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.
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