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.  

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. 

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.

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.  

Watch for self-hate when Grace shines in uncomfortable corners

We have been so blessed and overwhelmed by the love and support of our extended church family in this period.  Prayers, calls, emails, drop-ins, meals, cleaning, kid-care, carpool, you name it - I am quite sure we would have fallen apart within a week of our return if it were not for our brother's and sister's in Christ (and yes, that includes blood-family too!).  We are profoundly humbled by the charity shown by the saints, and, God-with-skin-on we see as even those we have not met before bring us meals, or pick up a load of our laundry.  We are humbled because the grace His people, our family has shown us comes unmerited on our part.  And we are aware of that. 

Our Father chose to demonstrate His glory by touching our boys and moving them closer to life among us.  In our last ultrasound, it appears that River and Bryce are virtually the same size, have similar amounts of fluid and are growing at an encouraging pace!  They have almost doubled in weight since the laser surgery in Cincinnati.  So, not only were they delivered from the door-steps of demise, but God has seen fit to thrust them into a robust state of thriving!  Last night as we lay in bed with my hand on Nicole's tummy, I could even feel one of the boys, River I believe, kicking hard against the tummy.  I have felt them move before last night, but this was the first time I felt the jolting foot thrusts.  That said, our earnest prayer remains that the boys will cook long enough to heal from the effects of the TTTS and that the issues in Bryce's heart will fully mend over the next two months. 

Our prayer also remains that we will lean on the Lord that brought us safe thus far to carry us all through to the end.  Since our return, we have been very out of balance.  It was as if a tornado lifted us, spun us all around, then landed us on new, unfamiliar ground.  Nicole is coping with the emotional difficulties of being laid in bed all day while her kids are raised and play around her with less of her input and less of her direct interaction.  I have been trying to find solid ground again, figuratively speaking, meaning, to find a way to navigate these waters and challenges that tend to my own spiritual needs as well as the spiritual, emotional, and physical needs of the family.  And I have fallen and I have fumbled in walking by grace a time or two.  This time has really impressed me with my own vulnerability and weakness.  I am not a victim.  No, that is not what I am saying.  Far from it.  We are blessed more than we could hope or imagine.  But I have become keenly aware again of the gross limitations of my ability to pull myself and my life up by my own bootstraps.  I have become more aware of my dependence on grace and the ability of my ego to clouds its rays.  I, like Nicole, have wrestled with my limitations and I do believe that in spite of my fumbles, there is great sanctification taking place in us all. 

In some ways, seeing such grace in action can give rise to new spiritual battles.  I always wondered why I sunk so hard and so low - and I am not prone to depression at all - after my returns from Africa.  Again, I felt out of balance as if I had been taken out of a dream of giving back to the grind of getting.  And I know such an interpretation is reductionistic and even hyperbolic, meaning that there was plenty of "self" in my African work and there is plenty a chance to die-to-self as I work and serve here, but the contrast could knock me off and for a time, a week or so, shut me down.  So it can be when I receive such unmerited charity and grace that I may start to mentally punish myself, berate myself, even belittle myself for my own failure to give and to die.  It can feel like a magnifying glass is held up for my eyes only so that I might more clearly see how selfish I can be and how I have failed my Savior and His bride.  I do think that my most uncharitable moments, those unforgiving glances or words that have slid out unwanted may find their root in a sort of self-condemnation.  We have all seen others judge from their own insecurity.  We have all also seen others project their own character defects onto those not responsible.  I have been guilty of both.  I suspect most of us have.  So if events orchestrate in such a way to expose us to our own frailty, to rip out any pretense we may have manufactured, and to point to some hollow claims we may make, that can be unsettling and can stir some unforgiving defensive posturing .... or, projection.  And I don't mean to pain myself a monster.  No, not at all.  But I am also far from the sort of superman one or two impressionable souls may have perceived in me.  I can assure you, my wife is all to clear about my humanity. 

But, I want to leave it on a high note and say that these musings, and this part of our existential sojourn has begun to work new healing in myself, and, is beginning to solidify into some discernible ideas and understandings.  I am not being exposed to some of the more unpleasant bits of myself just to leave them alone.  I suppose this another one of those things that I call "God's Purging".  

True Religion is This

TTTS.  I know when we are visited by something life shaking, it forever leaves a mark.  Many things have left their mark on me, but I could not have anticipated what TTTS would have brought into our lives.  As a disease, I hate it.  You know how dreadful that feeling is when you have a sick little one, crying, struggling, calling out for help in pain … Elise fell most ill when she was young and I remember watching her bent over the toilet with a burning anger in my heart.  I wanted to turn into a renegade warrior, super mini-size and jump into her bloodstream and go into mortal combat with that bug that had laid such dreadful siege of her.  But I was powerless.  All I could do was watch the pain with pain.  Her life was not in danger.  And there were my boys, our mirror image twins slipping away from us as Bryce was rammed so full of blood his heart was falling apart and River was drying up, seemingly by the hour: trapped twin, seran wrapped in a fluidless sac and pinned with his lips against the wall, against the placenta to be precise.  Barely moving, but how could he?  Where did he have to go?  His tiny world was closing in on him and there was nothing I could do.  We held on.  We prayed.  You prayed.  We wept, shut down, spoke out, reached out, you name it, as we waited on the unknown of how they would react to the surgery we were filled with both a dread for the procedure and a passion to get through it.  TTTS is a rare condition that will forever leave a mark on us and our home.  These boys will be held high in incredible celebration when they are born.  They will be our Miracle babies.  Some of you have one or two of those.  I can now start to feel the intensity of the joy and gratitude you must have felt, might even feel today.  You can imagine how musical it was to hear Dr. Scott say that it now looked like a normal twin pregnancy in our ultrasound Monday.  Their fluid levels were about equal.  They are the same size.  They are growing neck and neck. 

It is all just starting to sink in.  At the time, some of the emotion was so intense, I did not have the capacity to process it and keep moving.  I could not fully feel it.  Both the desperation and the triumph when we first heard two heartbeats the day after – those emotions were simply muted at the time.  I am starting to further unpack the experience and process the full range of emotion we walked through.  Bits of it come to me with a different intensity and a new angle.  I will be taking inventory of our takeaways on this for months, maybe years to come.  But one thing that has struck me with some astonishment lately, something I was mulling on tonight, mulling with some sense of marvel is just what an amazing thing the true mystical church really is. 

I have met my fair share of church-burned ex-faithful.  I have haunted many a hall in AA and heard story after story of how and why one cannot call their higher power God.  Almost every one of us must have some rough patch we walked through, even the most faithful of saints, due to the hypocrisy of the carnal church.  Most every one of us has been burned, sometimes deeply wounded by a Christian who came in and made residence in our hearts, our homes, our business under the pretense of being a child of God, then, when backed into a corner, the knives came out swinging just like any other scoundrel.  And they cut.  Some have been cut by their spiritual leaders.  Some have had their overbearing parents drive them so far away from the faithful that reconciliation is not in their vocabulary.  And I have come to understand a profound difference between the mystical bride of Christ and the institution of the church. All of us “churched” folk that have healed from our scars have come to that point where we see a division.  But sometimes that line is blurred.  Sometimes the “political” church is all you can see.  Sometimes, even on the inside, the church seems every bit as sick as the world around it.  Every bit as ripped apart by self and sin.  We have affairs.  We divorce.  We are alcoholics, sex addicts, shopaholics sometimes to a similar degree as those on the outside.  I was a card punching member in good standing of a local church when I was drinking myself into oblivion almost every night and ripping my family apart with irrational anger.  I might have even been seen as a leader, at least a leader in the wings.  Communion made me uncomfortable, I even tried to avoid it.  To let it pass would be to invite questions.  Someone might come poking into my nasty closet.  To drink and eat was to deaden an already seared conscience even more.  Every time.  I cannot toss any stones at the hypocrites among us – I have ranked among the worst. 

So with that in mind, how is it that I find myself basking in all the blessings of the true, mystical church?  How is it that we have been forgiven and benefited with such grace that even those who have not met us before are coming to our house to help Nicole during the long slow days?  How is it, provided my past, that now in my present I know I do not live in 66 A.D. but I feel like I am living in the beginning of the book of acts?  This is a message I wanted some of you to know and understand.  Regardless how burned you have been, regardless how much burning you have done, the mystical body of Christ is alive and well and as in tact today as it was in the long lost days so many of us lament of the early brethren.  Is the church full of sick people?  Yes.  Is it full of ‘sinners’, yes.  Are some churches far more concerned with making people feel good and important than making God be glorified?  Yes.  Are some churches more concerned with presidential politics than with serving the broken, lost, and poor?  Yes.  Are there Fox news thumpers quick to condemn those that think differently in the church? Yes.  Is there dogma, abuse of authority?  Yes.   Is there divisiveness and rampant demoninationalism, church splitting over things as silly as a hymnal?  Yes.  There are those who line up on Sunday every bit as sick as I was when I was punching the church card.  Heaps, masses of those.  How many come to church with a hangover and blurred memory of what they did or who they were with the night before?  I don’t know.  But I was one of their lot for MANY years and I know I was not alone. 

I had no idea how hard it would be coming home with Nicole on bed rest, with our many kids and our one-year-old Eden.  I had no idea because from the time it became our apparent reality, I hadn’t the time to really think about it.  We were in survival mode.  Not planning mode.  And before we came home Crystal Middleton has launched an effort to get us quirky veggie lovers fed and folks had signed up to the end of April!  Before the first workday hit upon our return Danielle Wilke had created a spreadsheet of helpers for Nicole in the day, folks to help clean, laundry, my word, every day was covered for childcare and cleaning in the first week.  Sunday as I was walking the kids out to the car after worship, Jill came up to me and introduced herself as the one keeping Eden at my home on Tuesday.  She had not even met us in person and she signed up to help my wife and kids. Are you kidding me?  This stuff is not normal.  This  is not how normal self-seeking folks behave.  Sharon T., a woman so full of grace and wisdom that you can see it miles away will be picking my kids up one day from CCS and keeping them for two afternoons this week.  What a privilege to have such a godly woman in our home. Lucy Wykoff whose life and whose kids have been and will be a blessing to countless people for generations takes delight in keeping Eden, doing laundry, you name it.  I am talking giants of faith coming on side.  Mindy Haywood who has a house full of her own with health challenges to boot is coming to clean our house this week.  Danielle who has five kids in a house built for three is playing point guard.  Crystal, whose family is caught in a dreadful battle not of their own making cleaned our house while we were away and headed up the meal train.  A close friend brought by a large and unreasonably generous gift to help pay to have work completed on the master bed and bath.  Friends are planning in-home double dates with Nicole and I to giver her some sense of frivolity and normalcy as she lay there chained to the sofa or bed.  Geff and Jon, deacons both have already arranged to come paint our master bath. Andy, and Gene Smith who have also offered to come.  Jenand Derick Ball who called about the bath as we were leaving town. 

There is nothing exceptional about Nicole and I.  We are not the most giving, most inspiring, most accomplished, most loving, most faithful members of the community.  Our lives are somewhat quiet and somewhat constant.  We have not earned stature in our church or our community.  We are simply a part of it.  We neither stand out nor fade in.  We are part of the fabric and pleased to be woven in.  Yet the body of Christ has wrapped its arms around its own in a way that I think can only point back to those radical days so many of us pine for in the ACTS of old. 

I am wrong about a lot of things.  My opinions are about as useful to someone else as a used rag.  And I cannot say “you are wrong” and “you are right” for I am the judge of no man.  I cannot say this church is sick, this church carnal, this church political.  I can say what fruit I see.  I can see a tree with no fruit and notice the lack of fruit, but I do not know the tree.  But I have come to believe that the particular bit of the huge mystical body of Christ that we are a part of, Covenant Presbyterian Church is an unusually healthy place for sinners to find and feel redeemed because it is not a place about making us feel good, about creating high emotion or entertaining us.  My word, according to Nicole, the services can be profoundly starchy.  And yes, we have some of the frozen chosen of a traditional Presbyterian church.  But I see Christ in a hundred faces.  I see a place alive with His love.  I see people doing small but heroic things for others.  And I think, I think it is because above all, the liturgy, the hymns, the exegetical preaching, the formalities are all designed, all thought out not to attract and entertain, but to glorify God.  It is about making us right with God, not making us feel good about ourselves.  Being right with God brings a wholeness in ones self, but you don’t go into self to get to God.  You go beyond self to get there.  And I am not saying that contemporary worship, soul worship, a lack of liturgy, or any other formality cannot achieve some mystical health in the body.  Far from it!  I think it has FAR LESS to do with the instrumentation and the songs and far more to do with the heart and intent.  Are we submitting to a God-centered world, or are we creating a man-centered religion?  I am more than convinced that God can be just as glorified in African drums as he can in High English hymns.  But are we about dying to self to live as Christ or are we about conscripting the power and authority of God to make ourselves more what we want to be?  I think when Nietzsche had his madman claim that God is dead he was attacking a religion that had humankind at its heart.  He was saying that this religion of man for man has run its course.  Its days are numbered.  We have slain god by pulling back the emperor’s clothes. 

“Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.”  I think in seeing glory come through weakness, in defending the defenseless, in fighting for the life and dignity of those like orphans (think Jewish culture of old) and widows (again, think how Jewish culture of old esteemed the orphan and the widow – not very much) we are demonstrating the heart of Christ in us.  I think the best way to see the face of Christ is not by being barked at with some do this – do that, but to have a meal brought by on a Saturday night when the family is fighting, struggling for their defenseless – in our case, our unborn sons.  It is in those who come to pick up Eden while Nicole can’t, it is in those who fold laundry when they have a mountain of their own to fold.  And seeing the face of Jesus come like this into our home each day has burned a new and wonderful hole in my heart.  I am slow to learn.  Slower to purify.  It takes strong winds to move me.  But seeing the mystical body in action seems to be just as amazing as seeing your boys pull through TTTS (so far) okay.  Nicole and I don’t deserve this help and love.  But that’s just the point.  That’s just the point He is making to me as he is calling us on further to love those unloved, to help the helpless both inside and outside my home. 

Again, thank you for every word of encouragement, every prayer, every call or text or facebook post.  May we, those of us who have received amazing grace, never withhold it from those in need.  

On Grace and Gratitude

I want to give thanks.  This is a letter of thanks.  Not because we are out of the weeds with our boys in our arms, but because an amazing and wonderful thing has already occurred, many wonderful things. 

First off, we believe that had we not switched OB/GYNs after Nicole’s second tracheal dilation to Dr. Harnsberger, our boys may not be alive today.   TTTS is a killer.  River and Bryce had a 100% chance of mortality is what our nurse told us at the Fetal Care Center in Cincy.  The team, Dr. Lim, our surgeon specifically told us of cases that were diagnosed, jumped in the car to drive immediately from their hometown to Cincinnati Children’s, and by the time they got there and were rushed into laser surgery, both babies had already perished.  The advance on our boys was rapid, the assault on Bryce’s heart, the draining of River’s resource.  Dr. Harnsberger was watching us, whatching out for us like a hawk. He was performing all the ultrasounds himself, and we have being very careful and very precise.  He told us early on what we were open to as parents of monochorionic, identical twins, we had a 10-15% chance of being visited by this disease.  But Scott was aware, he was also aware that there were treatment options.  So the day I was in Knoxville and Nicole went for a routine checkup, that day he dropped everything and ran out to make calls ashen white and rushed her over to Dr. Lam’s for a second inspection by his more advanced machinery, he set something in motion that we do not believe would have been set in motion had we not moved to his care.  When Dr. Lim looked at the boys, he at first thought we were there, then he looked again and backed off.  We were on the brink, but not there yet.  The boys were 8Cm to 2.3Cm.  He sent her home but set an appointment for a week later.  Upon that visit less than one week on, we had advanced to what Dr. Lam thought was stage 2 TTTS which qualified for Laser surgery. 

We were called twice by the Fetal Care Center before that day was over. We were on the road the next day with a full day of tests set up for Friday.  That was a 12 hour day of testing and I have recounted that before.  In closed TTTS groups we had read so many heartbreaking stories.  Good one’s too.  And it seemed the most had both triumph and tragedy.  Many saw the death of one twin after laser, or, the demise of the donor after treatment, seemingly to keep his brother alive to birth.  These stories were painfully common.  We were looking for everything, every story of triumph that is.  But things were pins and needles. 

So here we are, River is in perfect health, with 3.6Cm fluid and a full or filling bladder having been pinned and shrink wrapped against the wall of the Uterus in .6Cm of fluid, on the brink of dehydration.  We were in the end diagnosed stage 3C, one tiny step from stage 4 which is common to point to permanent heart damage in one or two of the twins.  The pressure in Bryce’s heart was tremendous with thickening walls, and two leaking valves.  They referred to the damage as severe.  Even today Nicole takes blood pressure medicine for him that pummels her every six hours.  The pressure had been reduced, but one valve in the left chamber has severe leakage still.  This may or may not be attributable to the TTTS though leakage is common to stage three.  The Cardiologist and Fetal Care Surgeon both thought it may correct itself in time as his heart heals over the next 8 weeks from the TTTS.  That is one amazing thing about the womb, it is regenerative … damage done one the outside such as that would be damage lasting.  In the womb, things are plastic enough to repair.  However, the cardiologist believes the valve may be oddly shaped pointing to a congenital defect in his heart, but not one that is necessarily life threatening.  Even if the valve does not heal and seal with the heart, there is a better chance that it will not explode into a life threatening issue, and most likely will be something that will have to be monitored in him as he ages till he reaches an age when there are good options for fixing it.  But those fixes are not ideal, so as long as the heart tolerates it without turning toward demise, he will be normal.  Wow. 

So the thanks.  We are so deeply grateful to Dr. Scott Harnsberger who was watching for our boys like they were his own.

We are thankful for Tabitha, Scott's wife who not only lent her husband to us in times of crisis, but who advised, and counseled us behind the scenes and helped us prepare for what may lay ahead.

We are grateful for Dr. Lam and his connections to advanced fetal therapy in Cincinnati and Philly.

We are thankful to the astonishingly good team at the Fetal Care Center in Cincinnati, especially Dr. Lim and Dr. Polzin who performed the Selective Fetoscopic Laser Photocoagulation, Amnioreduction and Microseptostomy. 

We are thankful for the ENT team at Cincinnati who have decided against a Trach for Nicole and have decided they can perform a Tracheal Resection as a permanent fix without much risk to her vocal cords to treat her Idiopathic Subglotic Stenosis. 

We are thankful for each person that took time to pray for our boys.

We are thankful for those that took time to pray for us, hold us up as well, and send us great strength and encouragement through their prayers and words. 

We are so thankful to our home church, our brothers and sisters, who were in the feeling trenches with us during this period and kicked into action like the cavalry as darkness surrounded us. 

We are so moved by your letters, Emails, FB posts and notes and anyone who took time to make us feel like we were not alone.

We are thankful for TTTS support groups, for TTTS moms who reached out to us and advised and advocated on our behalf.

We are grateful to those that activated prayer from folks who did not even know us.  We know there are many but if you are tagged in this note, we at least aware of who you fought along side us and brought others to our cause before the throne. 

We are thankful to those that shared the picture of our boys here on Facebook asking others to pray on their behalf.  

We are thankful to our small group at church who had prepared a care package for Nicole that Crystal placed at her bedside and for the Guyton’s who did the same.

We are so thankful for Crystal Middleton, who brought her boys and cleaned and organized our bedroom while we were gone.  

We are thankful for our Sunday School class who burned up my phone with blessings and prayers in their Sunday School Hour.

We are thankful for the staff at CCS who kept loving watch over our little ones and prayed as a team for us and our boys. 

We are thankful for Danielle Wilke who volunteered to be a point guard with Nicole’s aid and for Crystal Middleton again who led the charge to have us fed.

We are so grateful for every family, mom, woman that has pledged to help provide cooked meals for us in this difficult time as Nicole is so confined. 

We are so grateful for great family, for Kelly who drove up to sit with me and then Nicole and I after surgery, for Peggers who kept the kids, for Martha, Lucy Wykoff, Martha Krabbendam, and Lynda Brown who all spent hours keeping Eden or taking Elise to gymnastics and had a hearty cooked meal for us with all our kids when we pulled into town along with a  celebratory cake.  And for Pappa Doug who has done so much around our house it can’t be listed. 

The list could go on, and on even.  But there are two even bigger points I want to make after I give the greatest thanks of all to our loving father who holds our boys and Nicole in amazingly loving hands.  Who has blessed us far more than we deserve.  Who has loved us when we scorned and loved only ourselves.  Who has taken the lashes of our rebellion in the past, and in forgiveness has paid us back with more love and more miracles than we can get our heads around.  

So here are the points.  One, we read of those who are not part of the loving spiritual body of Christ  (not the material church mind you) who are in a similar boat we found ourselves in and they are falling apart with little connection and no support.  As darkness set all around us, we felt and found a thousand points of light breaking through even in the uncertainty.  We discovered that it not only takes a village to raise a child but a village of love filled folks to save a child and save a family as they give themselves to saving their child as best they can.  For those who have not had the wagons pulled round in times of assault from the outside, I can honestly say my heart breaks for you that you may feel like you have to grab a proverbial gun and hold on paranoid for dear life.  We were able to let go and feel incredibly strong, not only because of the hands of the father who knew our boys before the fertilized egg split into two, but because those who had been moved by the creator’s unconditional love demonstrated the love of God in word and deed. 

Secondly, based upon where we stand today, and what we know, we are on the receiving end of a miracle.  Not one we had credits to buy.  Not one we earned.  But one that was given just because of grace.  We are not out of the woods, and there may be VERY difficult days ahead, but as Scott told Tab when he came home tonight – our chances just shot sky high that we will have our beloved Bryce and River one day smiling in our arms.   Grace cannot be earned.  It is not in limited supply.  It cannot be swapped like bills on the open exchange.  It is not scarce.  And any time a religious person treats it as something to be bartered for, bought, or earned, it looks rather ugly.  It’s beauty comes from the fact that it is not merited.  It’s impacting power comes from the fact that it cannot be earned.  It is given. Just given.  And it’s given to those who, like me and like my wonderful wife have done things which should have made us worm meat.  Our story is “colorful” as they say - Filled with more idiocy, stupidity, and spiritual rebellion than you could shake a stick at, but today, rather than having our wages, we have hope.  We have each other.  We have our beautiful kids.  We have our family, our life-long friends.  We have you and most importantly, we have God’s love living in us rather than the anger of old.  And today, we have our twin boys safe and sound in Momma’s tummy.