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.    

A Triumph of Grace and the Road Ahead

I was going to write after the ultrasound tomorrow, however, after a long talk with Dr. Lim, our primary surgeon, I decided to go ahead and give an account of Nicole and the boys tonight because it seems most likely we will learn very little tomorrow morning from today about their state. But lets start with the good news, news that seemed even better after having received so much news that seemed to be dark, bleak, and nightmarish for so long. 

Bryce and River survived the laser surgery. That is huge. The doctors also estimate that the Donor, River, has a 40% share of the placenta production whilst Bryce has 60%. That is superb news as well, but it is only a guess though a good guess and both connections are membranous rather than direct. Huge questions remain about the production of the placenta, but that will come in a bit. They were able to drain off 5lbs. of fluid from Bryce’s sac, or, a two liter bottle plus a glass worth. That took about two months artificial growth out of Nicole’s belly and relieved her of tremendous pressure and discomfort. Bryce now has 3.5cm fluid rather than the 12.25 he had just before the procedure. River was down to .6cm, or, almost plum dry, but he may not begin to generate surplus or waste for several days, if ever. The ENT surgeon did dilate Nicole’s trachea and gathered a bit of good news there as well. The stenosis is lower than previously believed. It is about 2cm below the vocal cords. This means that they CAN perform Tracheal Resection, meaning, they will cut out the affected part of her airway and rejoin the other portions, and this can be done without having a dramatic impact on her voice. There are only a handful of hospitals that perform this procedure, Cincinnati performing the highest number in the world, so we will certainly travel back here to have that operation after the birth of our boys, God willing.

Tomorrow’s ultrasound will happen primarily to tell us if the two boys survived the initial shock from the vessel ablations that occurred. They selectively cut 9 connections between the boys and had to cut two, or more, unselectively because there was no way to access the connection point behind River who was pinned so tightly against the placenta and if they cut most but not all, as we learned today, the twins would decline rapidly and die. Without surgical intervention, it may have been only a matter of days, maybe weeks before both River and Bryce were lost, but their chance of survival was 0 based upon their diagnosis and the progression of the disease. Nicole will be kept on bed rest the remainder of the pregnancy primarily to direct as much blood and nutritional supply as possible to the two babies who have a long road of recovery ahead. While there is no evidence that bed rest will prolong gestation, there is evidence that momma’s exertion directs oxygen and blood to her organs and muscles offering less to the placenta. The bedrest is to give the boys the best chance of having the placental supply needed to survive. 

If Bryce’s heart shows mild signs of improvement this Friday in the Echo Cariagram, we can be encouraged by the belief that he is healing and that healing can continue to restore his heart to normal over an eight week period. The level of damage his heart had sustained was classified as sever, so they estimate a good eight weeks of healing to undo the damage cause by the disease of TTTS. The great concern for River and the things that Dr. Harnsberger (who will again assume a leading role in our care) and Dr. Lam will be looking for is a growth pattern that is somewhat normal and while he will be smaller, somewhat mirrors the growth of his brother though he may remain 10-15% behind. Decline in his growth over the coming weeks relative to his brother’s would be alarming, suggesting he does not have adequate placental supply to develop his lungs and breathing capacity. We are tentatively slated to head home this Friday, but Dr. Lim did warn us two times today that we may be held longer depending upon the test run this Friday. 

If River and Bryce can be adequately fed by the placenta, our greatest hope will be that we make it to at least 30 weeks before delivery because that amount of time would be essential to help River overcome the developmental handicaps he has endure thus far though he will never overtake his brother, nor even pull even with him, that is about the bench mark guess for him to have viable lungs and reduced risk of neurological disorder. That is also the benchmark time estimated for Bryce’s heart to rebuild and recover from the damaged sustained thus far. 32 weeks is far preferable and 34 would be practically miraculous for this pregnancy. So, having jumped a major hurdle today, our focus and prayers orient a bit differently. 

1) That we learn over the coming days that the surgery was fully effective in curing the disease by severing all the exchange of blood.
2) That the two unselective cuts they were forced to make would not deprive River of desperately needed blood and nutrient supply
3) That River’s sac would begin to fill, his bladder begin to fill over the coming days suggesting that he does have adequate placental supply
4) That the placenta is healthy enough to provide both boys the supply they need to recover from this disease.
5) That the gestation would carry on long enough to provide the time needed for healing if that supply is adequate. 
6) That Bryce’s heart would show rapid improvement, first as demonstrated by the two valves that are presently leaking to begin performing with normal function.
7) That Nicole would continue to hold a hopeful outlook and a watered heart even though she will be severely restricted in her movements over the next few months. That she would neither loose patience, nor would she push herself too hard as she will no doubt be motivated to interact more actively with our other children, especially Eden, and to connect with her support system and community. 
8) That in her ‘handicapped’ condition she could continue to be encouraged by the prayers and connections of friends, family, and church family. 
9) And for myself that I will not loose sight of the goal – the full term rescue of our boys – as my burdens grow even heavier with her limitations and as the full nature of our relationship must change for a period of time, estimated to be 5 or 6 months. For me, loosing sight of the goal and the incredible burden and sacrifice Nicole must make would look like my loosing patience with her perceived lack of support in the burdens of the home or becoming impatient with our mandatory “marital” separation for an extended period. And if you don’t think I am capable of forgetting the goal, or that I am capable of forgetting what she has and is enduring if I focus on myself and my perceived needs than you don’t know men very well. And I am man, and I am capable of blatant stupidity, childish impatience, or downright selfishness. May the spirit of God guide my own heart out of self, into joyful surrender to my wife and my family and may I not be tempted into self-pity.
10) That the same spirit will guide Nicole and also help her to win the battles she will face against bitterness or self-pity. 
11) And may our children be patient with us as well as they are asked to do more, to make sacrifice, and to put their own desires aside for the sake of the whole

We are not the first folks to endure a difficult time. We are not the only folks we know to endure a difficult pregnancy. Not by any means. I have heard stories of heroes from among my friends who endured great trial and heartbreak but held to their hope and faith throughout. 

May God use this to call us all, Nicole, myself, Elise, Thomas, Sophie, Ani, Kai, Eden, AND Ryon to further sanctify us and draw us together even stronger as a family as it will require surrender of self on all our parts, as well as the loving hand of the giver of life to see these two beautiful boys to the other side. May we take joy in being poured out for one another. May we find great satisfaction in laying aside our designs, our plans, our desires for another in the family that may need our support. And may our family shine the light of the Love of our redeemer in a way that makes folks take not of its source rather than its reflecting surfaces. 

And to our friends, our community, our church family and our wonderful family who have encouraged us, helped fill us and sustain us thus far: please again accept our deepest gratitude for the role you have chosen to play, any burden you have chosen to bear on our behalf. Nicole was in tears after she came too and started collecting her wits once she absorbed that the boys were alive, when she read your emails, FB posts, heard of your prayers and took stock of how many had already volunteered to help with meals and childcare. The outpouring of Christ’s love by his saints is enough to make any bitter soul take a second look at that band of broken folks who are not given to religion, but given to a living, eternal, and endless love ultimately expressed in the redemptive sacrifice of Humanity’s greatest lover: Christ. 

PS- I believe further updates can be far more brief as I will try to offer news on the boys as it becomes available for what it is worth. Thank you for your love, support, and prayer. 

One of the hardest Days

To all of our friends and friends of friends and brothers and sisters to whom and for whom we are deeply grateful ...

After 12 hours of testing and consultations and feelings we cannot begin to put our fingers on, we are in our room, wiped out in every way but I wanted to briefly outline where things stand with Nicole and the boys.  We really cannot thank you enough for your love and support.  Nicole said to me tonight after our return to the room: "I think I am starting to understand people who have a major life event that permanently changes them".  As our wonderful Dr. Harnsberger in Chattanooga said to me on the phone after all the proceedings were over: "We know in our head that God is in control and soveriegn, but sometimes it takes a bit of time to seep that down into our hearts".  We are not alone.  Many who may read this have been through sleepless nights, tears and tears of agony, pleading and waiting in the great and terrible unknown.  We have been encouraged by some who have been there, endured with hope and seen amazing things come to them through the love and grace of God.

As many of you know, there are two things we are dealing with and both will be treated simultaneously.  Nicole is diagnosed with Idiopathic Subglottic Stenosis.  This means her trachea closes recurrently and they have no idea what is causing it.  The Cincinnati ENT team has taken on her case, but, they have only treated this condition 30 times and they are among the worlds leading centers for Airways disorders.  This means they will operate on her airway along with the operation on the twins in the womb but this will again be a short term remedy to the symptoms rather than a long term solution.  I will get to that in a minute.

The TTTS – Twin-to-twin transfusion disorder was determined to be stage three which means that the disease is both rabidly progressing and causing severe strain on Bryce’s heart.  His blood pressure is tremendously high, the walls of his heart have thickened and he has two valves leaking.  Pressure in one side of the heart is 50 over ten when it should be ten over ten.  This stage means that they cannot manage the condition with serial amnioreduction.  The disparity in the space they occupy is tremendous with Bryce having roughly 11 times the space and fluid as his brother who is literally wrapped tight and pinned against the placenta.  They will be seeking out all of the offending blood vessels running to the boys and cutting them with laser.  There could be ten, there could be 40 offending blood passages to cut so the procedure will take some time.  Then they will drain the excess fluid from Bryce’s sac and finally put a small puncture at the base of River’s hoping they will equal out a bit.   One complicating factor is that neither of the boys is attached to the placenta directly, they have membranous connections but seem to be serviced well indirectly and their size disparity is not as pronounced as we were told in Chattanooga by Dr. Lams office which suggests they may have good and acceptably equal access to placental supply.  After this procedure which may last up to two hours, they will then put Nicole under general anesthesia and the ENT surgeon will attend to once again dilate her airway. 

The odds are good but also frightening.  They tell us there is a 30% chance statistically speaking of loosing one of the boys consequent to the procedure.  However, to do nothing we will most certainly loose both.  But that gives a 70% chance survival of both with a 90% chance survival of one of the boys.  If both boys survive the trauma of surgery,  the next 24 hours is very crucial to see how they will react to the tremendous change in blood supply.  The third hurdle is the next 72 hours to see if they can engage in recovery of if one or both begin to decline.  After that, if we can make it to 31 weeks gestation we have very good reason to believe we will have two healthy sons.  If they are born even more premature, the odds of long term neurological disorder increase to a 20% chance in TTTS kids.  This means that Nicole is put on bed rest and pelvic rest the remainder of the pregnancy.  She has been instructed not to stand to prepare meals, or transport loads of laundry or even to lift Eden. 

The long term fix for her Stenosis is complicated.  There are no attractive options but the team up here is going to work hard and creatively on a viable long term fix after our two boys are born, God willing.  All of this means that we as a family have to reach out and actually seek help over the next two or three months .  Provided our boys survive and carry on growing and healing, we have no idea how we can pull this next few months off logistically.  We welcome help.

As for me, though I become filled with fear from time to time, our sleep is spotty, and tears still manifest spontaneously as my mind plays out the possibility, I am also convinced that God is speaking to me.  Not only through you and your love, prayer and support, but through these trials and tragedy.  I have been put through many painful fires, many self made though directed for a purpose, but fires that had to burn, and burn hard and furious to enable me to hear, to move, to grow.  This fire is raging and it is one I did not light.  I have messed up my affairs in myriad ways to learn myself some lessons, but here I am being spoken to from a place, a deep, moving, terrifying, penetrating place I have not had to listen from before, at least not to this extent.  But I become more convinced that as I walk through the pain, the fear and the unknown, I am being taken some place I need to be but I am not sure where that is or what it looks like.  I do believe that in listening and leaning on the power of God (BECAUSE I HAVE NONE, NO, LESS THAN NONE TO AFFECT an outcome I so passionately desire), I believe there is another level of purging that has to take place. Regardless, whether this growth will occur through weeping or rejoicing, I implore you to carry on pleading, interceding for our son's River and Bryce, that we might all be blessed by their lives, their smiles, their laughter and that God would be most glorified by life.  

Yours in love and Christ,

Frank, Nicole, Bryce, River, Elise, Thomas, Ani, Sophie, Kai, and Eden 

Collision of Hope and Despair

I have to write, if only because it is how I need to process at this moment.  If you choose to read this, please forgive what may seem to be disjointed thoughts.  I am wondering through a new place with little direction.  We are. 

The news from the high risk Dr. was far more grim, in a very short time, than what we ever anticipated.  Grim and not so grim.  The fluid around Bryce was right at 8CM last week and 2.3CM around River.  Enough to be disconcerting and possibly ominous, but it did not classify as emergency status.  Today’s measurement, one week on, River was wrapped so tight with only 1CM of fluid and Bryce was swimming around in 10CM of fluid.  That put us in class 1 Twin-to-twin transfusion and qualified us for fetal laser surgery.  Further inspection revealed that River did not have a bladder.  That tossed the boys into class 2 TTTS.  Fear, pain, I don’t know what came first, what came hardest, what all was in there, but I felt weak, sick even, and tears just strolled out of my eyes with little regard for good social practice.  Nicole as well.  Then she pulled it together better, quicker to muscle our way out of the office, though once she was alone in the car, she fell to pieces.  We are awaiting a call from Cincinnati Fetal Care Center where we will go shortly for an evaluation and probable Fetal Laser surgery.  They will attempt to ablate the vessels moving the blood from River to Bryce, thus hopefully halting the advance of this condition.  Things look promising though. There is around a 70% chance statistically speaking that we will carry both boys home one day soon.  There is a 90% chance we will at least have one with us. 

I was in rehab with a guy that lost his son in the first week of his son’s life.  He was holding his boy when he passed.  He was never able to heal, rather, he retreated into booze and drugs, he and his wife, they just ran from what they could not face.  He said his heart turned black, like a rock, dead –it is how he managed to carry on.  I have known others that lost a child, an infant, we all have, and I have always said, “I cannot imagine” and “I don’t know how you would begin to recover in a healthy way”.  I can empathize, yes, but only in  a fractional way.  Because I literally cannot imagine, I literally cannot go to the feelings they must feel.  I can imagine from afar, but that is all.  We have not lost a child.  But I also never anticipated having to confront the possible loss of a child.  And some will scoff because they are still choices, they are not born yet.  And we say their faces today, their legs, arms, hearts – we saw our little boys so close it was as if we were holding them.  I never knew I could love something so much that I have not even held before.  Yet there they were and the attachment was real and intense.  And the Doctor confronted us with the possibility that they were slipping from us.  Thankfully, we live in 2013 and there are now tools to deal with this that did not exist 20 years ago.  20 years ago we could maintain little hope they we would have our sons at home on day.  That has changed.  And Ironically, our Doctor told us that the Europeans have the most advanced tools for fetal care, things they have been doing for years are just starting to reach the states.  Regardless, our doctor who trained in Fetal surgery had complete confidence in the folks at Cincinnati.  We have good reason to hope.  But we have to walk through the fear, the shock, the pain to get to feeling the comfort of hope and faith. 

I suppose a reason that the shock and fear seems so gripping right now is because how rapidly things progressed.  We fully anticipated monitoring their conditions and held strong hope that things would stabilize and not progress from our visit last week.  It was hard to see River in such tiny confines, such dry conditions, barely able to move, while his brother Bryce has a super size pool to move around in and to know that River was pumping that extra fluid in to Bryce’s house out of his own.  River is the donor, it is through him that everything is passing to his brother and the disparity in size has just started to show, to diverge with River now  20% lighter than his brother.  In a week.  That is halting. 

So I don’t know what to do.  We feel so much and at any given moment those feelings may change.  We are so encouraged by the love of so many, the prayers of so many saints, so many brothers and sisters of ours.  I cannot imagine charting these waters without that support.  So, knowing that God has given us you and us to you to uphold and support one another in this life, I am going to give explicit prayer requests 

1)   Nicole’s trachea is closing fast.  Her airway seems obstructed to the point it was last time we were rushed into surgery.  She will see Dr. Hunt tomorrow and my concern is that he is going to call for surgery on her as we have to head to Cincinnati to save the boys. 

2)   Nicole’s spirit has remained overall steady and strong even though the nausea and vomited has become resurgent and she has been confined to less and less movement.  Pease pray that God would guide her heart and let it rest in faith, knowing that our God is Love, not like love, not loving, but He is Love and that love belongs to her, Bryce, and River as well. 

3)   Please plead that the surgery is a success and that the boys recover and begin to develop steadily to birth.

4)   Things at work are in a bit of an intense phase for me.  I have been working as hard as I can to complete construction on my projects at the house so Nicole can have a working bathroom when she is bed ridden and I have done my level best to give all the time I can to she and the kids, time I need and the addition to our house for the coming eight and ninth child have begun tossing our environment into more chaos.  I have not had time to “take care of myself” and have been muscling my way through all that must be done.  Yet I am an alcoholic and when I muscle too long, that old demon starts to call for me, promising unwinding, escape, some RnR.  It is a lie and a trap for a man like me but I would be lying if I said I was not concerned about my recovery.

5)   Pray that the Lord would guide our hearts and pull us both closer to Him and to one another through this.

6)   And please pray for our other kids who adore their sister Eden and are so excited about the boys and who will be cheated time and affection from us for a spell when they may even need it more. 

Right now I want to pull my kids in close and hold them tight.  I want to take them all to Ohio.  We are a team.  We are one for the other. God has sewn us together so tightly that we are strong unit bound in love by faith.  I had this moments heartbreak knowing that we would have to leave all our kids behind for a while and I miss them any day I cannot hug them hard.  And right now I am inclined to pull them all in closer and huddle up, but we are going to have to leave them behind.  That does hurt.  But I believe this trial will mature us even more and build our family up in the end.  I believe that what happens to the children of God.  I believe that even though things do not go our way, and even though there are things that pummel us with pain, in the end, for a child of the King, we are made stronger, more whole, more connected when our hearts remain open to grace and our minds listen to what these things have to teach us and tell us.  

And Finally, please hold up Jake, Katie's son who is having surgery next week at Vandy to repair holes in his heart as well as Nathan and Katie.  Please hold up my Dad who is around six months into his wait for a new heart on the transplant list and to our beautiful Martha who is waging a war on her cancer al-natural.  

Mid-Feb Update on Nicole and the Twins

We were frightened today.  Things blurred and were agonizing for several hours for Nicole after Dr. Harnsberger became very concerned that Twin-to-twin transfusion was occurring.  This comes after another discovery that one of the twins has only one artery and a vein whilst the other has the standard two arteries with a vein connecting him to the blood supply – meaning, his umbilical cord did not fully develop.  This discover was made soon after our last update.  One third the time when one twin has less arterial blood supply it points to other defects with the baby such as a cleft lip or webbed feat.  Our son seemed to be developing normally and seemed to be growing in size and stature with his brother so we appeared to be in the safe zone there.  However, it remained a possibility that one of the boys would develop whilst the other struggled to gather the needed fuel for development, and this possibility would jeopardize the struggling brother. The doctors wanted to keep a close eye on their development, but, so far so good.  However, when Scott stood up abruptly with great concern during the ultrasound exam today, it seamed another possible complication had arisen.  He called the high risk doctor and scheduled to have Nicole go directly there for a more thorough examination with their equipment.  Dr. Lam, who specialized in twin-to-twin transfusion before moving to Chattanooga did find that one of the boys had only 2.3 cm of fluid surrounding him while the other had a generous 8cm.  Had the disparity been 2 to 8, we would have been off to Cincinnati immediately to the Fetal Care Center where they can perform a fetoscopic laser procedure.  While the results vary widely after this surgery, it appears that at least one of the twins will have a 90% chance of survival while both will have a 70% chance.  Without the proceedure, TTTS has a 60-100% mortality rate.  

At this point, both Dr. Lam and Dr. Harnsberger will be seeing Nicole weekly.  They will have to respond immediately if the transfusion progresses.  It is not a certainty that it will.  It appears to be a probability, but not inevitable.  Further complicating things, Dr. Hunt, the surgeon that performed the tracheal dilation suggested that it was likely that Nicole would need a tracheotomy prior to delivery.  As I write this I feel weak with fear.  We feel feel helpless to help our two little boys.  So we have to rest knowing that they are in God's hands and that God is love, come what may, He is Love.  Outside of his control, there could be no rest, no comfort, no consolation.  Just fear.  And while perfect love casts out fear, I feel it must be a process for His love to purge a fear from one's heart.  I called Nicole today from Knoxville and asked that we go ahead and name the boys.  I wanted them to have names so that we could pray for them by name.  I wanted them to have names so we could personalize it further, and should tragedy overtake us, so that we could mourn the loss of a son, a real son, a real human.  Please pray that our days, in the end will be marked by cries of joy rather than cries of pain.  And while pain is part of this process, as it is with all human suffering, may life, may the life of River and Bryce May be a celebration for many, many years to come. River is appropriately the one with the greater blood supply.  The name River is so full of spiritual meaning for me, there are so many existential lessons I draw from the river.  Bryce after the National Park, because Bryce is a place that captures our imaginations with a thousand giant fingers pointing to the heavens as if God drew hands of stone to point us where our only hope lay.   

Frank and Nicole May