again, a loss of self. And not the good loss. Not the loosing your life to save it. Voluntary surrender is one of the most brave and heroic acts one might commit. Letting go and letting God is one of the most life giving intentional acts one can ever commit. But letting Go and letting God does not allow for self-pity. Self-pity provides for determinism which becomes pessimism. These are the folks we hear complaining, the type we like to avoid. I can be prone to self-pity. I can even find some narcissistic fulfillment in playing the self-pity card. I want the attention. I deserved the attention, the consolation. I am suffering! Hear me roar! Feed me, feed my ego, feed my insecurity people! If I make things look terrible enough you might stop to offer me a drink. I might for that moment feel wanted. And feeling wanted I might feel whole. What kind of a person would I be? If I need you to make me whole I cannot help the hurting become whole. No, nothing but God alone, nothing. Nothing created can create whole. Only whole can fill as whole.
I pain for Nicole's suffering. At times I feel pity for her. As I should. And she may pity me at time. I don't think she does, but she may. But may I not pity myself. I can scarcely count the blessings. Render told me years ago when my life fell apart, my fake, painful, pretentious life of cards came tumbling down - he told me that God would restore what the locusts had eaten. Did he ever. Today my fields are far bigger, my flocks more full, my tent holds more love and more people than ever before. I was the martyr. I was the victim. You may not have known it, but it was central to who I was. I was MISERABLE. Today I can scarcely count the blessings. I can barely see and end to the sea of good that has been given me. And the best things I have have been given mind you. The best things I did not earn. The best kind of love is the love that is given, not the type given as a reward. Grace is not grace if it is payment for labor or loan.
Please, rejoice with us as we celebrate this beautiful period of our lives. A period when we see the hand of God at every turn. A time when grace is flowing like a raging river after torrential storms. A time when hope punctures darkness at every turn. I got to hold Eden, give her a bottle, stare into her loving eyes tonight. I was moved by the simple gift. I could not have seen it as a gift if I was the victim. I would have said in my own mind, "oh, my life is so hard, so much has been taken from me, we are alone in Ohio with no end in sight living in fear and unknown. What did I do to deserve this? I do not deserve this, I can only hold my little girl for moments in these difficult days. I am robbed of my little loves." But I have those bright beautiful eyes to look into, that wild hair and those willful ways. I have been given the gift of a beautiful garden, "Eden", and I did not earn her nor deserve her. I as daddy cannot earn her love. She gives it to me because I am daddy. What a treasure. What a gift. What a great thing I was able to hold her tonight. I feel my boys kicking as my hand lay on Nicole. They are kicking! You get that? That is a big deal. I have been given two living sons in their mother's womb. They should not be alive today. 20 years ago they would not have made it to March.
There is NO reason Bryce should be half as healthy as he is today. Please, if you hear nothing else, hear that. His defect is severe. His leak is massive. His heart should be far sicker than it is. The Doctor's have watched always expecting the worst. But, in spite of his anomaly, his heart is moderately sick. Only moderately. That means he has a good fighting chance. He is in the ring with gloves on and trained. He is not a lamb led to the slaughter. How many other babies with defects like his have held on this long, this strong, have tolerated the regurgitation this well? Not many that I have heard of. I have heard of hydrops and blue babies. Or River who is perfectly healthy. He is the donor twin. A family in PA just lost their donor two weeks after birth because his share of the placenta was too small for him to develop vitality. Some day I will have to count the blessings. Some day I might even make a list of the miracles we have seen. Heck, I was a drunk ass that ran my wife away. It's a miracle that I even have this battle with this beautiful bride to celebrate today. In the end, Bryce may not make it. We may have only hours with him, days, weeks. Who knows. Though I truly believe he will flourish and thrive. I do. I believe we will see him playing soccer one day on the CCS field. I believe that the hand that has held him this strong this long will lead him to the other side. I do. And I believe that without knowing it, he is going to walk around with a tattoo for all to see that says: "I am here because my God wanted to show off how big He really is." I wonder how many will be able to see that tattoo? Because it will be invisible to the naked eye. It will take the power of faith, grace, and gratitude to see, but I know many of us will see it and will be reminded every day that God is in the business of miracles, every freakin day. I believe we can see these invisible tattoos every day. You can see it every time you see me smile. My life today is God showing off.
But self-pity is my topic. Self-pity is the fastest road to bitterness. In self-pity gratitude becomes all but impossible. In perpetual self-pity we become the martyr, it becomes a role we play in life, something core to our identity. Those types you can never doubt, never disagree with, never reproach because their actions, however unsavory or even cruel they may be, are justified by the fact that they are the victim. I personally become bitter in no time flat when I allow myself to become the victim in my mind. The doors are shut tight to the light of gratitude. My faith is choked of, the guiding transformative faith that give me composure and security is bled by the martyr's role. Our great heros may have become martyrs, but they never saw themselves as victims. No, they carried a torch, they charged the ranks, they took heroic acts because they were NOT going to be the victim. They were unwilling to live as the victim. Unwilling to entertain self-pity. They committed daring acts which brought upon them genuine suffering but they did so of their own power, their own choice, their own volition and they did so understanding there may be consequence. These are the types we are prone to follow. It is those who say, "I did it because I chose to" rather than those who say, "I did it because they did it." In fact, I have known those whose actions are always a reaction. They are always justified by some injustice committed upon them. They bully because. They hurt because. Not because they choose to, but because he or she hurt me, he or she did not agree with me, he or she essentially made me do it. These folks loose their own identity. They cease to be a real person. That is self-pity in the end. It either ends in bitterness and isolation, or it ends with the extinguishment of self. If there is no power within them that chooses to do of their own volition but always acts because of the actions of another, there is no unique "I" in there any longer.
I watch people react to circumstance differently. I watch us all develop our roles. Roles that come to define us. He is the nice guy. He is the peacemaker. She is the complainer. She is the dependent. All these roles become core to the unstable identity. Our identity becomes more rooted in our role than in who and what we are. Again, a loss of self. And not the good loss. Not the loosing your life to save it. Voluntary surrender is one of the most brave and heroic acts one might commit. Letting go and letting God is one of the most life giving intentional acts one can ever commit. But letting Go and letting God does not allow for self-pity. Self-pity provides for determinism which becomes pessimism. These are the folks we hear complaining, the type we like to avoid. I can be prone to self-pity. I can even find some narcissistic fulfillment in playing the self-pity card. I want the attention. I deserved the attention, the consolation. I am suffering! Hear me roar! Feed me, feed my ego, feed my insecurity people! If I make things look terrible enough you might stop to offer me a drink. I might for that moment feel wanted. And feeling wanted I might feel whole. What kind of a person would I be? If I need you to make me whole I cannot help the hurting become whole. No, nothing but God alone, nothing. Nothing created can create whole. Only whole can fill as whole.
I pain for Nicole's suffering. At times I feel pity for her. As I should. And she may pity me at time. I don't think she does, but she may. But may I not pity myself. I can scarcely count the blessings. Render told me years ago when my life fell apart, my fake, painful, pretentious life of cards came tumbling down - he told me that God would restore what the locusts had eaten. Did he ever. Today my fields are far bigger, my flocks more full, my tent holds more love and more people than ever before. I was the martyr. I was the victim. You may not have known it, but it was central to who I was. I was MISERABLE. Today I can scarcely count the blessings. I can barely see and end to the sea of good that has been given me. And the best things I have have been given mind you. The best things I did not earn. The best kind of love is the love that is given, not the type given as a reward. Grace is not grace if it is payment for labor or loan.
Please, rejoice with us as we celebrate this beautiful period of our lives. A period when we see the hand of God at every turn. A time when grace is flowing like a raging river after torrential storms. A time when hope punctures darkness at every turn. I got to hold Eden, give her a bottle, stare into her loving eyes tonight. I was moved by the simple gift. I could not have seen it as a gift if I was the victim. I would have said in my own mind, "oh, my life is so hard, so much has been taken from me, we are alone in Ohio with no end in sight living in fear and unknown. What did I do to deserve this? I do not deserve this, I can only hold my little girl for moments in these difficult days. I am robbed of my little loves." But I have those bright beautiful eyes to look into, that wild hair and those willful ways. I have been given the gift of a beautiful garden, "Eden", and I did not earn her nor deserve her. I as daddy cannot earn her love. She gives it to me because I am daddy. What a treasure. What a gift. What a great thing I was able to hold her tonight. I feel my boys kicking as my hand lay on Nicole. They are kicking! You get that? That is a big deal. I have been given two living sons in their mother's womb. They should not be alive today. 20 years ago they would not have made it to March.
There is NO reason Bryce should be half as healthy as he is today. Please, if you hear nothing else, hear that. His defect is severe. His leak is massive. His heart should be far sicker than it is. The Doctor's have watched always expecting the worst. But, in spite of his anomaly, his heart is moderately sick. Only moderately. That means he has a good fighting chance. He is in the ring with gloves on and trained. He is not a lamb led to the slaughter. How many other babies with defects like his have held on this long, this strong, have tolerated the regurgitation this well? Not many that I have heard of. I have heard of hydrops and blue babies. Or River who is perfectly healthy. He is the donor twin. A family in PA just lost their donor two weeks after birth because his share of the placenta was too small for him to develop vitality. Some day I will have to count the blessings. Some day I might even make a list of the miracles we have seen. Heck, I was a drunk ass that ran my wife away. It's a miracle that I even have this battle with this beautiful bride to celebrate today. In the end, Bryce may not make it. We may have only hours with him, days, weeks. Who knows. Though I truly believe he will flourish and thrive. I do. I believe we will see him playing soccer one day on the CCS field. I believe that the hand that has held him this strong this long will lead him to the other side. I do. And I believe that without knowing it, he is going to walk around with a tattoo for all to see that says: "I am here because my God wanted to show off how big He really is." I wonder how many will be able to see that tattoo? Because it will be invisible to the naked eye. It will take the power of faith, grace, and gratitude to see, but I know many of us will see it and will be reminded every day that God is in the business of miracles, every freakin day. I believe we can see these invisible tattoos every day. You can see it every time you see me smile. My life today is God showing off.
Monday, April 22, 2013
More Clarity, More Confusion
What a day! But in the end, even though we have been admitted to the hospital for monitored care, we are feeling pretty upbeat! During the ultrasound, Dr. Habli could not find a membrane that separates the boys and it did appear from the fluid arrangement that their membrane had ruptured and they were now Mono-mono, or, one placenta, one sac. This is a most complicated twin arrangement aside from the TTTS hurdle we have already jumped over because the boys can become entangled, their cords entangled and they can even harm one another or one another's cord. The sac that holds the boys had also separated from the uterine wall - there was no attachment. This alone was enough to prevent us from traveling home, but with the potential entanglement we now require very frequent monitoring. So, that is the bad news. But there is good news!
Bryce's heart is functioning well. It is not so enlarged that he is in imminent danger or his lung may not develop. He is tolerating the severe tricuspid leakage well and really holding strong. That has been the trend. But the good news came when the team decided to call his abnormality Displastic Tricuspid valve rather than Epstein's Anomaly. Functionally there is not much difference and the two are related, but the outcomes with Epstein's tend to be more grim as is more likely to trigger other heart malfunctions. There is even a chance that Bryce may NOT require surgery. After birth, when some of the tremendous pressure in his right ventricle is relieved, the leak may slow, it may virtually halt. It may not. It may go into rabid decline but it may do that at any moment, but it has tolerated this condition pretty well for a few months now so we can take heart that it may continue to do so. If the leak does not lessen he will require surgery, but they may be able to put off the procedure to attempt a repair on the valve until he is hearier and more stable, as in, he may be able to come home before intervention is required. There is a real possibility that immediate intervention may be required or that they will have to open the heart and reconstruct the valve before he is ever discharged from the CICU. While it's still murky, the possible positive outcomes did look much brighter after this fetal Echo.
Finally, because Bryce is stable now and because Cincinnati has the capacity to intervene post-delivery at any time and they have dealt with cases similar, though, according to Dr. Lim, they have not had a case exactly like ours with all the complicating factors and this specific heart defect, and because it is much closer to home and because we know this team, they know us and our boys and this place is ranked #3 in the U.S., we will most likely deliver here. There is a chance we may delivery in Nashville to be closer to home, but Dr. Lim is going to have some long talks with Vandy about their experience (if they have any at all) in emergent reconstructive valve surgery before we look seriously at that option. If they can convince him that they are fully confident in handling our care, we will certainly consider a transfer so we might deliver closer to home. There is also a chance, though maybe slight that the sac could reattach to the uterine wall and they may find that the membrane is still there keeping them apart only they could not see it today. If that is the case, we will be able to return home for a week or so before we have to hunker down where we plan to delivery at around 31 weeks.
I will be traveling home tomorrow to gather some stuff, knock out some work, tie up some loose ends with the construction projects around the house and then bring the kids up for a visit on Thursday afternoon before returning them to Chattanooga Saturday in time to take my girls (sans Eden) to the Daddy Daughter Dance at CCS Saturday night. Nicole has had a really rough haul. She has also endured some very stressful and difficult events outside of pregnancy challenges, but her spirit remains sturdy and committed. She has demonstrated uncommon strength and endurance. In the end, I feel more confident than ever before that in the end, both of our boys are going to be okay. What a journey so far. So many trials, yet, so many blessings.
Bryce's heart is functioning well. It is not so enlarged that he is in imminent danger or his lung may not develop. He is tolerating the severe tricuspid leakage well and really holding strong. That has been the trend. But the good news came when the team decided to call his abnormality Displastic Tricuspid valve rather than Epstein's Anomaly. Functionally there is not much difference and the two are related, but the outcomes with Epstein's tend to be more grim as is more likely to trigger other heart malfunctions. There is even a chance that Bryce may NOT require surgery. After birth, when some of the tremendous pressure in his right ventricle is relieved, the leak may slow, it may virtually halt. It may not. It may go into rabid decline but it may do that at any moment, but it has tolerated this condition pretty well for a few months now so we can take heart that it may continue to do so. If the leak does not lessen he will require surgery, but they may be able to put off the procedure to attempt a repair on the valve until he is hearier and more stable, as in, he may be able to come home before intervention is required. There is a real possibility that immediate intervention may be required or that they will have to open the heart and reconstruct the valve before he is ever discharged from the CICU. While it's still murky, the possible positive outcomes did look much brighter after this fetal Echo.
Finally, because Bryce is stable now and because Cincinnati has the capacity to intervene post-delivery at any time and they have dealt with cases similar, though, according to Dr. Lim, they have not had a case exactly like ours with all the complicating factors and this specific heart defect, and because it is much closer to home and because we know this team, they know us and our boys and this place is ranked #3 in the U.S., we will most likely deliver here. There is a chance we may delivery in Nashville to be closer to home, but Dr. Lim is going to have some long talks with Vandy about their experience (if they have any at all) in emergent reconstructive valve surgery before we look seriously at that option. If they can convince him that they are fully confident in handling our care, we will certainly consider a transfer so we might deliver closer to home. There is also a chance, though maybe slight that the sac could reattach to the uterine wall and they may find that the membrane is still there keeping them apart only they could not see it today. If that is the case, we will be able to return home for a week or so before we have to hunker down where we plan to delivery at around 31 weeks.
I will be traveling home tomorrow to gather some stuff, knock out some work, tie up some loose ends with the construction projects around the house and then bring the kids up for a visit on Thursday afternoon before returning them to Chattanooga Saturday in time to take my girls (sans Eden) to the Daddy Daughter Dance at CCS Saturday night. Nicole has had a really rough haul. She has also endured some very stressful and difficult events outside of pregnancy challenges, but her spirit remains sturdy and committed. She has demonstrated uncommon strength and endurance. In the end, I feel more confident than ever before that in the end, both of our boys are going to be okay. What a journey so far. So many trials, yet, so many blessings.
Thursday, April 18, 2013
Blatant Request
I received a call tonight from one of the two fetal/newborn cardiac surgeons at Boston Harvard Children's hospital this evening. It was the most informative conversation I have had yet on what is going on with Bryce, what possible treatment options are, and what his chances are. It was on the one hand a very sober and even difficult conversation, but the very fact that this man called me on his commute home seemed to eclipse the emotion of fear with one of hope. It would take to long and bore many to tears to list out everything we discussed, but I did want to convey our plea for your prayer as we face some very difficult choices right before us. The difficulty of those possibilities was clear as I relayed things to Nicole and she melted into tears. This is a rather long list of explicit requests, but it is pretty complete as well. Your love and your prayers have upheld us. We feel that many of you, our friends and our faith family have a real important part in the lives of our boys, and in our family. Our children have seen some very good things on account of some very good and giving people. We remain so grateful for the people in our lives, but most importantly, for a loving God who we can know and trust very personally.
1) He made it clear that a Chattanooga delivery was simply not an option if we had any hope of saving Bryce, but even our Chattanooga care takers would admit that I believe, at least Dr. Scott said he had been trying to prepare us for that over the past month or so.
2) The birth is likely to take place in Boston or Cincinnati and we will have to make that decision this coming week.
3) While we would prefer Cincinnati because of its familiarity and proximity, we will simply chose the center with the greatest history in dealing with this very rare and difficult sort of situation. Boston has been a pioneer with moderate to severe Epstein's Anomaly cases and he even conceded that though they had the longest track record in handling these rare cases, they had only cemented a treatment plan over the past two years. On the one hand it complicates things that we have TTTS twins, twins in general, but on the other he said it may play in our favor because he said twins are more durable early on than singletons. They tend to be tougher he said also suggesting that 32 weeks a good gestation for a twin but a very risky delivery date for a singleton.
4) We will have a consult with Dr. Lim who performed the laser surgery in Cincinnati Monday evening after our Fetal Echo and full growth exam. This conversation should be instrumental in helping us choose what to do. However, the Boston team is going to review the Echo on Tuesday and consult with us that evening. So we should hammer out a plan of attack by the week's end.
5) We will have to be where we will delivery in 2-2.5 weeks so we do not have much time.
6) Bryce will have to stay there most likely for 2-4 months. One of us will have to be there in town at all times so this will be a very difficult period for our family and I will simply have to travel back and forth for work though Nicole should be allowed some trips home as well.
7) Dr. Rathod at Harvard said they would do everything possible to save Bryce if we choose Boston, regardless of how severely sick his heart may be, but that the outlook for him was not superb. Meaning, based upon what we believe we know now, stats are not as favorable as the stats for surviving TTTS were with Laser. He said if they determine that his Epstein's is severe, he would have only a 10-20% chance of survival but he believes it is a moderately severe case which does improve odds and outlook.
8) We are going to try to have Nicole's airway inspected while we are in Cincinnati and we pray that the stenosis has not closed too much.
9) I have entirely forgotten till just now that we also face a surgery in Cincinnati post delivery on Nicole's trachea to permanently fix the closure issue by removing the affected portion of her airway and pulling the remainder together.
10) We have had major construction at our home and this will have to proceed while we are away and I will have to make many final decisions in regards to elements of construction before we have to leave.
11) I will have to figure out a routine so that I can focus and work (on business) while I am away and stay in contact with our team here as we rush into pool season (the worst time for me to leave).
12) It will be very difficult for us emotionally to be apart from our support system and family, especially our children so much. It will also be difficult for our kids. But they are strong, great kids that have all committed themselves to doing what we must as a team to save our boys. They already love their two new brothers very much.
However, at this point we have NO certainty of what really lay ahead and what our treatment plan will be. We have options, even probabilities, but no certainty. We are committed to doing whatever is most likely to render a positive outcome, even if our chances turn slim, Dr. Rathod (if they take our care) said they would do all that could be done to the very end. But I remain optimistic that this remarkable, strong, durable, beautiful son of ours is going to make it. I just believe it.
1) He made it clear that a Chattanooga delivery was simply not an option if we had any hope of saving Bryce, but even our Chattanooga care takers would admit that I believe, at least Dr. Scott said he had been trying to prepare us for that over the past month or so.
2) The birth is likely to take place in Boston or Cincinnati and we will have to make that decision this coming week.
3) While we would prefer Cincinnati because of its familiarity and proximity, we will simply chose the center with the greatest history in dealing with this very rare and difficult sort of situation. Boston has been a pioneer with moderate to severe Epstein's Anomaly cases and he even conceded that though they had the longest track record in handling these rare cases, they had only cemented a treatment plan over the past two years. On the one hand it complicates things that we have TTTS twins, twins in general, but on the other he said it may play in our favor because he said twins are more durable early on than singletons. They tend to be tougher he said also suggesting that 32 weeks a good gestation for a twin but a very risky delivery date for a singleton.
4) We will have a consult with Dr. Lim who performed the laser surgery in Cincinnati Monday evening after our Fetal Echo and full growth exam. This conversation should be instrumental in helping us choose what to do. However, the Boston team is going to review the Echo on Tuesday and consult with us that evening. So we should hammer out a plan of attack by the week's end.
5) We will have to be where we will delivery in 2-2.5 weeks so we do not have much time.
6) Bryce will have to stay there most likely for 2-4 months. One of us will have to be there in town at all times so this will be a very difficult period for our family and I will simply have to travel back and forth for work though Nicole should be allowed some trips home as well.
7) Dr. Rathod at Harvard said they would do everything possible to save Bryce if we choose Boston, regardless of how severely sick his heart may be, but that the outlook for him was not superb. Meaning, based upon what we believe we know now, stats are not as favorable as the stats for surviving TTTS were with Laser. He said if they determine that his Epstein's is severe, he would have only a 10-20% chance of survival but he believes it is a moderately severe case which does improve odds and outlook.
8) We are going to try to have Nicole's airway inspected while we are in Cincinnati and we pray that the stenosis has not closed too much.
9) I have entirely forgotten till just now that we also face a surgery in Cincinnati post delivery on Nicole's trachea to permanently fix the closure issue by removing the affected portion of her airway and pulling the remainder together.
10) We have had major construction at our home and this will have to proceed while we are away and I will have to make many final decisions in regards to elements of construction before we have to leave.
11) I will have to figure out a routine so that I can focus and work (on business) while I am away and stay in contact with our team here as we rush into pool season (the worst time for me to leave).
12) It will be very difficult for us emotionally to be apart from our support system and family, especially our children so much. It will also be difficult for our kids. But they are strong, great kids that have all committed themselves to doing what we must as a team to save our boys. They already love their two new brothers very much.
However, at this point we have NO certainty of what really lay ahead and what our treatment plan will be. We have options, even probabilities, but no certainty. We are committed to doing whatever is most likely to render a positive outcome, even if our chances turn slim, Dr. Rathod (if they take our care) said they would do all that could be done to the very end. But I remain optimistic that this remarkable, strong, durable, beautiful son of ours is going to make it. I just believe it.
Wednesday, April 17, 2013
Bryce and River 4-17
Dear friends,
We will return to Cincinnati this Monday for full growth exams on the boys, another extensive Echo Cardiagram and a consult with Dr. Lim (the man that performed the TTTS surgery) and a cardiology team member. Because there has been no slowing in the tricuspid regurgitation following the laser surgery now two months ago, and because of the Echo observations by the Cincinnati Cardiologists in our last exam, we are almost certain that Bryce has a rare condition known as Epstein's Anomaly. And though the leakage has remained severe, his heart has been holding up well considering. It now accounts for 50% of his chest cavity, whereas River's heart is a normal 30%. One danger is if the heart enlarges to 65% or above, the lungs are unlikely to develop adequately because they are more or less crowded out by the enlarged heart. In his case, the right Atrium is the chamber most affected and most significantly enlarged. We are greatful that he has held this strong this long. And though we are only at 28 weeks, we are considered late term by the Fetal Care Team because most TTTS twins do not make it past 32 weeks before delivery. In the case of Bryce, if his heart was mending laser post-op, it would be ideal to keep him in there as long as possible, and while the womb is still the best and safest place for both boys to be right now, staying in the womb has not and is not reversing the damage caused by the congenital defect. We will continue to have Echo's in Chattanooga twice a week after our return from Cincinnati provided we return, but we also have every reason to believe we are in the last four weeks of this pregnancy.
Finally, there will be some debate on how and when to surgically intervene with Bryce post-delivery. At this point, it appears he will require surgical intervention sooner rather than later because of the severity of the problem, but the earliest any surgical intervention might occur would be at around 5.5 pounds and that is only to manipulate the flaps of the valve in hopes of improving their performance in closing. Mechanical valves do not become an option until the teen years. So far, his heart has not been growing rapidly. That is a huge blessing but his arrhythmia has increased in frequency, which is disconcerting, but there is also no sign of congestive heart failure or fetal hydrops - which means that blood is not pooling or backing up. The fact that he has been holding so strong with his condition is a HUGE answer to prayer, HUGE! We are so grateful for your prayer and support and for the Lord's work. Please continue to hold up both of our boys, but especially Bryce, as well as Nicole as it seems we are turning into the final stretch of this phase in their lives.
We will return to Cincinnati this Monday for full growth exams on the boys, another extensive Echo Cardiagram and a consult with Dr. Lim (the man that performed the TTTS surgery) and a cardiology team member. Because there has been no slowing in the tricuspid regurgitation following the laser surgery now two months ago, and because of the Echo observations by the Cincinnati Cardiologists in our last exam, we are almost certain that Bryce has a rare condition known as Epstein's Anomaly. And though the leakage has remained severe, his heart has been holding up well considering. It now accounts for 50% of his chest cavity, whereas River's heart is a normal 30%. One danger is if the heart enlarges to 65% or above, the lungs are unlikely to develop adequately because they are more or less crowded out by the enlarged heart. In his case, the right Atrium is the chamber most affected and most significantly enlarged. We are greatful that he has held this strong this long. And though we are only at 28 weeks, we are considered late term by the Fetal Care Team because most TTTS twins do not make it past 32 weeks before delivery. In the case of Bryce, if his heart was mending laser post-op, it would be ideal to keep him in there as long as possible, and while the womb is still the best and safest place for both boys to be right now, staying in the womb has not and is not reversing the damage caused by the congenital defect. We will continue to have Echo's in Chattanooga twice a week after our return from Cincinnati provided we return, but we also have every reason to believe we are in the last four weeks of this pregnancy.
Finally, there will be some debate on how and when to surgically intervene with Bryce post-delivery. At this point, it appears he will require surgical intervention sooner rather than later because of the severity of the problem, but the earliest any surgical intervention might occur would be at around 5.5 pounds and that is only to manipulate the flaps of the valve in hopes of improving their performance in closing. Mechanical valves do not become an option until the teen years. So far, his heart has not been growing rapidly. That is a huge blessing but his arrhythmia has increased in frequency, which is disconcerting, but there is also no sign of congestive heart failure or fetal hydrops - which means that blood is not pooling or backing up. The fact that he has been holding so strong with his condition is a HUGE answer to prayer, HUGE! We are so grateful for your prayer and support and for the Lord's work. Please continue to hold up both of our boys, but especially Bryce, as well as Nicole as it seems we are turning into the final stretch of this phase in their lives.
Monday, April 1, 2013
A child is forever yours even when they are not with you
Today was a bumpy day. Today being the first weekday after our visit Friday to Cincinnati. There in Cincinnati we had a consult with both the fetal care doctor as well as a cardiologist after the echo cardiagram. Dr. Habbib, of the fetal care team spent around ten minutes describing in rather stark terms the challenges we faced as well as the challenges they would have in determining what if anything could be done to prevent Bryce’s decline should it turn in that direction. She had no statistical information to give us on what his chances were for survival because they had only dealt with four cases of TTTS over the years where the recipient twin demonstrated a congenital heart defect that did not respond or mend after the TTTS was corrected. Those four cases were each very different. And while they are still not certain this valve defect is not a malady in response to the strain of TTTS, the cardiologists felt that they could say with some degree of certainty that his issue would not follow the more common coarse of healing in post-op TTTS recipient twins. She said over and over that we may loose him and that there would possibly be nothing anyone could do in order to prevent that. So, around the time she had me in tears, she took a bit of a more optimistic turn and also said that if his heart continues to hold its ground we will have reason to be encouraged and that she really thought that we would have two beautiful boys in our arms just five to seven weeks from now.
Then Nicole had an appointment with Dr. Kipikasa, who is the heart specialist with the high risk group that Dr. Lam is also a part of. He has taken over our case here in Chattanooga. He was more baffled and more troubled today after reviewing the findings from Cincinnati and told Nicole he wanted her back on Thursday of this week and that he and Dr. Harnsberger would discuss the possibility of hospitalized bed rest from this point forward so that Bryce could be monitored constantly. And though there is nothing that might be done for him in Chattanooga should he need intervention, the hope would be to catch something the moment we need to react and get us where those who have dealt with this might be, in our case, Cincinnati. However, after he and Dr. Scott spoke today, even prior to Scott’s review of the faxed report from the Fetal Care Center, they decided against that coarse of action at this point in the game and instead will be conducting an ultrasound once a week as well as an Echo on Bryce at Erlanger once a week with another visit to Cincinnati three weeks out. Dr. Harnsberger said that should it appear that Bryce’s heart had gone into rapid decline, we will have to make a choice to take the boys early in hopes that something could be done to stabilize Bryce outside the womb. However, if we are confronted with that decision just weeks from now (we are at 25 now), say around week 28, the chances of Bryce’s survival would be very small and we would be borrowing trouble for River. However, on the other hand, if Bryce’s heart goes into failure, it can trigger a rapid reaction in the donor twin as well which may threaten River’s life. It may not. They have no way of knowing how the manner that they are interconnected might complicate the survivor should one be lost in the womb. But this is something we are not focusing on because we are keeping our eyes on getting Bryce out alive and bringing him along until a more permanent repair, ie, a valve replacement can be performed. He also said that they may recommend delivery in Cincinnati should the boys have to be taken early but if we can make it to 32 weeks, they will feel more comfortable delivering here in Chattanooga. Everyone remains very concerned that Bryce’s heart may go into rabid failure at any time, but in the four weeks since the TTTS laser procedure, his heart has not enlarged much more. It currently occupies 44% of his chest cavity. The normal proportion is 33% so while 44% certainly demonstrates an enlarged heart, it has only increased one percentage point in the past four weeks and it is not so large that it may prevent the lungs from developing.
Today was certainly agonizing. After Nicole called upon leaving the appointment with Dr. Kipikasa to the time that Scott was able to call me after their consult felt like days and I had to fight the tears and mentally focus my mind on the work before me to pass the time, remain productive, and hold it together. It came as more shocking considering how I felt leaving Cincinnati on Friday. For the first time since we were diagnosed with TTTS I felt a believe in my core, a sort of peace that we were going to make it. I knew there would possibly be a fight even after delivery, and we may have issues to contend with for years, but I felt that we were going to have both our boys to hold and to kiss.
I have discovered that going through these tense periods is like living in a pressure-cooker, one which pushes all my insecurities to the fore and taunts any enlightened spiritual state I might posses in tranquility. That said, too much tranquility can also challenge my spiritual focus because my personality thrives on change and challenge. The coasting periods, even the waiting and setting aside to wait periods more significantly challenge my spiritual focus and connection than does movement and even some element of chaos. But all the uncertainty, the intensity of emotion, the depth of fear, the lack of any control, and the unpredictable nature of each day have introduced new challenges that have directed my mind in a million directions. A million directions at times except the very direction I need to be directing it. At times. At times I feel anger and frustration. At times I feel taxed and bored. At times I feel like I want the noise to tone down, like I even want to just rest, with nothing, and have a moment’s peace. Yet there is no time to rest. There is no time to lay down arms. I cannot imagine sitting all winter in fox holes in the forest of France waiting on periodic bombardments holding my gun, waiting for orders, but in some small way I am able to imagine something of what it must be like now. Not even close, but symbolically in that direction. And the battle within can be intense, with both defeat as well as victory.
The battle within pits self, ego, flesh whatever you want to call it against the spirit. In the spirit I find peace in letting go. I hear things and I move with things and I stand as a rock where I need to stand and run like a river when I need to run. In the spirit I take joy in setting myself aside each and every moment to do what has to be done for those I love. I case you have not noticed, I have a few dependents, and with a wife on bed rest, I have a good list of to-dos added to my to-dos. I cannot afford to take “me” time at this point in my life. I just took the kids to Florida, myself and my kids less Eden, without Nicole, and I have never needed a vacation after my vacation quite as much as I needed on this time. I came back out of balance, as if I had been overtaxed by having to put myself aside to often, too rigorously. I came back in tension and in that tension is where my demons may lay. That tension between self and spirit. Self was taxed. It was tired. It wanted for me, about me, what it wanted. It wanted to treat me. It wanted to even deliver me. The spirit was full of a wonderful time with my beloveds. It was filled up with their love and my love for them. It was celebrating great people, good friends, and incredible blessings. The spirit was relishing incredible gratitude. The self was anxious and found things somewhat obnoxious. It did not want to hear another petty childish argument. It did not want to hear Daddy again, or cook another meal, or do more dishes or stay up late cleaning the kitchen after getting all the kids to bed. This is not schizophrenia. This is the common struggle of flesh against spirit.
In the me, in the flesh I not only want delivery on my terms, in my way, even escape if that is how it might come, but I might even crave that which is can be my undoing in during these extravagant trials. My mind may even wander to what I might really do for me that would be particularly unhealthy for myself and my family. In this state of waiting, of a wife on bedrest, pelvic rest, and even as we deal with demons of our past together in a painful way, painful parts of our past, I want something now to give me a break and make me feel wanted, empowered – whatever the ego based need may be at the moment. Yet in the spirit I am united to the All-knowing. I am in relation to the All-Powerful. I am speaking with the All-Mighty. I am in the hands of the one that hold my boy Bryce and my baby River. In the spirit I know the end from the beginning. I know that it might not go my way, but it does go the best way. I know that my challenges are compliments and my trials are the fertile fields of growth. In the spirit I see each pleasure, each look of love and little shared treasure as a grace I do not deserve but have been invited to enjoy and even celebrate. In the flesh nothing satisfies. I might bite the hand that feeds me. Turn from protecting those that love me the most. In the flesh I rarely sip up fresh air and early morning sun as a poetic gift from God. I simply calculate my designs on the day and become irritated and frustrated when my designs are thwarted. Today was the birthday of my ten year old Treasure Elise. In my flesh I might even see her as an inconvenience rather than a gift. Such are the dangers of wallowing in the flesh. Such is the stark contrast between the relics of the sin nature and the self that has been put to death and resurrected anew. I am an unpleasant person that can become intolerant or impatient when I have the “I” at the forefront. By contrast, when I set that “I” aside and allow the spirit to live through me, I can even be surprised at what a good person I can be.
I believe we have periods of our life which see one side fed more than the other. We have spiritual highs and spiritual lows. But I believe there are strands of time which taken on the whole seem more tainted with a day to day struggle against the ugly bits of the old self and strands of time that are overwhelmingly delightful because they are marked by a delectable freedom in letting go and letting God. In living by the spirit. I believe there can also be times of battle, times where a palpable conflict seems to wage within us and often times we can find ourselves at these pressing points when we are in the pressure cooking moments of life. I also believe that we can neither will nor work ourselves into this state of spiritual connection. It does not come from concentration or devotion time or mental gymnastics or yoga. All those things can help and serve a positive purpose in keeping us focused and moving forward, but they cannot be the glue that binds us to the divine. The only thing I have ever uncovered for connecting myself to the infinite presence of God is letting go, utterly and completely letting go and walking well beyond myself and my ideas in my little plat of the earth into the path chosen for me. It is as if I am day to day receiving an invitation into the courts of Heaven, but I can only go on the condition that I go with no personal conditions. I cannot go toting in the flesh, the me, the what I want. If I do, I cannot actually be in the courts of Heaven for I cannot see that which would take my mind so far off the petty parts and wants of me and allow me to understand where I am, what glimpse I have been shown. The constant precondition to connection is surrender. It is becoming like water, like the River that submissively follows the path laid out for it but in so doing overcomes the greatest obstacles and literally moves and carves gorges, valleys, mountains. That is the power of River to me. That is why his name means so much, because in the spirit that is how I flow. And when I flow like the River, I am lifted up as I am in Bryce. Few other places on earth knock me so hard to my knees in worship. Few other silent spots in creation sing so loudly in the courts of heaven to me. This is my walk in the spirit. These are the names of my boys. These boys will forever be ours and forever be with us even if God choses to take one away far sooner than I might want, they are in my heart and in my life and they will never leave and that will never change. I love you River and Bryce, but you are not mine, I hold you with an open hand and I plead that God may lend you to us for a good time, a lifetime would be ideal.
Subscribe to:
Posts (Atom)