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