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. 

June 7th, Bryce's recovery, River's pending release!

It has been around a week since our last update.  There were questions about whether River would be able to eat a week past his surgery when the X-rays suggested it was time.  There were questions about whether his GI would kick into action, accept, process, and remove waste properly.  Well, those questions have been answered resoundingly!  River is not only eating food directly, but he is taking around 50% of it directly from Nicole while the remainder is given by bottle.   He is not only digesting his food, but his intake has increased every day since he began this past Thursday and he has not only regained the weight he lost post-birth on his PICC line, but he has now surpassed five pounds!  He is producing normal waste in a normal fashion as well!  And while most parents are not too stoked about poopy diapers, for a guy born with his conditions, this is a pretty treasured part of the living process for us.  As a matter of fact, so remarkable has been his development that he is slated for discharge this Monday and will move into the Ronald McDonald House with Nicole and I.  That’s only two weeks in the NICU, and that with significant colorectal corrective surgery.  When I asked the charge nurse about a week ago how long we should anticipate his being there, she listed the five things they look for before discharge and we should expect four to five weeks till we can take him “home”.  Honest, not just making this claim for sensationalism.  So it looks like one down and one to go. 

Where we left off was prior to Bryce’s surgery to remove part of his descending aorta where a very restrictive coarctation had occurred.  The pass through for blood in the effected portion of his aorta was estimated to be only 2mls wide in diameter.  2mls of line to pass all the blood needed for his lower half.  Needless to say, the blood pressure as measured from his leg was roughly 30 points different, lower, than that measured in his arm.  The condition would have inevitably led to heart failure if left untreated so there was simply no choice on whether to surgically intervene or not.  But as far as difficult heart conditions, this was a walk in the park compared to what we were prepped to deal with considering his dysplastic tricuspid.  There was concern that his heart would not tolerate the condition even until surgery so the administration of PGE was considered to keep his ductus aoratus open, but they decided to punt on that till the had to because of the side effects of this drug.  By keeping that fetal line open it would have allowed the heart to shunt blood away from the coarc line relieving pressure in the left ventricle.  However, his heart tolerated the challenges fine and no drugs were administered.  The surgery went off without a hitch and we have extensive photographs of various spots around this aorta, the portion removed, as well as the reconstructed descending line.  As you can imagine, this was a huge relief.  However, he was slow to shake the anesthesia, very slow, and his ability to breath unaided did not return till about 10 AM the morning after.  This response to the doping was so different from that of River that it caused concern and once he did start breathing consistent enough to remove the CPAP line, his breathing seems strained and even difficult.  An X-ray revealed that an air pocket had formed in his chest which may require the insertion of another tube to evacuate, but they wanted to take a wait and see approach before intervention.  As of today, it appears to be dissolving to the point that his breathing is returning to normal. 

So now two days post-op, he seems to be more like his “old” self.  Full of movement, responsive, even feisty.  There are always concerns over whether a small baby will be able to eat without regurgitation after heart surgery but Bryce has been taking food, albeit in limited doses through the coarse of today and only hurled back one feeding, and even then, only a portion.  They are going to continue to give him more milk, to the tune of roughly 5mls increase every feeding and they are also attempting to administer all through the mouth via the bottle rather than the feeding tube kept in on standby inserted through his nose.  They did supplement one time through that line, but he has been taking his limited food effectively.  Almost immediately after surgery his blood pressure in his lower parts returned to normal and there appeared to be an absence of any of the possible side-effects of his intervention.  On another note, he remains dependent on 100% oxygen to satisfactorily saturate his blood and when the gas is removed, his levels has dipped again to the 87% he registered at birth.  While this may become a bigger issue, the current thinking is to slowly wean him off the subsidy prepping his lungs to pick up the slack without a jolt.  If in the next few days he cannot sustain breathing only room air, I am sure there will other concerns. I have to wonder if some of this is due to the severe regurgitation through his Tricuspid valve.  And though his pulmonary valve does not leak and forward flow is clearly detected in sufficient amounts, the level of regurg would hamper the amount of blood making it to his lungs.  I asked the nurse about this today and she could not answer but thought it a good question, though she was also optimistic that he could be set to room air over the next week without complications as his lungs continue to relax and pressure reduce.   Presumably this process should also slightly slow the amount of regurgitation into his Right Atrium through his defective valve.   But at this point it really looks like we dodge the open heart surgical bullet and will be able to deal with his condition once his heart is much more mature – shooting for his teen years.  It remains our prayer that he will be able to move enough blood and his lungs work hard enough to capture the 21% oxygen in our breathing air to satisfy the needs of his entire body without supplementation.  But Bryce has been amazingly strong.  His heart miraculously durable, and honestly, we anticipate him jumping over this hurdle as well in short order as he has many others.  He clearly has a mission and is doggedly determined to carry on and carry it out.  Maybe that mission right now is as simple as getting back to his brother’s side.  They were after all so incredibly connected in the womb and identicals are notoriously connected even on the other side.  As a matter of fact, twins seem to develop stronger and faster when they are in close proximity to one another, even if they are kept in separate hospital cots. 

Interestingly, these two boys have not only demonstrated remarkable resilience, they have also already demonstrated quite different styles and personalities even as everything else merges more and more to mirror image.  Bryce is certainly the more assertive and feisty.  Maybe this is because Bryce, being the recipient, had all the real estate to swim within before the TTTS correction and before their membrane ruptured.  Bryce did continue to reposition himself in the womb even after they were in one sac as River stayed put in one position.  Then River was the donor, the trapped twin, wrapped so tight and pressed so hard against the wall that he had nowhere to move or go till the Laser made things right.  Perhaps its because Bryce has more fluid and higher pressure in his heart, his heart that is very noticeably larger than his brother’s, that makes Bryce more reactive and opinionated, even more active still.  One would have to think that with identical DNA, these very early forces must have played some role in shaping the basic personality types they might possess and setting them up to be both astonishingly similar yet blaringly different at the same time.  Regardless, if you have followed our journey to date, you will note how much we have to be grateful for, how incredibly heartened we are that these boys can and should anticipate growing up side-by-side and that against all odds, these two TTTS fighters have clobbered their opposition every step of the way and sought which tragically falls prey to far too many TTTS baby’s, even after intervention, both donors and recipients alike.  Their place and posture today is a true statement of divine grace.