Traveling Light
*A quick heads up: In this post, Erin discusses a few specifics related to Wade’s progress + outcomes. For families walking through pregnancy complications, NICU stays and/or specifically a Bladder Outlet Obstruction diagnosis, please take care. We have learned a lot about the complexities of interacting with other families walking these roads. If today isn’t the day you need to absorb another family's/another baby’s progress- thank you for putting this aside and listening to your gut. We love you and we want to be sure our loved ones have the opportunity to set loving, healthy boundaries where needed.
We’re approaching five months in the Cincinnati Children’s NICU as well as a big transition in Wade’s care. When he reaches a couple of growth parameters and about two years of age, Wade will receive a kidney transplant. Between our time in the NICU and transplant time, he will receive daily at home dialysis and make regular visits to the hospital for labs, therapies and consults. Early on in our NICU stay, our nephrology team let us know that where we choose to live as we wait for transplant time should have a high level kidney care center. They listed several cities in the Southeast that would be appropriate places for Wade to live. Our hearts sunk when Knoxville wasn’t listed as a possibility.
Nashville was among our team’s recommended cities. Vanderbilt Children’s has some special nephrology connections to Cincinnati Children’s, and their reputation for kidney care makes Vandy a good match for Wade’s needs. Many of you know that we have family and close friends in Nashville as well. Nashville will be a safe, healthy, supportive place for us to be once we discharge. There’s still been heartbreak over this plan. Phil and I have spent a lot of nights eating takeout, crunching numbers, hypothesizing about the future in various quiet rooms around the hospital. We’ve shed a lot of tears and made a lot of plans in those rooms. Our brains get tied in knots, we get lost in the hypotheticals. Then we walk back into Wade’s room and everything gets simple again. We’re learning more every day about how to care for him. We’re together. We get to live outside the hospital with him one day. The people caring for him here feel like our extended family. His body responds well to dialysis.
We had a special conversation with NICU friends a couple of months ago. Sitting in a break room, they asked us, “How has this time been for you two?” We told them about our hard days, our better days, Wade’s progress. They asked us, “Isn’t it incredible what this place can do for your relationship?” Not a hint of irony or toxic positivity. As our NICU days have stacked up, we know how right they were. It’s unlikely that there will ever be a time in our lives that will be this simple. We’re in a reality where medications that cost $1,000 a pop are administered to our child every day. Money quickly loses its value. We sleep in a room that’s a revolving door of nurses and attendings. Never quiet, never alone. Home isn’t a place, it’s where Wade is. Money, property, time, privacy, predictability, control. We don’t need as much as we think we need. We would never have chosen to open our hands and release control the way we have this year. But thank God.
Wade is doing well on his slow and steady progression on peritoneal dialysis. His next steps will be to have his hemodialysis catheter removed in the OR and then finish his progression of 24/7 peritoneal dialysis. When his peritoneum has been properly prepared, Phil and I will go through training so that we can administer his at home dialysis every night. These steps will happen in this order, and at some point in the process we will transfer to Vanderbilt Children’s. We are currently on their waiting list. Once we get word that they have a bed for Wade, we will be on our way. We know that Nashville is the right next step for our family. Wade’s care, the support of a lot of our closest loved ones, it all makes sense there. Our dream is to take Wade back home to Knoxville one day when the time is right. Till then, we’re traveling light and taking one deliberate step at a time.
Loved ones in Nashville, we can’t wait to see you soon. Wade’s going to have the unexpected blessing of having you in his day to day life. We know we are going to be surprised by joy at every turn.
Knoxville, you are a central part of our family. We talk every day about bringing this baby back to East Tennessee for big walks at Sequoyah. Pizza nights at A Dopo. Fishing days in the Smokies. Cruze Farm dip cones every day of the summer. People waiting to love him through his childhood.
Any day we’ll get the call that it’s time for our next phase. Thank you for loving Wade and holding us up.