More Complication, more Unknown, more Opportunity to shut up and Listen

We have now been home from Cincinnati for over a month, living in our home now four roughly two weeks after tremendous effort from our church family to make it hospitable to small human life.  The landing back into life here was a bit rough, as is sorting out life with twin infants on top of it all, but we have been, no matter how petty my attitude might become for a moment, tremendously blessed.  I suppose I could write a book over the three dimensional aspect of our experience with TTTS and the other complications which seized our affairs in February and never let go.  The things I heard in it, thought through it, convictions and questions.  I have been unpacking all that material, I continue to unpack it and it continues to convict and mold me as I listen to it then and today as if it were all in one moment.  But our days must march on.  For indeed they are full.  The list of things that need doing here at the house is monumentally large, and, for a spell, disheartening.  I even grew a bit angry by the grip this house and its expansion and renovation has laid on my life at a time when there is so much of more import to concentrate on.  I have eased back into work and really started to catch my stride and my wind of late, and that has been refreshing, though at times caused conflict as I seek to concentrate through the maze of complications life continues to toss our way. 

It has not helped any emotional adaption to current reality that our aunt Martha has been so gripped by illness of late.  Every emotion I could throw at the topic I have tried, just to arrive back to where everything must get to in the end if I am to find some measure of peace about it: acceptance.  Acceptance.  What more can I say.  It is not my place to presently unpack on that issue.  She remains a heroic, radiant light of a love for us all, even in moments that she can hardly speak from her pain she can manage to crack a smile or show some grace.  She has many friends from all over.  She has gathered them well in her places: Dickyville, Tate, Home and so on.  Folks from all walks and bents.  She expressed a wish that she would still find some light to flicker out of her in the hope of her first love in Christ as she walks through this present fire, and I for one have not seen it dim.  This, and our own immediate adventures with our boys has posed some serious questions in how I pray.  But more on that in a moment. 

Concerning our boys.  They are growing like weeds.  Even Bryce is now fed solely from the breast, no more fart making supplements for him (though he can still clear a room).  Both are strong, though River has been seemingly herculean for some time as they can perform bodily feats we are not accustomed to seeing in kids their age.  They fuss, eat, sleep, poop and sometimes, when you are holding them, flaunt about aimlessly with big open eyes.  There’s not a lot of mutual interaction at this point, my least favorite stage: the least interactive stage of life, but all systems seem to be in good order.  However, and that’s what prompted this missive.  There is seemingly always a however in this case. 

We returned to Cincinnati at the end of July for River’s 8 week post-op checkup.  Dr. Dickie, our colo/rectal specialist has a dual concentration in vascular disorders as well.  Odd that.  River was born with a defect we had not forseen: an imperforated anus.  He was born in the only place where the Pena procedure, or Pena pull-through as an immediate surgical correction was pioneered.  Had he been born elsewhere, he would have been given a colostomy bag and sent home.  As it were, he was operated on second day and all his machinery was connected, an anus was formed, and we were sent home when he was discharged, with Nicole having to dilate that opening in increasing succession twice a day for the past two months.  Yet, as “fate” would have it, our Dr. Dickey, a Pena protégé, happens to have an eye and expertise in a what seems to be another complication and it may have been one we might not have known of had we not been connected to her by his no-bottom birth defect.  We thought the mark on his forehead, on Bryce’s as well, was an angel kiss, a birthmark, that like Eden’s, fades in time only to be revealed when they are crying or angry.  The doctors here thought nothing of their marks, but Dr. Dickey showed some concern that his mark may be a Vascular Malformation, or, a port wine stain – something much more impacting than a birth mark.  However, she also initially expressed concern not only because of the intensity of the discoloration, but the size, placement, and reaching for his eyes.  Evidently, vascular malformations around the eyes often times point to possible complications with blood pressure in the eyes: ie, glaucoma.  So, we have been ordered to have their eyes checked and possibly medicated should signs of heightened pressure present.  However, the proximity of the malformations to the eyes are not the extent of the potential complications, but this remains very much in the unknown.  These particular capillary malformations can be associated with lesions of the brain (and eye), called Sturge-Weber Syndrome and can lead to neurological developmental impairment, seizures, because the meninges (covering around the brain) may also be affected.  In severe cases, paralysis can set in on one side of the body and severe retardation may be resultant.  While not all kids who have capillary malformations on the forehead and eyelids have the congenital condition of Sturge-Weber Syndrome, these malformations are associated with this condition and the symptoms of this condition can vary greatly from mild to severe.  What this means is, beyond the eye checkup, we are recommended to seek an MRI of the brain to determine if they may in fact have this syndrome or if the malformation is strictly more superficial.  If, as we obviously hope, it is superficial only, the boys will both need to undergo an uncomfortable a pulsed-dye laser treatment several times to potentially destroy the damaging blood vessels without damaging the skin thus preventing the boys from developing the dark purple staining which can even raise from normal skin level as it hardens in time if left untreated.  So it appears, at the least, we have a bit more to road to how medically speaking, even in the best case scenario as we will need to seek laser treatment from a skilled treatment surgeon in this field, and frequently have their eyes checked for glaucoma.  We do still have the dysplastic tricuspid to deal with in Bryce’s heart, and, our team in Cincinnati may advocate an open heart to attempt repair of the valve as early as 10 months old depending upon how much regurgitation his echo’s continue to read.  His latest did not detect any lessening of the leak post second coarchtation repair, but it could still improve enough in time to push intervention even further back. 

This brings me to the topic of prayer.  How do I pray.  Honestly, I just don’t know.  And I can’t pretend to tell you how to approach the topic concerning intervention for others is concerned either.  I feel less comfortable asking for a specific outcome these days as I feel that is too impositional and self-centered.  Besides, we do not know the why.  We do not know what is good for us, good for all, good for the overall plan, we only know what we want and what we don’t want, but if we have lived long enough, we know what we want may be that which hurts us in the end, and what we don’t want, ie, hurt, may be that which helps us in the end.  So what do I pray?  I certainly do not want to see my boys suffer.  I am certainly deeply pained to see Martha, Freda, Patty, suffer.  So I guess I have to pray that good would be done, and that whatever that is, we would, I would be given the eyes to see it, the good, even though it may look terribly bad at the time.  There was a reason our plans were taken from us this year.  A reason I had to spend months at the RMH in Cincy away from our fam, six weeks with Nicole in the hospital.  It wasn’t for kicks and giggles and it wasn’t so I could taste Ohio ice cream.  I hate that Martha’s illness does cause her to suffer. Yes, it has really angered me.  But that may be in the plan and no amount of pleading may change that.  I cannot see any good that could come of it off-hand, or is coming from it, and then I can when I pray that my heart is only open.  Open to hear.  Still enough to see.  Because often I can’t.  Often I have cotton in my ears, blinders over my eyes, and mucus around my heart.  So right now, my prayer for my own life is one of acceptance.  That I will accept what ever it is I am dealt today.  That I will accept whatever it is I am dealt tomorrow.  But that is about me.  That is still selfish in nature.  Still essentially self-centered.  So How do I pray for River, Bryce, Martha, Freda?  Do I pray for exact outcomes?  Sometimes I do.  I really do, even though I am never sure about it, I am there for the asking.  Or do I pray that God would be glorified, come what may?  Surely I do.  Surely He will.  So why even pray it?  Is that prayer not an act of worship and submission meant to open us to the broader reality that God has to share with us?  None-the-less, I do ask for prayer, whatever way, whatever type, whatever silent worship you feel led to enter into, for our beautiful Martha, and our two little boys, my dad, and all those so closely connected to them, each and every one. 

Another milestone, another gracious day given - surgical guarded success

I am seated by Bryce’s side, now late at night.  Myself, alone.  My beautiful bride is back in our taxing room with River and two other of our kids.  I hope she sleeps.  I doubt it frankly.  

To be honest, she, and myself less, suffered more from this last take-from-home surprise than all the previous jolts in our journey.  We left so full, free, high even from our early release …. From the truly remarkable strength of our little men.  These little fighters who must know they are already so loved, so wanted, so doted over, that they must know each of their community and familial loves first hand.  They will fight through to see us all through it seems.  For every response to a terrible situation has been astounding. Yes, abnormal even.  Take the latest with our Bryce.  We came up following a BP cuff read and confirming echo which read the difference in blood pressure from his arm to his leg at 50 points.  His leg pulse was almost indiscernible.  So he was transferred under medical protection.  When we arrived, I led the EMS through the streets of Cincy and the process of entry in the emergency wing and we were direct admitted to the room beside the one he inhabited after his birth.  That night, the difference read the same.  Things were dicey. How long could his body tolerate such paltry blood supply to the lower portion before his kidneys started shutting down and his legs changing color?  Then the next day, things seemed to level out.  The difference as read by cuff declined to 25, which shoved our case from operate now to operate very soon.  So stable was our boy, so normal his GI functions that we were transferred Saturday to the floor, out of the CICU.  Here in this spacious room on level six of the A building, his brother can actually sleep at the foot of his crib with him and our kids have unlimited access to their brother.  That makes it infinitely easier on us. 

We had our meetings today, though not with Dr. Morales, the chief of cardiovascular surgery who will perform the operation.  In our consult with Dr. Cnota, from team of cardiologists, we learned a good bit more.  He claims that in Dr. Michelfelder’s 22+ years of experience in pediatric and fetal cardiology, he had never seen a coarchtation occur in a TTTS twin.  They have had a few valve anomalies such as Bryce’s dysplastic tricuspid that manifest unresolved after the TTTS laser correction, but never a case connecting to coarchtation.  Furthermore, it is very rare for a coarchation to occur in two different places around the aortic arch.  Nonetheless, it appears that the narrowing in his aortic arch has caused pressure to increase in his lungs because the left ventricle is overworking to service the impeded lower organs thus increasing pressure at or above the heart to hypertensic levels.  This increase in pressure has applied heightened pressure once again against the left ventricle (which pumps blood to the lungs) causing the level or tricuspid regurgitation to increase to levels measured just after delivery when resistance in the lungs was greatest.  This is not alarming, and should most likely resolve after the coarchation is removed, but the tricuspid continues to leak vigorously either way.  So now, fast forward to the day of surgery.

Dr. Morales paid us a visit around 8 am to discuss his approach.  Evidently, the team meeting yesterday had many attending and was a rather lively debate with many attending cardiologists as well as the surgeons.  The meeting adjourned and the plan was to open his chest, put Bryce on by-pass, and perform the arch advancement with possible elective tackling of the dysplastic tricuspid repair.  However, Dr. Morales spent the evening weighing all the input he had received and simply came to tell us that he was going in, putting Bryce on by-pass and was going to fix what needed to be fixed the best way to fix it.  He had not set agenda on how to pull that off.  Furthermore, he had already determined NOT to address the tricuspid issue, primarily for two reasons.  One, if he attempts a repair, he circumvents the bodies opportunity to possibly resolve the issue over time, on its own.  A natural repair is always a preferred repair.  And thought the leak is not likely to ever stop short of intervention, it is possible it could slow to the point that medication could sufficiently treat it.  The other has to do with the physiology of the valve material at this early age.  Evidently, reshaping a valve this early is far less likely to produce the desired outcome because of how supple the material is.  However, over the next 6 months or so, the flesh in the valve alters and evolves and success in a repair effort becomes much more probable.  So, he thought the risks of going back in were much less than the potential loss of either preventing natural repair or insuring a greater chance of success in the repair at a later date, as in, between his 8^th and 12^th month of life.  He was going to look at the valve with an internal echo, but felt somewhat convicted to heed the counsel of the cardiologists and resist the temptation to intervene so early. 

Fast-forward once again to post-op consult at 5 pm.   Bryce was taken from my arms outside the OR at 9 AM, so this was an all day affair.  Morales said the procedure was very complicated.  It was, in his words, difficult to perform for several reasons.  One, the coarchtation was limited to one place, however, there had been substantial thickening in the wall of the aortic arch over a large segment, essentially the entire arch.  Because of this, it made not sense to perform the arch advancement where the descending portion is attached frontally just above the heart and the descending line is cut off and sewn into a basket.  This because there would still be the problem of the thickened wall and narrowed passage to the ascending arteries, but also because his descending line was not plastic enough to relocate to that extent.  So, he had to filet a long section of the arch and graft a patch over this portion composed of Bryce’s own pericardium that roughly doubled the size of the aorta in this area.  The flesh of the artery will grow over the patch in time.  The other complicating factor was the placement of the laryngeal nerve, which had essentially braided itself, abnormally, around the aorta.  This nerve had to be moved to complete the reconstruction of the arch.  In doing so, it had to be stretched.  That stretch may have damaged the nerve with possible side effects of poor utilization of the vocal cords for noise making and difficulty swallowing liquid without choking.  He seemed genuinely concerned about these possible side effects from the procedure but was not certain it would occur.  Furthermore, it is something that can resolve in 2 to 3 months so long as the nerve was not inalterably damaged. 

Finally, the team here is somewhat confounded by this case.  They have no idea what would have caused the second coarchtation, again in an atypical location and disassociated from the ductus.  They also have no idea what would have caused the aortic line to thicken as it had.  Because of the nature of the repair, we are very unlikely to have issues again with any of the troubled area which was repaired, however, it remains a concern to Nicole and I that if this anomalous narrowing and thickening could have occurred as it had, in various places as it did, that it might happen again with another portion of the aorta or another artery elsewhere in the body.  Because it was apparent that there was problematic tissue in this specific area, they believe there is greater likelihood it is an isolated incident.  But we will not know till time has proven so. 

Our petition for our youngest son is as follows: 

1)   That there would be no damage to the nerve and consequent complications associated with it.

2)   That this would in fact proof to be an isolated incident attributable in part to defective tissue.

3)   That extensive inflation would not occur where sutures were made or new flesh was attached because Bryce does not seem to tolerate foreign intervention in his vessels well.

4)   That the tricuspid leak would wane to the point where it is medically manageable and a reconstructive surgery will not be required, at least until well into adulthood. 

5)   Finally, that his recovery would clip along at an acceptable rate, that he will take to eating once again, breathing normally on his own, and that we might be discharged within 7-10 days. 

Please forgive me at this point for drawing to a close at the end of a rather dry presentation of medical data.  I haven’t the mental or emotional reserves to offer any personal reflection.  I cannot say we are dramatically relieved.  We are not high fiving.  We do not feel in the clear.  We have never really been in the clear and every time we think the end of the tunnel might be approaching, the light turns out to be a train.  So we walk in faith, one step, one day at a time.  Doing what we can to make the most of our days, the most of our relationships, the most of our struggle even, and doggedly clinging to a complete trust in a plan we cannot know.  Too much celebration would be ill-advised.  Too much foreboding would amount to self-pity.  So we pleasantly trust our way through the unknown.  And THANK YOU each and every one of you that has said a prayer, spared a compassionate word or thought, given support, and cared about our family.  We are deeply grateful. 

6-22-13 - A Longer Road

I am going to try and describe what is going on as best I can for those that have followed our story and supported us along the way.  Basically, another coarchtation occurred in Bryce's aorta.  The previous coarc was caused by the closing of the ductus arteriosis, a fetal shunt used to bypass the lungs in utero.  In his case, as is the most typical cause, his ductus tissue had grown into the aorta and as the ductus closed, it closed the descending portion of the aorta.  They were able to remove the portion with the stenosis by entering between his ribs, thus avoiding bypass.  Now it has occurred again, but in a different location.  That is very unusual.  Between 10 and 20 percent of repaired coarchtations manifest again, but typically later in life as the aorta grows and the sutured area does not grow correspondingly.  Another cause of future recurrence would be the inflammation of the scar tissue.  So it was very unusual that it would have presented so quickly, just two weeks after the removal of the offending portion.  However, this area of closing is further up the arch of the aorta, in closer proximity to the connection to the heart than the previous and the cause is obviously not associated with the closing of the ductus.  So, there appears to be a rather large area of Bryce's aorta constructed out of defective tissue.  Also, the manifestation of this problem when the left side of his heart is normal and all valves on that side fully formed is also unusual.  All in all, it adds up to a peculiar phenomena. 

The surgical repair will require the opening of his chest and placing his heart on bypass and a full reconstruction of his arch, rather, essentially eliminating his arch all together.  In his case, they are most likely to cut the descending aorta and close the aorta at the point just past where the two last ascending branches fork off.  This is right as the arch begins its descent.  They would more or less create a cul de sac at this point and then move the descending aorta to the frontal portion of the arch, near the connection to the heart, before the ascending service branches fork off.  This is an extensive reconstruction and the elimination of the arch function has been off-limits for a long period of time, but more recently has been adopted as a proper therapeutic approach to various aggressive aortic malformations.  They have not determined that this will be the exact nature of his proceedure, but the cardiologist said it is most likely considering Bryce's anatomy. 

There will also be more earnest discussions about opening the heart while on bypass and attempting a tricuspid valve reconstruction.  Bypass is a last and desperate approach in premature babies because of the serious risks of cerebral perfusion (brain damage).  However, when a baby has reached their term age at 37 weeks of life or greater (Bryce will be at 38 weeks - 4 outside the womb - when the surgery is undertaken), the risks of brain damage from bypass diminish to make it much more acceptable in situations where it is needed.  There are competing schools of thought even in this institution about whether to tackle the tricuspid issue this young when it is not essential.  The cardiologists would recommend putting it off as long as possible and performing the procedure years down the road.  However, the surgical team, led by Moralas who will be performing this procedure, often advocates a more aggressive approach.  I think it all depends on how quickly Moralas believes he can enter the heart and manipulate the valve because the longer Bryce is on bypass, the greater the chance of brain damage becomes.  This decision has not been made and will not be made until full conference on Tuesday morning.  So what we know for sure now is that Wednesday or Thursday they will perform surgery.  We know his chest will be open and he will be placed on bypass.  We know that regardless of how extensive the reconstruction is, his recovery will be more difficult and he will remain intubated much longer this time.  So, right now, it looks like we will be here another two weeks best case scenario.  And yes I am on the wait list for a room at the RMH because right now we are staying at a Hampton Inn in Covington, KY just across the river from Cincinnati. 

This has all been more emotionally taxing than all our previous hurdles, at least for Nicole.  When we arrived home and our family was united, the relief, satisfaction and the feeling of safety and having finally arrived was intense.  We did not anticipate being torn apart again, especially so soon.  Nicole had just begun rebuilding her Mom's connection to Eden who has come to see Peggers and Kelly as her primary care providers (unless I am around).  Yes, Eden remains a pretty staunch Daddy's girl.  It has been hard missing so much time with all of the kids and so many pivotal moment in Eden's development.  It has been hard to accept that this will carry on a bit longer, further into the summer and we are living here and there (because we cannot take River into the CICU).  She has broken down in tears more frequently since the discovery of the issue from the echo in Chattanooga than during any other stage of this journey.  She desperately did not want to leave home and family so soon and she was terrified at what unknown lay ahead for our little Bryce.  So, to mitigate the emotional difficulty, I may return Nicole and River to Chattanooga tomorrow (Sunday) then come back to Cincy alone on Monday.  Nicole would then drive up in the van on Wednesday afternoon with all of the kids and we would hopefully have quarters at the RMH by that time.  So our fight carries on and we are still not in the clear but we remains even more trusting of our perfectly loving Father than ever before.  Yes we are broken.  No we are not made of iron.  Yes our insecurities can manifest in obnoxious ways at times and fear can play out in secondary emotions.  And yes, at times we want to escape or change the way we feel but nothing on this earth offers a meaningful solution other than letting go, and walking in faith, somewhat blind, with a significant limp, but walking forward none-the-less.

A Moving Departure

Last night was a rough night.  Little sleep with a restless River.  Feeling a bit off balance, we sluggishly started at the day but perked up with a bit of coffee in the community kitchen during breakfast surrounded by our RHM friends cooing at our little boy.  Then my phone rang and it was the hospital.  I was deep in conversation with a friend holding River so I handed the phone to Nicole.  At first she sounded concerned but ended with the word amazing.  It was the charge nurse at the NICU suggesting, just suggesting that there was a good possibility Bryce may be discharged tomorrow.  The attending Doctor holds his cards close to his chest, but he let on enough for the nurse staff to know where this was going.  So I high tailed it over to see our amazing little man.  I talked discharge with our nurse and had a good feed with Bryce before coming back so Nicole could go on over.  Nicole told the charge nurse that if he was discharged, we would want to leave for Chattanooga right away which set some things in motion. 

While River had his post NICU pediatric followup, he had not had his post-op appointment with Dr. Dickie in the colorectal department and that was not slated till next week so the charge nurse made a call and Dr. Dickie agreed to wait after her getting-off time so she could see us today in order that we might leave tomorrow.  There was one other thing however.  Our cardiology team here needed to have a conversation with the pediatric cardiologist in Chattanooga who would handle Bryce’s case locally and I had to connect those dots.  In the appointment with Dr. Dickie, we learned that folks born with his birth defect most often fight constipation their whole life.  We also learned that we had to play a role in insuring that the anus constructed was not closed and his passage expanded to a normal size.  That was all well and good but Dr. Dickie also drew attention to River’s heart-shaped “birth mark” on his forehead and conveyed a concern that it could be nevus flammeus, a vascular malformation called port-wine stain.  She said the length and size of it differentiated it from an angel’s kiss and we would have to keep an eye on it over the next year or so because if it does not begin to disappear, it will progressively get worse, darker, with raised veins and its proximity could lead to glaucoma or even seizures.   It’s not the biggest hurdle to jump by any means, and we are VERY inclined to believe it, like Eden’s smaller kiss, will fade during his first two years.  Though, with River specifically, there are little islands of similar discoloration elsewhere on his body as well, from the sides of his nose to his back, spotted about, where as Bryce has a similar though less pronounced and slightly smaller mark on his head without the other red spots about his body.  By the end of the appointment we were ready for the long road in River’s rectal recovery and better armed with many things to watch for. 

During that appointment the attending cardiologist over Bryce’s case called me to discuss discharge and the road ahead.  And this is remarkable, really.  He described Bryce’s last Echo before discharge from the CICU and suggested that both he and Dr. Michaelfelder thought it demonstrated a slight decline in the amount of blood regurgitating through the faulty tricuspid valve.  He said if this is the beginning of a trend, meaning, the backflow continues to decrease as his lung pressure is continually reduced over the next year, it is possible that Bryce may not need reconstructive valve surgery for a very long time if at all.  Very long time as in decades!  However, because his leak is so severe, he also said that the surgeons in Cincinnati would strongly advocate early intervention if the rate does not continue to decline.  Early intervention as in within the first two years of his life.  He also admitted that the cardiologists were in a different school of thought than the heart surgeons here, but if it looked similar a year from now, they would probably concede turf to the surgeons recommendation that we intervene early.  He did say that Bryce looked great, all things considered and he was guardedly optimistic by the latest read. 

So we leave.  Both boys doing wonderfully, both boys well, and yes, both boys with ongoing issues that will increase their level of care.  The fact that we are leaving with both boys at all,  much less so soon is honestly breath-taking.  Even the charge nurse said she could not have anticipated Bryce bouncing back so well, so quickly post-op on his heart and frankly thought our discharge would have been one, two weeks down the road.  If you have followed the story to date, you will understand how profoundly moved and extremely grateful we were shown such grace by God and that our boys are so strong.  As we started packing though, the reality of leaving was setting in.  While I am terribly eager to be home, with our family again as one, back in the daily life of all our littles, I felt like I was being made to let go of a tremendous attachment.  I suppose had I come here with tunnel minded vision to get-in, get-out clean and uncontaminated by the town, the people, the community, the house, I wouldn’t feel any pang of pain as we pack up to pull away.  But I do.  I understand I have an unusual attachment to intentional community and I have always thrived most in that context, but to leave with such a loving victory in hand, in the light of a miraculous event, and all the compounding emotions … to leave our bonds to this shelter, these people, their children, their smiles even in suffering …. To have been touched by it, by them and so deeply grateful, and so powerfully moved ….  It is a hard letting go.  But it is not just our community at the RMH.  It’s our hugging Dr. Ellaru, the greeters at the NICU who took such interest in our boys, the nurses who worked in Young Life for years, Dr. Habli and the good folks at Good Sam.  It was a time, an event, many relationships, and many of them will now pass away.  But they were the right thing at the right time.  And to have watered an attachment to a local church, and have become friends with some members, and even the Chinese volunteer at the RMH that I sat with several times who bought gifts for our boys and gave a book she had illustrated to our kids and talked books, writing, plot and ideals.  The time was rich and richly rewarding.  And though Nicole has only been on the outside for two plus weeks, she too has developed an attachment, though less, maybe significantly less because of her compressed time but she got a taste of how connectional a time it was for me when the colorectal surgeon I met at the Gym from Croatia found us in the surgical waiting room today and told me he had been thinking of me and was even looking out for me hoping he would find me that day.  He has only ten days left in the US before he returns home to his family whom he misses much, but Marcos is a good man and I thank God I was able to work out with him, exchange emails, send family photos and so on.  Even Barbara the guest manager here at the RMH said that they all love us and do not want to see us go.  Just the other day they took our story to feature in their newsletter and had me speak to a group of local leaders responsible for strategic giving in greater Cincinnati, sharing our story, with Nicole at my side, wiping tears away the entire time. But their care for us and our boys is a reflection compared to our gratitude, respect, and fondness of them.  

I, we, have much more to unpack existentially from this time as we move ahead.  Often times, processing doesn’t begin, the emotional processing of an intense time until we are back in the familiar.  At home.  I have found every time I have been home has been tremendously emotionally introspective as I reflect on the journey thus far from the comfortable familiar.  I have a hunch of about a hundred other takeaways, but I know that we are projects, our lives are here to make us and mold us so we might be of greater service to God and our fellow man and this time has been and will be used tremendously to that end.  But we will be back.  In just a month, maybe a bit more we have to bring River back for surgical followup and we plan to bring the whole family and make is a reconnection time with some fun stuff too – say a play trip to King’s Island with the tickets we won from the RMH.  We have been blessed tremendously and held so tightly every step of the way that God’s grace and love has been blazingly obvious throughout it all.  And even though our kids have had their breakdowns when they did not know if they could take the separation any longer, they were also loved and cared for tremendously by some of the greatest folks earth has to offer back home and though they have missed us, they have not gone a minute without being tremendously loved.  For that we are grateful.  For their willingness to walk through this together in trust and patience, eager and loving for their little brother’s who seemingly cost them “so much” this spring and summer, we have been moved.  It’s obvious we have been extraordinarily blessed and it has also become more and more obvious to me why – so that the God of perfect love might be made manifest in our lives and that manifestation might show to anyone looking in.  So we walk forward in full confidence, not sure how we are going to pull it all together or hold it all together and not sure where the twin’s medical issues may take us in the future, but we walk knowing where ever it is, whatever it is, it will be good.