A lead hammer from the hand of love

5/30.  Another one of those big days in our little family’s life - especially amongst our smallest members.  We met with the surgeons that would be attending/performing River’s reconstruction as well as the anesthesiologist and his nurse staff prior to the surgery.  Through the imaging they were able to determine that all of River’s lower GI was present and intact though the Rectum did not connect to the anus.  In fact, there was no anus.  There were fissures which were leaking GI waste (not food waste because he has not consumed anything yet in his short life), but those tiny holes were not where the anus should be, nor were they significant enough to pass solid waste.  So, they had to create an anus, opening it to the sphincter muscles which are required for control of waste evacuation and then attach the rectum to this structure because it was detached at birth.  The question we had going in which had no answer at the time was if the sphincter muscles were present.  When Dr. Dickie (colorectal), Dr. Tiao (surgical director liver transplantation) and the attending resident entered Bryce’s room where we awaited news from the team working on River, we were elated to learn that not only were they able to connect everything and create an anus in the proper place, but they even tested the sphincter muscles which were developed and present through stimulation and they appeared to work well and be ready for service at the proper time.  When we were admitted to see River in the NICU, he looked and acted perfectly normal as the pictures demonstrate.  While it is not a guarantee that River’s lower GI will function properly when he comes of the age to call upon its regulating services, it is most likely that he will be perfectly normal in that function.

5/31/13

Today began on a high note.  Nicole was discharged from the hospital and moved in with me (her husband) at the Ronald McDonald House across the street Children’s where our two boys are residing.  She had a clip in her step with the taste of freedom for the first time in many months, the first time out of a hospital in almost six weeks.  I wanted to take her picture with Ronald and celebrate with brownies and smiles.  But, we decided to scoot on over to see our boys.  Optimistic.  The Cardiology team anticipated discharging Bryce to the NICU to be with his brother River at the beginning of the coming week.  The neonatologist was not so sure things would align so fast for that to happen.  But everyone seems to understand how important it is to get our boys in close proximity being as they are not just identical twins, but TTTS twins that shared a placenta, shared some fluid and flow and ultimately, shared the same sac and braided their umbilical cords.  Twins, when young seem to grow and thrive better with one another.  Optimistic.  River looked so great post-op yesterday.  From the outside, with his diaper on, you never would have known that he had major surgery the same day.  After one heck of a stormy ride, we finally felt some tail-winds blowing us into the clear.  Cardiology would not permit a move for Bryce until his ductus arteriosus had not just functionally closed, but structurally closed so they could rest secure that it could not be reopened by significant pressure.  So the echo was today, this morning, and it was supposed to be uneventful.  I dropped Nicole off with Bryce but before I took off to check on River downstairs, the cardiologist came in somewhat frantic.  He knew that we wanted to get down to see River but wanted to give us word prelim on the echo find though the imaging had not been fully read. 

That’s when the emotional tone of the day was altered, but not so dramatically.  He suggested he saw coarchtation of the descending aorta which is basically a constriction in the main blood line to the lower body much like Nicole experiences in her trachea with the stenosis.  When this occurs it is most commonly triggered by the closing of the ductus which is essentially a fetal shunting line which attaches to the descending aorta near the top before the arch down.  Yet Bryce’s coarchtation was much lower down the line.  But this was based on a preliminary reading and though he was concerned he was not convinced and had ordered a CT Scan to double check with better soft-tissue imaging.   So we held on, but remained moderately chipper and optimistic that we would dodge a bullet.  That was until I came back upstairs from visiting River and ran into Dr. Michaelfelder in the hall.  He was headed for Bryce’s room.  Michaelfelder is head of fetal and pediatric cardiology here in Cincinnati and he was principal over our case in utero.  As he and I walked in the all I really didn’t think much about it till we got to the room and our CICU cardiologist was there to deliver the report.  The room was somewhat full when he started as the NICU had sent two nurses to care for Bryce today, the principal nurse coordinator was on hand along with the two cardiologists and Nicole and I.  A closer look left no doubt of the diagnosis.  They also discovered that the atypical placement of the constricted area was caused by the very low connection of the ductus arteriosus.  The CT scan was no longer needed for confirmation, but to map out a surgical approach to the affected area of the descending aorta – ie, whether they would enter through the chest by cutting his sternum open or the side by separating the ribs.  Bryce’s BP measured in his arm was much higher than that measured in the leg further demonstrating that the kidneys were sending a signal to the left ventricle that they were not getting enough blood so it needed to increase output  but in so doing ran up the pressure in the in the upper portion of the body where there was no arterial restriction in blood flow.  Bryce would have to be opened up after all, for an issue entirely unrelated to the severe tricuspid regurgitation and severely enlarged right atrium.  And it would have to be done fast if we wanted to avoid the use of PGE, a drug used to keep the ductus open so blood can be shunted away from the affected area.  The reason we want to avoid the use of PGE is because of the side effects in its use.  No treatment would lead to cardiac failure as both sides of the heart were being made to work at unsustainable levels for different reasons.  But he would first loose the use and blood flow in his lower body, starting with his legs turning white.  This all hit us like a led hammer in the gut.  I kept face to conduct the conversation and inquiry while Nicole simply recoiled and melted into tears.  I explained that she had been through a tremendous amount and had not vented the emotion for some time and had certainly come due.  They were not surprised at all and understood exactly why she might react that way.  Both boys having to undergo somewhat major surgery in their first week of life, both for reasons not anticipated after all the anticipated difficulties were more than enough to produce some let-off. 

So our feelings about the day, our energy levels and gung-ho were altered.  From optimism, to discouragement to resignation and reflection.  As I walked the lower halls to get an afternoon snack from the cafeteria my heart burned to have my family back together again, with our boys, whole, rebuilding our relationship with our beloved Eden who is growing so much without us and to have the cheer and support of all our adoring children.  They come, I go, we have a glimpse, then it ends and it always feels like something is torn out of me when I go or they go and Nicole went three weeks without seeing any of the children.  Nicole pined for a bit of normalcy tonight after we fell into the bed for the first time side by side.  She wanted to paint the girls nails, read them a book, HOLD EDEN – something she has not been able to do since February.  Even when we were home post TTTS-op, she had to watch the kids rather than hands on participate.  Now the babies are out and she is in pain and recovering and weak, but the fear for the boys within and the restrictions are somewhat altered, somewhat lifted and she, we, want to be a family together again – it has now been almost six weeks away.  And it’s just so hard to keep them here as we focus on the boys and there are all manner of restrictions on kids visiting the NICU or CICU and we are a large family with space issues and a high maintenance, high-energy Eden as well.  So we had to let them go early this last time because when it became clear that River was in for surgery, as much as we wanted them here, we just could not juggle it all, even with all the help. 

Yet, there is good as well.  The surgery does require them to open the chest but not the heart.  It does not require by-pass.  It is a somewhat simple resection though it will take some time and his tiny frame so frail and tiny present other unique challenges.  It has become more and more apparent that we are in the right place and that our landing here and “getting stuck” here in April was not an accident.  Every department, every nurse has impressed us.  We have now worked with several surgeons, Cardiology, ENT, Colorectal (GI), Fetal Care, and Neonatology and we have been so impressed and touched by their care and the level of their concern for our entire experience.  We were visited by a social worker, the charge nurses on both floors, a pastor, and a massage/touch therapist just today. Everywhere we go folks are aware of our boys, their story, even their names.  And everyone is working to get them together and get us home.  Nothing has gone like we wanted it to, but it has gone as well as it could for a painful situation.  And though Eden has now formed care relationships with Kelly, Peggers, and Laura rather than her parents, we know that a bit of time back together and we will be her go-to again.  And these trials have tightened us, and given our kids an even greater longing, care, compassion, and love for their two new brothers.  I have to take inventory of the blessings even as the storms blow over to prevent myself from sinking into silly places of self-pity, even despair.  And I do, we do, we know we rest in the most unyielding love imaginable in the care of our creator.  The roller-coater continues.  It now looks to be five, six weeks or more before our family will be hole and we will be home.  We may loose our whole summer with our kids but I do believe we will make it through and I still believe we will all be the better from it.  As a matter of fact, if I had a dollar for every time our big five have been complimented to me while they have been here, I would be a rich man.  Folks literally stared as we ate our lunch at the RMH on Wednesday and before we got up two mothers could not resist stating how amazed they were at how we functioned together, and how well behaved the kids were.  Even the NICU nurse on another case came up to me out of her way to rave about our kids and the Child Life Social Worker that escorted the kids around the hospital could not stop telling us how beautiful and well behaved they are.  Indeed, we have been blessed.  Our kids have been a blessing rather than a burden through this tough time.  And my family has been amazing, especially Peggers and Kelly and the kids adopted aunt Laura.    Our twins are strong, and beautiful and obviously demonstrating their acceptance and resolve.  We are blessed even though we are tried and we hurt. 

Kids meeting Brothers

Meeting Bryce for the first time

Mommy's first time holding her baby River, all with her other littles (without Eden) looking on.

Nurse talk

Bryce holding Daddy's hand

Eden was not allowed in the NICU to see River, but this is the first family shot with him.

A couple kisses - see our little Sunshine (Sophie) sweetly kissing her brother.

Introduction to brother River

One caring, loving, wonderful big sister.

T is so proud to have more brothers.

Sister Love

The Big Birthday

How do you take inventory on a day such as today in the life of a Chattanooga May?  It all seems like a bit much to take in really.  When we awake, Peggers, Kelly, and Meg come over to see us into the prep room and the team begins their work.  Nicole is smiling and in high spirits, I am reflective and quiet (yes, I can be quiet).  Nicole tends to get a bit chatty and even frivolous when she is nervous, but it’s a rather pleasant reaction to an unpleasant feeling so no one could ever fault her.  At 9:30 on the nose she is rolled into the O.R. and I am waiting in scrubs baggy enough to break my fall from 10,000 feet.  When I am called back, the sights are overwhelming.  14 people in the room.  Three in surgical, one at our heads (the anesthesiologist) and four persons per station to receive the boys then a couple of principals or floaters.  Dr. Habli, of the Fetal Care team who we have grown quite fond of was in the lead post in extraction and we were told at just before the cut that Children’s cardiology team had called and insisted that Bryce be transported to Children’s to their care regardless of his condition. 

Tears trickled down Nicole’s cheeks as it all began and she felt sure going in that she might fall apart somewhat and make things difficult.  But I put my mouth right into her ear and held her hand and prayed.  Just as the procedure began I prayed a repeating prayer of surrender and one of faith.  She seemed somewhat comforted by the spiritual connection because she held her cool amazingly well for someone who was always somewhat terrified of a C-Section and had 14 folks standing around staring at her womb as it was opened up.  River was pulled out first and came out screaming, pelting his protest in a heartening and healthy way.  Then Bryce, who was top and breach was pulled out by his feet and we heard narry a peep from him for several minutes then he began to wimper as they attended him, each in their own corners.  When they were dressed and wrapped, they were placed in the same incubator for only a minute before they were removed for transport to the NICU.  I followed the boys back and there things began unfolding. 

The NICU Doctor wanted to keep Bryce with River at Good Sam. So they could be together and so they could stay with Mom, regardless of what Children’s said, but she was only willing to do so if his vitals looked robust.  He came out smaller than River, the Donor, at 4lb. 4oz compared to River’s 4lb. 14oz, but he pinked up quite quick and things looked miraculously promising.  And wait, they were.  Then the various inspections began and when his oxygen numbers came back low, they immediately decided he had to go.  I told them we were certainly fine with that because we had already reconciled ourselves to that agenda.  So the work carried on as they dressed and inserted various lines into Bryce and cleaned and examined River and I ran out leaving Peggers with the boys so I could check on Nicole and deliver a report to her.  When I came back, the head of the NICU wanted some words with me concerning River.  River?  Really?   What on earth.  He was supposed to come out perfect, he looked perfect, he squalled like a champ and his oxy numbers were a healthy 99%.  But a full anatomical exam revealed that he had an imperforated anus.  He had no hole to evacuate solid waste.  She had no idea if that defect pointed to further system defects concealed inside, though often it does, but she also confided that it could be something as simple as a thin membrane of skin having closed an otherwise developed waste system.  But he was not going to be able to consume, because he could not waste and time was somewhat short to deal with the problem lest he become backed up, bloated and infected.  So suddenly, both of our boys were going to different places at Cincy Children’s leaving a worried and proud momma behind. 

With a pit stop to say bye to mom, Bryce and I boarded NICU mobile for transport to Children’s and the plan was that I would hitch a return ride and escort River as well.  However, one thing after another, after signing Bryce in downstairs, they had already begun his EKG and Echo and I was not admitted to his room in the CICU until they were done with their examinations.  By the time I had completed my consult with cardiology after being admitted to his room, I was called back down to sign in River because he too had just arrived though he was taken to the NICU two floors down in the same building.  So I rushed through to get to him and was met by the head Doctor in the rather massive NICU as well as the colo/rectal surgeon who had come for an exam of his anatomy.  So here is the low down from cardiology on Bryce and Colo/Recto on River. 

Bryce:  his neonatal echo appeared identical to what we had seen in his fetal exams.  There was no deleterious decline in delivery.  Nothing changed as a matter of fact, he is stubbornly and wonderfully strong and steady.  That does not mean we are out of the weeds, but we have jumped over one major, massive hurdle in our battle to take him home.  However, the coming days there is much to unfold as his anatomy adapts to life on the outside and his lungs relax and we get to witness how well his leaky heart can forward thrust the blood into the lungs to be oxygenated.  Without going into all the possible scenarios, lets just say that it looks very possible that he will adapt well to life on the outside over the next month and be permitted to travel home without surgical intervention.  While there is no certainty, that’s where I am putting my money.  Great thing about that is that with pressure dramatically reduced in the bloated right atrium, with forward ample flow through working and relaxed lungs, it is unlikely that his heart will continue to enlarge at a noticeable rate through the first several years of his life meaning that we can ostensibly kick the surgical can down the road until he is much, much further developed and undertake the reconstructive valve procedure at some later date when the statistical outcomes are OVERWELMINGLY in favor of a full recovery WITHOUT perpetual chemical (drug) dependence.   If the open heart intervention has to happen in the first month or so, his chances of survival are around 20% from what Rathod in Boston tells me.  If the procedure is preformed say around 14 years of age, he has a 95% chance of recovery.  But judging from how well he has tolerated delivery and how he was able to pump and breath on his own and how his heart manifest NO other signs of sickness save the enlargement and the massive leak in the tricuspid, I would say the odds are in favor of later intervention.  I just can’t even believe how strong he has been, what a fighter he is, and how overwhelmingly obvious that God had in mind a plan we would find most accommodating.   Just the fact that we have covered so much ground and lept over so many hurdles and come out ready to keep running is a truly remarkable feet alone and suggests that further hurdles might be cleared as well. 

River:  Tomorrow at 11 they are installing a pick line through a vein to the top of his heart because however this thing unfolds, he will not be able to consume food or momma milk for his sustenance and nutrients for some time.  His rectum is not connected to his anus and his anus is not open as I said.  The question we have not had answered is how discordant it is.  If the rectum connected to another organ, say the kidney, or if it is some distance from the anus, they will have to install a shunt and bag to allow him to relieve gas and waste for approximately three months when they would be able to open him up and reconstruct the system.  However, if the distance is slight, they will be able to perform something less invasive by opening the anus and pulling the rectum to and sowing them together without having to open him up.  We will not know which path we have to take until tomorrow.  However, either way, he will not be able to use the muscle either way for some period of time, hence the pick line to his heart to pump his needed nutrients directly into his bloodstream preventing use of his digestive system.  He will be taken to radiology tomorrow at 11 because they have to use ultrasound to find a receiving vein in his arm, then insert a hollow needle into the vein to tread the feeding line to his heart then inspect their work with x-rays.  The colo/rectal surgeon did tell me though they have heaps of experience with all manner of waste system reconstruction, he has very little experience with this particular condition in a premature baby, according to him they are almost always term born with this condition and much larger than our boys.  Mind you our boys are HUGE compared to what we thought they might be, but still quite small by his standards.  They conducted x-rays and will consult with us in the morning before the installation of the pick line to describe his full interior condition as well as their prescribed plan of attack.  So after the installation of the pick line, he will have another procedure regardless to either install a bypass and bag or make the connection with minimal intervention. 

Around six I returned to Good Sam just in time to greet the arrival of our other six (yes, even EDEN came!) who were lovingly transported from Chattanooga from wondernanny Laura and her husband Tyler in my mom’s minivan.  Kelly, Meg, the kids and I enjoyed some Skyline chili in the room with Momma Nicole then Kelly took Eden to her room because she had not napped all day (and is not allowed to stay at RMH in my room because of fire code restrictions and the fact that the other five are with me) and had become quite testy.  So, our larger five, Mommy and I hunkered down for some prayer time, cuddle time, and a partial watch of Snow White. 

So now where do we go?  I am not sure.  If all runs well, it looks like we may be returning to Chattanooga anywhere from 5 weeks to three months or longer.  Bryce has to demonstrate his hearts ability to fully function without further decline and has several hurdles to jump before everyone is comfortable letting him go without intervention.  River has one reconstruction or another which may come soon, may come later, but either way, significantly extends his time in the NICU and recovery from the anticipated best case 2-week scenario.  Mom, once she can mobilize a bit post-op, has a long road to rebuild her own body having been on bedrest since February and having virtually no movement at all out of the bed in the last five weeks of our hospital stay pre-delivery.  June 12^th we have another scheduled scope on her trachea to inspect her stenosis and will possibly schedule another dilation for her while we are here.  Our plan is to dilate one more time post-pregnancy and see if we can go a year or more between dilations.  If we can, we will be able to avoid tracheal resection.  However, she has been dilated four times in the past year alone and if that rapid rate of close continues, she will require tracheal reconstruction as well.  Good new there as well though.  Her airway has remained relatively open longer since the last dilation in late February than any dilation preceding so we have hope that the stenosis is slowing down to a manageable rate.  Regardless, she has a long road to recovery from this traumatic pregnancy as well. 

All that said, this has been a stupendous day.  Our boys are both beautiful and BLOND (yes, Nicole was really rooting for someone in her camp before our reproductive days were over), but we have a family full of light headed, blue eyed beauty’s (save Kai who is blond with brown eyes) and seemingly just added two more the stacked roster.  Both boys are a GREAT size for Mono/Mono, TTTS twins (whose cords were significantly entangled and neither one connected to the placenta).  In spite of the shock in River’s birth defect, the possibly of full recovery and “normalcy” in the long run for both of our boys looks quite possible and promising and we have one wonderful, love filled family ready to walk with them every step of the way.  Our kids have matured and demonstrated unceasing sacrifice and love through all these ordeals.  They have given up much of what they wanted for their spring and summer and done so with joyful hearts.  They have come to show responsibility and love in countless ways from loving notes and pictures left round the house for Nicole and I, to the passion they have for one another, especially their younger siblings Eden, Bryce, and River.  The love filled bond between Nicole and I has been substantially fertilized as has our faith and confidence in a God who is love.  Our spiritual lives has deepened through dependence and relationship, through the experience of overwhelming grace even in adversity and the awe inspiring love of His people.  We are tuckered.  A bit overwhelmed at the moment.  Somewhat concerned about what lay ahead, but at the same time, we can rest, not because it’s over and we are out of the weeds, but because we can let go, trust, and follow where we are led.  God does not speak to us.  I have never heard his voice and I doubt I every will.  I instinctively mistrust the claims of those who say God told them to do something, as in they heard an audible voice, or a strong conviction in their heart, not because I know they are wrong, not at all, and not even because I have never had that same experience, but because more often than not when I have heard those words it has been to justify some of the most ungodly behavior.  We are called to see the unseen, to have faith in something we cannot see but we can know.  I know that grace is infinite in supply, I know that love is stronger than fear, and I know that in the end, light will overtake the darkness and redemption will be complete.  You will never hear me talk of knowing the mind of God.  Are you kidding me?  I am a tiny speck of a mind sullied with selfishness and sin compared to the scope and perfection of a creator, but you will hear me claim with the deepest existential conviction that this mind that is impossibly more perfect and superior to my own is perfectly good, and overwhelmingly loving and gracious.  One day I may wax more philosophical, but for today, we walk by faith in tinted shades and stormy waves around us. 

Big Little Goods at Dixmyth and Clifton

Monday kicked off with my own Echo Cardiagram which was uneventful save the strange experience of seeing my own heart beat and flap and pump on a TV screen in front of me.  I have not seen the report but feel certain my pump house is in order.  The Echo was ordered simply as a precaution because my Dad and Bryce both have congenital heart defects, both leaking valves, albeit different valves with very different leak rates.  Also, my blood pressure has been headed back down toward earth without medication and the two measurements taken pre and post Echo put it significantly lower than any time in the past three weeks. 

Next up was our last fetal echo pre-birth.  All in all, it was pretty exciting.  River's almost right at 4 lbs.  while Bryce's weight came in at 4lb. 4oz.  Wow, honestly, we never anticipate giving birth to two boys so well developed.  There was no change in the sickness of his heart though it had enlarged a bit but not enough to create an emergency.  Blood movement as well as valve functionality remained the same throughout.  Still a very bad leak in the tricuspid, but still no leak in the pulmonary valve which means there is forward thrust out of the heart toward the lungs.  This is obviously of utmost importance to carry the child through delivery and give him a shot right out of the womb as he transitions off of Nicole's life support system and has to oxygenate his blood on his own (though there may be mechanical assistance for a while).  The fact that his pulmonary valve has not failed to prevent backflow inspite of the regurgitation in the preceding valve has been remarkable and has been one of the most important attractions to optimism. 

To cap it all off, we got another bit of good news today when Dr. Elluru scoped Nicole to check out her tracheal stenosis.  While there has been some tightening, it seems that a primary cause of her difficulty in breathing comes from the cohabitation of two little men inside of her preventing her from being able to fully contract her diaphragm.  This also means that the pace of the inflammation which closes her airway has slowed somewhat and may become manageable post delivery with annual dilations rather than a tracheal resection.  This also means that they feel comfortable with her going into the O.R. for delivery and feel free to intubate her trachea should they have to resort to general anesthesia during extraction. 

To top off a string of encouragements, Nicole was afforded some exciting addendums to her medical field trips. After the Fetal Echo on Monday we had lunch with an elder from the local PCA church I have connected with.  Ernie is and Indian from Boston who is in the last months of his 8 year residency in research neurology and psychiatry.  He is in fact the only specialist research doctor in Cincinnati to double these two disciplines and bridge these different departments in pediatric practice.  What's remarkable is how focused he has remained and how much he and his family have devoted to his passion to advance understanding and treatment in his fields.  In the past eight years he has not been afforded a single full weeks vacation though he and his English wife gave birth to two children while he was in med-school.  The support I have received and the warm welcome this past Sunday at Faith Pres. has been a big help to us here, as have been the friends I have made at the Ronald McDonald House.  We have not only been afforded world class care here by the cardiologists, MFMs, Fetal Care Team, and our ENT Elluru, but I have found supportive community.  As an aside, I had an interesting conversation with a Croatian pediatric surgeon who had come here for two months to observe treatment and surgical procedures in the colol/rectal department at Cincinnati Children's which he claimed is the leading center in the world for this field.  As a matter of fact, Cincinnati ranks number ONE in 8 different medical disciplines in the U.S. and number two or three overall depending upon how you slice it.  Boston and Philly tie in top rank which technically puts Cincy in the number two slot, but makes it the third highest ranked institution.  This is one reason why the RMH is the fourth largest in the world and is set to add on another entire wing to house bone-marrow transplant patients who have auto-immune disorders.  Finally, Nicole was able to set foot in my home-away-from-home (RMH) today in route back to Good Sam and was amazed at what she saw. 

I have had to make a conscious decision to see these trials as a time to grow and to concentrate on all the material presented as fertilizer.  There have been times when I did and wanted to simply live in survival.  To lock down and commit to doing only what needs be done to get by.  I have found myself in that mindset more than once.  The problem is, in a reactive posture, succumbing as a sort of victim's predicament, I become blind to all the wonderful gifts I am, we are being offered.  Not only gifts of new people and new experience, but the gifts of growth and lots of it.  This has been an incredible voyage to bond us together even more firmly in our marriage.  Spiritually we tend to mature most when we have little alternative to let go and trust in God and in so doing see great things come to past.  In life, though we may always know in principal that letting go and letting God provides the best blueprint for full living, we slip in and out of the illusion of control and must discipline both our will and our minds to keep proper perspective and cling to humility with confidence in our weakness.  Yet there is opportunity to gain in mental focus as well.  To concentrate on making the most off, of opportunism, of being open to gifts, goodness, and new relationships.  There is the chance to turn our minds to what we are leaning, how we are growing, and to maintain gratitude for both growth and grace.  This is one reason why I have committed myself to learning the streets up here.  It is not my goal to come here and go from here with only our boys.  It is my goal to come here and leave from here with everything this trial, this place, this experience has to offer us.  And don't get me wrong, I am no Carpe Dium icon.  Far from it.  But I am grateful not only for how God has held our little boys so lovingly in His hands but how we have seen and felt that same attentive care. 

Less than one week to D-day!  Then a new chapter begins!

Medical Update - May 16th - almost 32.5 weeks.

Last night packed a scare.  During the last monitoring of the day (when they track both the boy's heartbeats for an hour or two), Bryce's pulse dropped, as it is inclined to do from time to time, but this drop was very far and sustained longer than any other drop by far.  The nurses literally came running in, put Nicole on oxygen and had her roll over then over again to encourage him to move (in case he was pinching his cord).  He did pull out of it and sustained a pretty good rate thereafter save one more dip that was not as dramatic.  These pulse descents seem to come right after Nicole has a contraction, last night, like clockwork.  Thankfully, they will not allow her to endure labor for Bryce may not tolerate full blown labor.  But for a moment, both Nicole and I were prepared to be rushed to delivery in an emergency C-section to remove the boys. 

So, some might ask why the team decided to keep the boys cooking considering the risks of cord entanglement in mono-mono twins.  I know our doctor back home, Dr. Harnsberger was very concerned that the pregnancy was being allowed to carry on.  So I put that question to our visiting MFM yesterday.  Cardiology said that they were fine either way, at 32 or 34 weeks and did not think it would have much an impact either way.  However, the Fetal Care team, including Dr. Lim, Dr. Habli, and Dr. Polzin were essentially responsible for the choice to carry it on.  While they typically take the twins at 32 weeks in mono-mono situations, they decided in our case to extend.  Several reasons.  One: There is no hard and fast rule about 32 weeks in mono-mono.  Some schools go to 34.  Few go to 36 if they can.  32 is more common, but the debate on when to intervene there is far from settled.  But their choice had to do with BOTH boys.  Two: She said they were prepared to handle one sick boy, Bryce, and we anticipate him being sick when he is born, but they were not excited about handling two sick boys if say River's lungs were still underdeveloped and he could not be simply stabilized.  So the extra 2 weeks was in part to help insure that there was little chance of River having complications due to prematurity.  Then there is three.  Bryce. His heart has tolerated his condition miraculously well in the womb, so, it is obvious, there is a benefit to him being in his mother's fortress.  Delivery is going to be difficult and dicey most likely and his heart could turn either way or not turn at all, but there is a significant enough chance that the dramatic change in pressure and his bodies functionality could trigger very serious problems in getting blood to the lungs to be oxygenated.  So why not keep him where he has been growing stronger safely to better prepare him for the transition as well.  Then there is the lungs in Bryce too.  His have less room to develop than River because of his enlarged heart.  So they could really do with more time.  We know we have a cardiac issue, we don't want to find a significant pulmonary issue added to the pile of complications.  All of this reasoning made sense to us and comforted us, but the dangers of keeping him in there also manifest last night when our pulses were raised as we watched that number go from 135 to 100 to 90 to 80 to 70 to 60 .... 

Nicole seemingly caught the boys turning on video the other day with dramatic footage of feet pushing hard against her body.  Presumably, that is when Bryce turned head down, head to head with his brother.  It is uncommon for twins to turn at this stage in the game because of size/space issues, but he did.  Those turns can be dangerous though because of the proximity of the boys and the lack or boundary between the two.  However, we considered this position preferable to the one Monday when River had Bryce's head locked between his knees.  They have upped the order for Ultrasounds to three a week from two a week and about 6 hours of heart monitoring a day now.  This is tricky territory.  We have our final Echo lined up for Monday morning and feel a lot more comfortable going into that because Bryce has held so steady in the womb for so long.  Every time they have come back and said, no change, that has been a miracle in and of itself. 

We are okay.  I have given up concerning myself on my blood pressure issue and it seems to be creeping down the right direction.  I will most likely have my own Echo Cardiagram in the next couple of weeks and we have already scheduled a scope for Nicole with Dr. Elluru post delivery because her breathing is becoming more strained.  I am glad that we have each other as we go through this.  It has both deepened our love and our respect for one another.  I love how God is working in us and our kids to make our great little family even stronger and tighter.  And we are eternally grateful to Peggers (and Kelly, even Martha), who have made great sacrifice of their own to keep our kids.  Eden has had more lovin' from Peggers, Kelly, Martha, and Laura (our beloved nannie) than she would have even had at home and I am encouraged to note in my short visits home that even with this distance from my last born daughter, she remains a good Daddy's girl =).

Unlikely Triumphs from unlikely follk

     There have been no major developments of late.  In the middle of this quiet waiting period times seems to crawl at times but then we look back and wonder how it all passed.  But there have been milestones and one of those milestones has been gigantic for our boys.  We have now been here in Cincinnati for three weeks and Nicole has held up remarkably well.  She has had very few bouts with self-pity and only a couple of bouts that led to a minute of bitterness (mere minutes mind you).  The hardest sting came for her on Mother's Day.  I had left Friday morning early for Chattanooga and returned late Saturday night, so she was all alone those two days preceding.  Then I did not arrive to her room till 10:30 the morning of Mother's Day, but even though she would not want me telling you, I received a couple of texts from her that hinted at anger at her state that morning.  No doubt brought about by self-pity.  By the time I got to the room, it was gone.  The entire attitude problem was something she could poke fun of, even understanding how she let herself fall into it and what she used to get out of it.  But here is why I mention it.  Why I am being candid about her short battle: because who among us would not spend entire days in the dark pits of self-pity if we were in her shoes?  Who of us would not have grown angrily impatient with our predicament?  Pelvic Rest since January.  Bed Rest since February 25th.  Back pain, discomfort, deteriorating breathing physically.  Surgery and recovery in the midst of it.  Then constant monitoring, echo and ultrasound, one after the other, often times quite painful, up to three in a week.  Then there is the loss of control, the loss of participation, the loss of the nurturer role with Eden, and all the while, in spite of all she has given up every step of the way, things grow more murky and more complicated.  We go from TTTS to a rare congenital and very compromising heart defect to the rupture of the membrane between the boys to the risks posed by their sac free floating and so on.  To have your kids 5 hours away each day and be sleeping alone in a hospital bed, hardly able to move any more.  I don't know about you, but I get a bit stir crazy after four consecutive hours in a hospital room.  I don't know what time I have spent in self-pity, but it may be more than her and I have suffered far less.  She lives in fear, every time those monitors are on and Bryce's heart dips too long she just about looses her breath, yet she does not resort to anger (a by-product of fear nod Mr. Gray).  She has tried to look charitably upon those who have attacked her heartlessly and selfishly in this time.  And she has made some hard choices and hard stands that had to be made but were difficult and painful to make all in her weakened state.  Okay, if I am painting the portrait of a superhuman, that is the partly the point.  The point is that many of us might meet despair, not just self-pity.  Many of us might live for days in contempt for our circumstance.  Some will say that she is just doing what a momma does.  And it is, the really good ones.  But for most of us, somewhere along the way selfishness would have taken hard hold and started playing games with our spiritual disposition.  This little mother is durable.  Not just in body, but in mind and spirit.  And yes I realize there are many others who have and are suffering far worse, but how often do we context and compare our suffering on the global scale when we are in the midst of it and it carries on and on and demands we give up all to the cause? 

And what is even more remarkable is that this description of this little fighting mother is nothing like the girl that lived only for self for decades, scarred by others and scarred by her own selfishness.  Her life was more like a junk yard at times than a garden worthy of gazing at.  And though she somehow always had a compassionate heart, that side of her was often lost as she ran from pain by heaping more on.  I can relate.  My story is much the same.  But I am not sure how God orchestrated this transformation, from the girl she has told me tales of to the woman I know today.  I am also sure that she could not even tell you how God did it.  It was like a good, slow bake, not so full of glorious pivotal moments, just steady daily leading in her heart to Him.  And as her heart came closer to her maker, it was reformed, reborn, and remade by His love.  I am not here to tell her story of old.  She is not as verbose nor glass wall as I am.  If she ever wants her story to be known and told she will come to that point on her own if she needs to and she will tell it, but I think only if it might serve another's good.  I don't think she would do it to bring her glory.  I honestly don't think she could be bothered by that motivation.  But I am telling a story of our journey together and her spirit today that should and could give hope to someone who has none.  I am also wanting to encourage her and lift her up and tell of something beautiful that she would not share with you.  She is not superhuman.  NIcole is not even super mom.  But she is a great human and she is a great mom and I think she would find it safe to say, that is to the glory of God and though she may not count her labors and sacrifices today as giving Glory to something far greater than herself, I think she might say she is doing it for love of our boys.  I don't know.  It's a hunch.  But how far a little light can travel and how much it can illumine and how much glory can be given from an unremarkable hospital room two states from home. 

So the milestone, again. The meat of the matter.  Today we reached 32 weeks, give or take depending upon the accuracy of our ruler.  Everyone was very clear early on, from Dr. Harnsberger to the Fetal Care Team in our initial consult pre-surgical in February that 32 weeks is the level of prematurity where most complications from prematurity disappear or very significantly diminish. The constant fear was that the boys would have to be taken early because at any moment Bryce might go into rapid decline and potentially complicate, harm, or kill his brother who is indirectly connected.  And to take Bryce early might offer little chance to save him but would certainly borrow trouble for River who was healthy and thriving.  But so is Bryce.  In spite of his severe leak through the tricuspid, his heart has not behaved as the experts expected.  It has responded with the same sort of determination and resilience that Nicole has demonstrated.   His heart has been like a ship that won't be sunk.  So now we can rest easier knowing we have crossed past many real and potential complications that could have piled on because of prematurity.  The boys could come at any time and we can find some assurance that River will be just perfect.  As for his identical brother, it could go either way, but I would have to say, he has beat the odds so much and so long and held on so strong that even those most guarded about their outlook, those who have seen it all have started to see great hope and feel that hope for us.  This journey is not over yet and we have some very major hurdles to overcome still with Bryce especially, but I hope that anyone who has followed along somewhat so far is impressed by some of the things that do not make real rational since like how could our boys be so big and strong in the womb today having fought through and still fighting some very major life-threatening obstacles?  And how could Nicole who once upon a time would not give up a Friday night out for much of anything become someone who could give up everything for someone she cannot even look in the eye?  And how did I go from alcoholic narcissist to become the sort of husband and father I have become?  And how could we have built such a beautiful family, such a close knit team that even the folks here at Ronald McDonald House talk about it with one another after seeing me here with our kids?  The things we were both best at building was brokenness, so how did we get to the point we are today where we have built what we have today in our lives and in our family?  Two words:  grace and love.  The unyielding love of God and the unmerited Grace of God.

A rather odd anniversary

Today is our anniversary, but it has by no means been a normal day.  Just the same, we are so glad that God has given us one another, that these boys are still with us, and that we are together in our greatest trials.

Last night I (Frank) took my blood pressure at the University of Cincinnati fitness gym and it came back high.  Very high. Stage two hypertension.  I took it five minutes later and it came back still alarmingly high.  Nicole's nurse told me to go to the emergency room because my numbers were stroke numbers (180/110), but I punted cause it was a machine and machines are not always calibrated right.  So this morning we have a very important Echo Cardiagram on the heart of both boys, however, most of the attention is obviously paid to Bryce in these affairs.  The results were very welcome!  There has been no meaningful change in the overall condition of his heart over the last two weeks.  He continues to defy expectation and hold so strong.  His pulmonary valve is not leaking, blood is effectively being thrust through the body in spite of the sever regurgitation in the tricuspid (coming before the PV).  His heart has not enlarged any further.  He has not developed an arrhythmia, the pressure is high, very high in his heart but that is actually good.  His walls have thickened, but that is good as well, a good reaction to a bad condition.  This was such a great relief!  All of it.

We spoke at length with the head of Fetal Cardiology at Cincinnati Children's and while he was candid about the odds, meaning, he admitted that many kids with a heart sick like this are lost after birth, our Bryce has not only tolerated it well but his heart has actually responded well and does not appear to have become alarmingly sick.  While there is absolutely no way to know which way he will go, the Dr. also said that it is possible he will require no assistance and could be released relatively quick which would mean after around 30-45 days post delivery.

The obstetric findings yesterday seemed to argue for a delivery sooner, as in at 32 weeks (this Monday) rather than 34 weeks and cardiology said they did not feel that it made much a difference either way from their position.  So all the information was turned over to the Fetal Care team, Dr. Habli, Dr. Polzine, and Dr. Lim to fashion a game plane that weighs the risks of keeping the boys in (Mono/Mono) against the risks of taking them earlier than we might otherwise.  We are still waiting on our consult with them to map out a plan of delivery.  Whatever that plan may be, it may change at any moment if the boys have different designs or if entanglement puts them in a compromising position.  And speaking of entanglement, Bryce's heart rate dipped for a prolonged time during a contraction in this afternoon's monitoring keeping the monitors on Nicole an hour extra.  While it did send off alarm bells, the rest of his chart looked great.  Finally, both boys measure over 3 lbs. now and their growth has beens steady but the rate of growth has slowed lately and is below normal.  This is not abnormal for twins but it may contribute to a decision to take the boys sooner (32 weeks) rather than latest (34 weeks).

So I did step into the ER today and started to check myself in but backed away.  I would really like to be able to wait to deal with the hypertension till we have some plan with the boys and I would like to do it with the Heart Institute at Children's. Cincy Children's has an adult heart institute focused on congenital heart disease (such as Bryce's) and Dr. Michaelfelder is writing a referral for an Echo on me.  Their fetal team all recommended I have my heart checked (it never has been) because my dad had a congenital heart defect (leaking Mitral Valve) and one of my son's has one in the form of displastic Tricuspid.  It would be my preference to look at the whole cardiac picture at one time and to plan that around the boys but I did feel very strange all day and I think the knowledge of the problem might have compounded the problem by creating more stress.  I felt deflated for a moment.  I have been the one on my feet, on the go, doing what has to be done for Nicole, the boys, the family and so on so it was discouraging to think that something might compromise my ability to perform right now.  That said, realistically, I believe it can be corrected and I am optimistically doubtful that they will discover any leakage or long standing heart defects in my own Echo.  I think I just about hit a wall for a moment when Nicole called and said that Bryce had dipped alarmingly long and I ran back from the RMH to Good Sam, but my walls tend to be only short fences that need jumping over.  Nicole did take matters in her own hands as she panicked and repositioned her body - rolled over which almost immediately relieved the Bryce's cord compression and his pulse recovered.

So, tonight we have big plans to take it easy in the room.  I grabbed her some clothes from a thrift shop so she could fancy up a touch for our anniversary, bought some flowers and a vase, and I am going to get indian take out and we are going to watch the new Les Miserables for our big night of doing nothing much.  God's presence and goodness have been blatantly obvious to us through this time.  The love of our family, friends and church family has been amazingly encouraging and even empowering.  And we know, come what may, we will be in God's perfect plan and will have been strengthened so much along the way, not only in our faith and spiritual life, but in our love for one another, our trust in one another, and even drawn closer still to our wonderful, beautiful, amazing kids who have been remarkably durable and adaptable.  I would also like to mention how very little Nicole has complained through all of this.  She has undergone some significant family of origen drama, taken from her children including her Eden and confined to a bed or sofa since February and here in a Cincy hospital heading into week three and she has not shown self-pity nor a speck of bitterness at her state.  She has submitted to whatever has been called of her for the sake of rescuing our smallest and weakest.  I have no idea how God took such as mess as she had made of herself and made such a good-hearted rock, but mysteriously, in his love, He has fashioned quite a woman and I am blessed to have her.