The Big Birthday

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

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

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

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

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

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

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

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

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