Another Unplanned Dutch Vacation - surviving a war against ISS.

My, my, my, what a week, and where do I start.  My last unloading happened almost one week ago, Sunday.  Sunday turned into a difficult day, a very difficult day indeed.  For Nicole’s recovery from her Cricotracheal resection was anything but orthodox.  Anything but predictable.  And, honestly, even surprised her surgeon, Dr. Rutter, who is a leading part of the world’s foremost team in open airway work performing 5 times the airway reconstructions as any other institution.  Which is to say, they have seen it all.  But this place excels in the land of the unexpected.  That’s one big reason we were here again.

A combination of pain and swelling in her airway became miserably debilitating  by Sunday and did not start to really improve until Wednesday. However, though the pain, the anxiety, and the nausea were managed with some success through medication which kept Nicole sedated almost straight through for most of Sunday and again most of Monday, nothing seemed to have a positive impact on her breathing.  The strider continued and though she was eventually able to walk across the room to pee by late Wednesday, doing so significantly compromised her oxygen supply.  She weekly lumbered back into bed and emergently reached for the oxygen mask in hopes of recuperating before she might be set off in a painful and halting coughing fit.  Coughing did cause problems.  Not only did it slightly tear the sown tissue in her airway causing a pocket of air to form in the wall of her trachea, but the high velocity air agitated the swelling wound even further thus contributing to more swelling.  Even more desperate for her, the coughing was typically an attempt on part of her body to evacuate mucus, blood, or fluid from her lungs, but with her airway so compromised, the slighted progress in that regard often became further blockage which at times caused her to panic.  There was in effect a bit of a nasty cycle taking place. 

Come Thursday, things had settled down quite a bit with the coughing an pain, but her ability to breath was still terribly restricted.  This did not add up.  Swelling peaks day two and day three and it should have improved by Tuesday, further on Wednesday, and even further still on Thursday.  Something was amiss.  Then Thursday evening Dr. Rutter, his apprentice, and the adult team from University Hospital paid us a visit in the room.  At this time, Dr. Rutter told us that only 10% of CTR patients suffer from swelling and he knew that Nicole would be one of these 10% as he was sowing her up because the adverse reaction started almost immediately. But the goal is to nudge  the patient through the peak without obtrusive intervention in order to aid faster and more thorough healing.  This aid requires all sorts of tricks, but none of these tricks were having a positive impact on Nicole.  We seemed to sit in mystery, though Dr. Rutter suggested that her swelling might be exceptionally aggressive.  A nasal scope was scheduled by the team for the morning to assess whether the time slot booked for the OR at 1PM could be put off or must move forward.  Mike Bowen, the program coordinator was all but certain the scope would reveal improving conditions and we would be on our way home late Friday.  He prepped us for the best.  But Nicole was not ready to go home.  She knew something was wrong and it terrified her and she wanted help out of this terrifying hole.  She kept quiet with a smile as he spoke, hoping beyond hope he would prove right, but knowing somehow in her gut, he could not be. 

I was eager to say the least.  I popped up at 5 AM and shot over to the ICU to await the team by 5:30.  They finally came together around 8:30 and the scope was connected to a large screen monitor which allowed all of us in the room to watch the snake as it wound its way through her nose down toward her lungs.  Once we made it to the vocal cords, it was painfully obvious that something had gone wrong.  It appeared that her airway had swollen almost entirely shut. All we could see from this scope was a tiny hole, just larger than a coffee straw where air might pass through.  I knew before Dr. Rutter spoke we were headed to the OR.  His words confirmed what she felt and I saw, this required immediate intervention.  At the time the team thought the complication was attributable to swelling and Dr. Rutter pronounced Nicole exceptionally gifted at swelling and noted that it had been a long time since he had to surgically intervene in a CTR patient after the initial procedure.  But the game was on. 

Now, this is the bit I did not discuss with Nicole, but it’s okay now that it has past.  Soon after they left, I had to run back to the hotel to alter our reservation.  I felt cut, almost shattered.  I don’t think it was fear, but maybe fatigue and colossal disappointment.  I am sure underneath it all was a heavy dose of subliminal fear, but fear rarely presents itself to me as the obvious emotion.  It plays a more crafty game in distorting my perspective.  Whatever it was, I felt crushed, and though I did not weep my eyes out, I did display outward signs of grief in the safe comfort of my own car.  I did not want her to know I had anything but confidence.  But I was rocked and shocked and trying to find some stable emotional plane to occupy.  She had smiled when they told her that she was OR bound again.  Smiled because she claimed to know it was coming and was just comforted they were addressing the issue before we were sent home.  Whatever the issue might be.  And, I am sure she felt relief, because one thing I cannot grasp it what emotions and panic come over a person when they cannot get air into their lungs.  She described it to the nurses as the feeling of drowning.  The body with a desperate desire to claim air and O2 for the body but simply unable to get it in.  The times I held my breath under water, I always knew I could pop up.  She lacked that confidence so many times. 

But the moment came when I understood I was not alone in feeling pain, loss, or fear as she headed back again.  As the transport team retrieved her rolling bed to escort her down to surgery, she held my hand tight and the tears came.  It was a look of helpless fear.  That’s what I saw but I cannot put feeling in her heart.  I embraced her and held her hand and in time, she steeled her heart for what was to come.  Then our beloved pastor Render called just before she was taken to the OR.  I put the phone in her ear so he could pray with us and the tears came again.  Any circumstance which afforded the occasion for emotion to come out, it just came running out.  This prayer and that familiar journey from the room to the OR were two such occasions. 

It all happened so fast.  Dr. Rutter and his team of ENT doctors and surgeons found me walking toward them in the hall.  With pictures, the clearly explained what had happened.  Scar tissue had connected across, even around her airway, and formed a thin blockade of tissue.  This was not swelling that would retreat; this was a mortal obstruction to her ability to live.  And, this was incredibly rare.  Having to surgically intervene post CTR (resection) was odd enough, but encountering such a physical determination to dismantle the patient was exceptional.  Dr. Rutter used a balloon to dilate the airway and break apart this dam, then he used tiny surgical snips to carve some of the excess flesh from the affected area.  What was left was spectacularly open, but it had unusual tissue just the same. 

The results were immediate.  When she came to, she was more alert, in less pain, and feeling like she had a new lease on life.  It was, really, spectacular as I also felt like I had been given my wife back.  We have great cause for optimism now, but there is no guarantee.  The scar tissue which remains needs to effectively retreat and be absorbed into the tracheal wall.  If this does not occur, another dilation may need to take place or, worse, another subglottic tracheal stenosis could form requiring another resection.  This is highly, highly unlikely, but the chances are greater with how things unfolded. 

I suppose we must feel what a soldier might feel who has fought for years in a war with his life on the line at the moment a peace is declared.  I have never been that brave man, but I can see a connection.  There is a somber celebration.  You have seen things, felt things, and known things you never wanted to know … in fact, we were not designed to know, but the danger had passed and the future held promise.  It’s a promise which more wisely understands that the world is no one’s oyster as they say.  That we hang by a thread in the hands of a loving, sovereign God.  That our designs are like sand which might blow across the beach.  But it’s a future where the sand can blow.  Our Italian vacation plans have taken us to Holland these many years instead of the planned for and expected Italian coast, but, in a way, on this side of it, even though we did not plan on the flat plains of Holland, we have come to see this peace as a vacation.  Not the one we wanted or paid for, but the one we were rightfully given. 

Hard to breath

It’s been quite some time since I posted anything to this blog, and not for lack of occasion to record.  It’s more consequence of time deprivation, or, more assertive priorities with what time I have.  Work has been particularly consuming, and outside of that, our family is in a demanding phase.  But here we are, back in Cincy, long hospital days, and though caring for Nicole in the ICU is keeping me on my toes and denying me as much “work” time as I thought, I needed to steal a moment this quiet Sunday morning to share with our spiritual family and friends where we are, more specifically, where Nicole is in her recovery. 

We committed to a permanent fix for Nicole’s airway disease less than a year ago.  January or February of 15 seemed to be the best time for everyone concerned, but, as time wore on, the need to take action sooner rather than later started to deny us the option of putting it off further.  It was a combination of factors.  One, according to Dr. Rutter, her surgeon, an ulcer had most likely formed around the stenosis and this ulcer was producing mucus.  With a shrinking airway, this mucus was a problem.  Increasingly a problem the smaller her airway became.  There were several times when the flow was totally impeded and she was unable to breath.  Panic would set in, then dizziness, but each time she was able to clear the blockage before passing out.  Furthermore, the dilations became more aggressive the last two rounds which bought us more time between the treatments, but that time was diminishing.  Dilations delivered diminishing returns.  Her last dilation was in October, and by mid-January, her trachea had closed down to 5 mil from the female norm of 17 mil.  So the path we were on was becoming increasingly unsustainable.  This was, according to our intuition and the experts, the route to take and the time to take it. 

Once we committed to this course, the timing lay in limbo for a while because our doctors practice at Cincinnati Children’s but they needed to secure a block at UC Medical Center for the surgery.  The two research hospitals work hand in hand on many things, but the world’s leading lights in airway work are pediatric primarily.  So finally, on December 10^th, we were given a date for voice labs and surgery.  Transitioning from theory to reality triggered something in Nicole and tossed her into a terrible anxiety.  This anxiety was halting at times, triggering full-blown panic attacks that shut her down.  Thankfully, Dr. Harnsberger was prepared for this, or, at least was not in the least surprised and jumped on top of it right away with the proper medication to contain it.  Panic attacks still surfaced in a milder form, but she had some chemical ice water to throw on them when they reared their ugly little heads. 

Nicole worked very hard trying to set all of her and our household’s affairs in order before our departure for Ohio.  She hardly took a break until we loaded up this past Tuesday morning and hit I-75 North.  That afternoon, she was video scoped at Children’s and her voice was recorded in a secure, sound-proof booth (because there was little doubt that her voice would be altered by the resection), but then we had two days off before surgery Friday morning.  Thursday I ran to Indy on business and Nicole elected to pretty much stay in our hotel room, in bed, resting and trying to relax these two days.  At times, she was an emotional mess, but how could she be otherwise.  Spontaneous bouts of weeping might hit at unexpected times, then pass as soon as they came.  Talking to the kids seemed to magnify her fears because she not only longed to be with them, and to have this cup pass her by, but the fear said things to her designed to produce panic.  Full of fear the night before, God was kind to her and gave her a good night’s sleep.  Myself on the other hand, though I had no feeling of anxiety, I was unable to sleep till roughly 2:30 Am and we had to awake ot 4:30, so even with the aid of two cups coffee, I was still a bit out of sorts.  But again, pre-op, Dr. Rutter, our cut-up of a cutting edge surgeon helped lighten the air and thin our emotional load.  So effective was his good nature and our prayer – not to mention the happy meds – that Nicole was taken back with a nervous smile on her adorable face.

The surgery took 5 hours.  That’s about what they originally anticipated.  However, once they got in there, the area affected by the stenosis was much longer or deeper than the scopes had revealed looking down from above.  Dr. Rutter anticipated removing 1cm of her trachea and cricoid cartilage (which connects the trachea to the vocal cords within the larynx).  Turns out, the stenosis was roughly 2.5 times larger than previously thought.  Dr. Rutter had to resect 1” of her trachea and cricoid, but he was optimistic about recovery. 

Recovery has gotten off to a bumpy start.  We are in the Burn Unit ICU at UC Medical Center for our third day.  While I fully anticipated each day to lighten her pain and burden, it seems to have gone the opposite direction.  The first day, they were either unable or unwilling to get her pain under control and she somewhat over did it, but her low blood pressure prevented them from administering the meds needed to get in front of the pain.  This also prevented any sleep all day until after 1am when they finally gave her morphine after providing her body enough fluid to produce the requisite rise in blood pressure.  The nights have been the hardest for Nicole because I slip out to catch some sleep at the hotel and the night shift nurse is too often MIA.  Last night in particular she was flirting with despair. 

When I got back to the room this morning the ENT team from Children’s was crowded around her.  There was some concern about the swelling around the resected area in her throat.  There was also concern about the reddening of her skin in the upper chest and lower neck which could indicate infection.  Her breathing was wheezy, she was coughing more and periodically she was coughing up blood.  So, one of the doctors cut a stitch out to loosen the skin around the neck drain then ordered a chest x-ray and sent a photo of her upper chest and neck to Dr. Rutter.  This afternoon they are going to draw blood to test for elevated white blood cell count and our nurse has gone to talk to the team about getting something that an ease the soreness and pain associated with swallowing.  The first day out of surgery, she was able to speak, though low and gravely, one could understand her.  Now, in day three she can hardly whisper and is consistently sucking blood or fluid out of her mouth coming up from her throat or lungs.  The pain does not seem to have diminished and she has become weaker with time because it has been so painful for her to eat, she has done precious little for the past few days.  Nicole is communicating with myself and the nursing staff by writing on paper which has frustrated her at times. 

Honestly, it’s hard to put to words how difficult this pain and this battle must be for her.  Today, she has all but shut down.  Breathing is loud and hard.  She does not want to eat or open her eyes.  Presently, getting any response to questions is difficult.  I haven’t a clue what is going on, but I know the staff her seems at a loss on how to ease her suffering.  Morphine has taken the edge off the pain, but there is a biting soreness in swallowing and even breathing at times that the drugs seem powerless to control.  I cannot know what is going on in her heart and in her head because it takes too much to communicate right now, she only conveys immediate needs.  I know there are many who have walked through similarly tough valleys themselves or with loved ones, and I know this journey and battle is not unique to the human story, but it is unique to us.  Us, a sometimes rough, sometimes distant, sometimes hurting, and sometimes even opposing entity, but there is a one and solid us.  She and I and I cannot reach into the dark place where she is right now, but I pray the voice of God will shine on her somehow and it might stave off the noise of despair. 

Hydrocephalus?

Bryce and River, our oh-so-smiling-and-engaging twins turned 9 months the other day.  Nine months living a miracle.  Their smiles, which pop up instantly when one of their peeps appears, can light a room like a lamp.  Somehow, their tiny little faces manage to achieve more smile, encompassing all of their beautiful faces than I am accustomed to seeing.  Bryce in particular ... his smile upon his eyes is as cute and disarming as his cheeks, dimples, two bottom teeth, and spreading lips.  These boys, with deep stains upon their faces and heads are truly beautiful.

On a positive note, if you were not aware and had followed our boys somewhat, the news we received upon Bryce's last Echocardiagram was stupendous.  Surprising. Staggering even.  Dr. J said that his tricuspid leak had become so slight that he could barely hear it.  A diagnosis of dystplastic tricupsid (malformed valve leaflets) before birth is supposed to produce a leak in typical conditions that requires open-heart intervention to reshape the valve.  The age of the intervention depends upon the severity of the leak after birth.  After his second heart surgery that entailed a full expansion of his aortic arch, Dr. Morales, the cardiac surgeon suggested we might be looking at intervention as soon as one year in age. Now, could it be that no intervention will be required?  Either way, some loving force seems to be healing Bryce's valves organically.  You fill in the blanks.

As is the custom nowadays, they were due for the 9 month checkup which we set upon the very day.  I wanted to accompany Mommy because the boys, playful, and lively, have shown no interest nor ability to sit upright.  Many kids at their age are crawling.  All of my others were sitting well before this point.  Granted, our twins were born early, but not radically early.  34 weeks is not a full bake, but it's well enough into the cook to jump past most potential premi complications.  The doctor took that into account but agreed that their development in this regard was delayed and he ordered OT or PT, can't recall, which we will receive at T.C. Thomson's.  This was the main reason I wanted to take off some work time and tote along because I wanted to discuss this issue with him personally.  Their measurements were okay.  Weight gain had picked up significantly from the sluggish pace he observed at six months.  Their height was on par for their weight, though River (larger of the two by two pounds) ranked in the 50th percentile on height and Bryce, well, he was well below in percentages.  But something else caught the doctor's concern.  Something we had not anticipated at all.

You see, at six months, the circumference of their head, as well as it's growth was in keeping with the rest of their anatomical development.  But something happened in the past three months.  These past three months as our fears of their developing Sturge-Weber Syndrome seemed to calm.  The growth of their heads far outran the growth of the rest of their body.  River's head in particular was in the 99th percentile for his age whilst his height was 50th.  Something was causing their heads to grow abnormally fast.  Dr. Meredith suspected it might be Hydrocephalus - a condition described in slang as "water-on-the-brain" though it is actually excessive cerebrospinal fluid.  Normally this stuff performs its very important functions around and through the brain then drains into the blood stream at the base of the brain.  Because our brains are always in production of this fluid, the absorption system is constant.  However, in one with Hydrocephalus, the fluid is not reabsorbed into the blood stream causing buildup in and around the brain.  Babies can accommodate this growth better than adults because their sculls have not closed, however, inevitably, if the condition if not treated, the outcome is calamitous.  The problem is, the most popular form of treatment: installation of a shunt, a catheter, and a valve with an external plumbing system to one-way divert the excess fluid back into the bloodstream typically around the lungs or the heart.  The problem is, this system is prone to problems and most often involves further corrective surgeries for the drainage system and, the system itself can be prone to irregularity.  The valve has to regulate the drainage manually.  Drain too much and the ventricles in the brain can collapse and lead to hemorrhage.  Drain too little and the symptoms of Hydrocephalus present in due time.  There are some advanced alternative treatments that require lasoring in the brain, and if effective, do not entail all the dangers and maintenance of the shunt system.  All our doctor was aware of is the shunt system.  

Nicole said she overheard him discussing in the hall with another doctor.  Apparently he was mystified why the boys presented no other symptoms of the disease yet their head had grown so anomalously.  He ordered an ultrasound of the brain which can occur peeping through the large open spot atop their heads where the scull has not closed.  This should give us some indication if Hydrocephalus is the culprit.  If the test unlayers concern, we will have to move their Cincy MRI forward and head north somewhat soon.  I don't know how this plays into, against, or with the ongoing concern about Sturge-Weber, or if this is some forshadow of that condition.  My gut tells me the two are not connected so a diagnosis of Hydrocephalus if it occurs is not indicative of inevitability of SWS.

I write this at a time when many of us in the CPC family have heavy hearts.  Just tomorrow we will celebrate the beautiful life of a remarkable lady who passed on to her Father just this past week.  Patty was a light to even in her suffering.  I still feel the loss of Freda for Tom and his girls (and the grandkids), and another on our prayer list, Lula, the 10 year old daughter of Lynn's dear friend in Boise also passed onto her real Dad recently.  Meanwhile, Lynn, Gideon and Andy are back in Cincy, where they may still be if we have to pay the north a visit, hoping for some real clarity after a painful biopsy of Gid's lung tissue.  We celebrate as a family with Cynthia and their Ashlyn as her recent chest scan revealed no cancer.  We weep and celebrate and so many times, we do so at the same time, sometimes for the same reason.  We celebrate that Patty is free of pain, though we mourn with her dear family the loss of their beloved.  Such is our approach to tomorrow.  So many gains.  So many miracles, so many celebrations for boys, yet, it seems, so many ongoing causes of concern.  Thank you for your sustaining love and interest in their precious lives.

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

Good hands, grateful heart

So we are back in Cincy, honestly, all things considered, happy to be here.  Let me explain.  During our last visit, just an up and down for a River follow-up with Dr. Dickie, the boys were both diagnosed with a capillary malformation on their foreheads.  Not just a birth mark, or an angel kiss, that like Eden’s kiss, fades with age, no, these are port wine stains.  They darken with age, turn deep purple, and can create blisters and welts.  Considering the location of our boys stains, this could be a significant cosmetic complication if nothing else.  But, there is nothing inherently threatening about these capillary malformations typically, and they can often be treated with some measure of success with a laser capillary ablation.  However, the location, over the eyes, down the nose, forehead, back of the head can represent another potential danger.  Sturge Weber Syndrom.  Not a certainty by any means, just a danger. 

Kids born with these port wine stains on the face see occurrence of SWS about 12-15% of the time.  Yet it is not the stain that causes the disease.  Rather, it is a defect present at birth, congenital as they say, where the capillaries are malformed or exploded around the brain, inside the skull.  Furthermore, location around the eye can trigger glaucoma, or a heightening of the pressure in the eye which can lead to blindness or eye-popping if left untreated. So we had the boys eyes checked several weeks ago and all was clear for the time being, but this is something we will have to do every few months for quite a while.  So, we have been on the lookout for signs of SWS, per the instructions of Dr. Dickie.  And, while we have not seen anything conclusive, we did begin to witness movement, or behavior similar to mild infantile seizures.  Nicole caught the tale end of one of these episodes on her cell camera and we emailed it up to Cincy.  Dr. Dickie quickly convened a quorum of experts to review and put together a game plan, if any was needed at all.  It was decided that the behavior was suspicious enough to merit an EEG to check for irregular brain patterns or seizures.  If the EEG finds irregularities, they will most likely order an early MRI of River’s head to look at the blood flow around the brain and how it may be effecting the development of the brain.  If we find nothing, we will leave without anything conclusive, but we can at least rest easier and put off the MRI till he is age one or greater unless concrete signs manifest sooner. 

 This place is amazing though.  On Sunday, before we left I sent an email to Bryce’s last attending cardiologist up here just letting him know we were going to be here if they wanted to see Bryce.  He called me by 9:30 AM on Monday.  Not his nurse, Dr. Matsen himself called.  Because we have had frequent Echos we decided against looking at Bryce now but he did recommend contacting ENT because of his breathing obstructions.  So I sent an email to Dr. Elluru, the ENT specialist that took Nicole’s case once referred from Chattanooga.  He is a pediatric doctor that works out of CCMCH so he was the logical person to contact.  Within an hour I had received an email from Dr. Elluru and a call from his charge RN seeking to slide us in to have Bryce examined while we are here.  Well, turns out Dr. Elluru, like our Colo/rectal Doctor Dickie works in the vascular malformations department as well and he was rounding in that department at the very time we have an appointment with both River and Bryce, after the EEG, in the vascular department.  So, Dr. Dickie, Dr. Hammil, and Dr. Elluru will all be at our appointment tomorrow and Dr. Elluru may have to scope Bryce. 

Why the fuss about Bryce’s airway?  Give this vid a look:  http://www.youtube.com/watch?v=HnMYCCD61oA  This was taken tonight, at the hospital, with him in a normal sleeping position.  He regularly cocks his head back at a 90 degree angle while he is sleeping, seemingly to open his airway.  You can almost always hear him breathing with a whistle or a rasp and at times it becomes short or strained.   We have brought this up two times with our Bryce’s cardiologist in Chattanooga, but nothing has come of it.  In fact, there has been tremendous confusion and punting between our coordinating pediatrician and our local cardiologist about the possibility of Sturge Weber and the need for an eventual MRI.  In Chattanooga, it is difficult to get answers, difficult to get folks talking, difficult to get things done.  Here in Cindy, we can communicate openly with any and all doctors and they are blazingly responsive and they are all experts, as in world leading doctors in their fields.  I honestly feel VERY humbled that we receive the concern and care we have received here in Cincinnati.  Matter of fact, our Chattanooga based pediatrician has no idea we are up here now. 

So aside from Bryce’s breathing issues, and his leaky tricuspid, what is Sturge Weber Syndrom?  “Sturge–Weber syndrome, sometimes referred to as encephalotrigeminal angiomatosis, is a rare congenitalneurological and skin disorder. It is one of the phakomatoses and is often associated with port-wine stains of the face,glaucoma, seizures, mental retardation, and ipsilateral leptomeningeal angioma. It is characterized by abnormal blood vessels on the brain surface. Normally, only one side of the brain is affected.”  Taken from Wikipedia.  There is also capillary malformation in and around the pia mater almost always on the same side as the birthmark.  This is why we were told to watch for the boys favoring one side over another in movement early on.  This condition causes calcification of tissue and loss of nerve cells in the cerebral cortex.  Symptoms have a broad range but typically include seizures that start in infancy but worsen with age.  Developmental disorders can arise including retardation and about 50% have glaucoma.  Most kids born with this condition will develop seizures in their first year, and those who show these symptoms and are resistant to treatment are very likely to see intellectual impairment. 

The important thing here is that SWS is not deadly if treated, though it may mean we have one or two special needs boys.  While Bryce has not demonstrated any suspicious muscular behavior, his marks are not very dissimilar to River’s and though it does not cover his eye, it is even more present around his head, highly concentrated in the back of his head as well as his forehead and it dips all the way down to the tip of his nose. 

I will have to say that these two boys are amazing in many ways, and I do not often celebrate it.  They are remarkably adorable, so much so, that all the nurses rave about them when they come in and their beaming blue eyes have started to be accompanied by broad smiles, giggles, and little chit-chats.  Though Bryce has been very fussy of late, sometimes inconsolably, today he had a pretty good day, at least in the first half, and can kill you and melt you with his huge smiles and tiny fingers playing across his face as he oogles.  River has been developmentally ahead of Bryce in every way, so if River is presenting symptoms of SWS, it would be no wonder he would present before Bryce if Bryce has the same condition. 

This has been difficult for us.  Surely more for Nicole.  When we returned home after our last visit in early August, she read obsessively about SWS, while I was more dismissive.  I guess her reckoning was that TTTS kids have more problems, and though the odds have been low for each of our complications, we have gotten them, so why should be expect to be spared this one.  Mine is either to remain stubbornly optimistic, or unrealistically functional by blocking out the fear and concern.  I am not sure which one, but most likely a blend of the two.  So when Nicole called me screaming, afraid that River was having a seizure; I was cool, as if I had been expecting it.  No.  I was not.  Intellectually I spoke like I had, because we knew it was a possibility, but I had not accepted that as our fate.  So I took it cool, kicked into get-er-done mode, and starting all this in motion.  While she worries more, it is always my role to reach out to the doctors and aggressively coordinate care.  Nicole is amazing though.  An amazing mother in many ways in spite of her insecurites.  Really.  Many folks could toss so much dirt on her from her Shi---y past they could bury her, but she is not that person any longer.  She has been remade, and somehow, some of her strong characteristics are amazingly strong now. 

I could not talk about it.  I could not put it into words.  I did not even know what I was feeling, but this did indeed hit me like the proverbial MACK truck.  Having twins is hard.  Having special needs twins with another baby, and 5 other kids is harder.  It has been both incredibly rewarding and taxing at the same time.  Since I got the call from N and set this all in motion, I have been irritable.  I have been short with N.  I have even had to apologize to Elise for being short with her.  Saturday tires went out in the van which set me back 500 that I did not see coming, the day before we had to leave to Cincy.  Thankfully, my amazing mom lent us her minivan.  Work has been intense.  So much professional ambition this year was thwarted by the rain, the cold, our time in Cincy, so many factors.  So I think a whole host of fears started playing out in my emotions but not my mind.  Because this past week I have not been the most pleasant person to be around.  The fear of what lay ahead.  The fear of here we go again.  The fear of complete loss of control again.  The fear of some form of loss (just after we lost George).  The fear of my failure.  The fear of our life being upended again and struggling to gather it back together again.  The fear of forward movement stopping dead or halting.  The fear of a life of hard work with high needs boys.  You name it.  The fear.  I could not put words to it, still can’t in a way, but I think it was playing havoc with me.  I felt depressed a day.  Defeated another.  All-together dull.  And I don’t always react like a man when I feel these ways. 

So coming up here was so comforting and freeing.  I feel such a great confidence and acceptance as we loaded up to leave.  We may not win what we want, but daggum we will do what we can for our boys and our family and this is the best that can be done.  And do I have any say?  No.  So I have to get to acceptance.  I have no power to effect the outcome. And as amazing a mom as Nicole is, neither does she.  Those adorable boys are on loan for use to love and raise from the Giver, our God.  He may trust us with more than we bargained for, but gosh, when Christ decided to adopt me, I am sure there have been days in his human form (ha) that he might wish he hadn’t, when I might have hurt or taxed Him more than human form could anticipate.  But he is not human.  And he knew what a smuck I could be and how high needs I could be when he adopted me.  How am I any different to my King than these boys might be to me if they indeed have SWS?