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.