Home Stretch

*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 familiy’s/another baby’s progress- thank you for putting this aside and listening to your gut. We love you and a part of that is loving, thoughtful, healthy boundaries.

As of today, we are about two weeks away from our induction date. We wake up every morning, amazed that Wade’s had another day to develop and grow. During our recovery time from amnioport surgery, a team from Neonatology came to visit with us. They left us with the encouragement that, “Every day of growth in utero is a help to him!” To have had the privilege of carrying Wade to 32 weeks, then 34, now 35 + is not lost on me. We take every day of growth as a gift we’re not promised.

In our early Cincinnati days, we had a team meeting with a panel of our specialists. We sat and tried to absorb so much information, essentially outlining every possible outcome during and after this pregnancy. We left feeling desperate. Our marching orders were that it was time to go home to Knoxville and begin our series of weekly checkups on Wade’s fluid levels. The plan was to monitor and see if he could maintain healthy fluid with no further fetal interventions. I heard the plan, and my heart went cold. We walked out of the room, found a corner of the hospital and through hot tears, I told Phil “I hate this plan. I feel like we’re being sent away.” Waiting and observing felt like inaction to me.

Months later, we see how no phase of this process was wasted. We got to go home. We got to sleep in our bed. We got to hug friends. We got to be in the city we love, in the house we love. I turned 30 during this time. We adjusted to the realities of our pregnancy in a place that is familiar, easy. Then, like before, we got the news that it was time to go back to Cincinnati. Earlier than we’d thought. Again, as we loaded up the car and said goodbye to our house, I told Phil, “I just wish we had been able to make it further. I don’t want to leave our home.”

I can tell you now that we needed this time to adjust to Cincinnati. We’ve gotten to be in an apartment here with Red. We’ve gotten used to, not just used to- attached to, our amnioinfusion appointments. Three times a week, we get to go into the clinic, see Wade, watch him move, watch him stretch and move as we top off his fluid levels. We get to see the gentle rocking back and forth of his chest as he practices breathing. Our team shares our excitement. They’re patient with our questions. They get on our level and include us in the medicine that’s happening.

Funny enough, now we’re preparing for our next relocation. We moved from home, to our Cincinnati apartment, and soon we’ll be living at the Cincinnati Children’s Hospital NICU. Our spaces are getting smaller. It feels like we leave more and more of our stuff behind us with each move. There’s this correlation going on.

Less stuff, less space - bigger world, higher stakes, more undivided attention on the things that last.

Last week was another panel meeting. This time, the focus was to talk about Wade’s birth plan. Flashbacks of our first Team Meeting had our stomachs churning in the days prior. We felt so overloaded with information last time. So incapable of holding all the hypotheticals. Our day started with an MRI that would provide imaging for us to discuss in the meeting. As we sat down to review images, I started to sweat. These images have limitations, they can’t tell us about how Wade’s organs will function in the real world. But they can show us volume, shape, form. The past 15 weeks had been focused on giving Wade stability, maintaining that all-important fluid. One of our primary concerns had been lung development. We fear for his kidneys, we wonder about his bladder. But, as Phil said, all of this becomes irrelevant if we don’t have developed lungs.

Our pediatric specialist pulled up image after image. Wade’s eyeballs. His heart, stomach, extremities, brain, his bladder. And lungs. Our doctor turned to us and gave us numbers, volume, percentages. Phil said “So this is good?” He responded, “This is very good. And all thanks to that fluid.”

The rest of that Team Meeting was eyes smiling under masks and goggles, picking an induction date, learning more about the landscape of Wade’s potential outcomes. In truth, the outcomes we discussed and our understanding of Wade’s first years of life were no less intimidating. We’re stepping into a new phase of a really long road. But we know a few things now.

We won’t be alone for a single second.

We’ll be where we’re supposed to be, when we’re supposed to be there.

We can trust each other. We can trust our team.

Wade is a part of something really big. He’s at a hospital that is pushing and growing and expanding the world’s understanding of this diagnosis.

Wade’s going to know how connected he is to others. He’s going to know the outpouring of love we experienced. How so many people walked us across this “wild and perilous country.” He’s going to know how to be a helper, that we belong to each other.