A Trip to Egleston

On Friday Bryan and I headed down to Egleston with 17 dozen cookies I baked, some yummy baked goods from a few friends (thanks Tracy, Kristen, and Melanie!), dozens of pretzel treats, and a few small gifts for some particular people who blessed us while we were at Egleston with Samuel. I was nervous about going -- about what being there would stir up -- but I knew I really wanted to say thank you to the people who made August a bearable and, in many ways, wonderful month.

On the drive there, I kept thinking about our final drive home from the hospital -- when Samuel had died a few hours before, and we knew we weren't ever going to bring him home. I remember getting to the car in the parking garage and popping the trunk to put our overnight bags in. When the trunk flew open, there sat the infant carseat, waiting to be installed in the backseat when Samuel would finally be cleared to come home. How pointless it seemed sitting in our trunk, and how cruel. And about 10 minutes into our drive I recall asking out loud, "What day is today?" I wondered what the date was of our son's death. I was surprised to learn it was August 31, and Samuel had only seen the month of August -- though every day of it.

Once we arrived at Egleston, Bryan and I loaded the cookies on a wagon and headed up to the CICU. Of every parent we passed I thought, "are you living the nightmare we endured?" Once out of the elevator and walking down the very familiar hallways, I heard a sound I hadn't anticipated. There were some sounds I was prepared to encounter -- like the beeping of the machines hooked up to every baby and child in the CICU -- but I had never considered the loud click and release of the automatic doors guarding the CICU and Step-Down Unit. We were still two turns away from Samuel's old quarters when I first heard it, but that sound stopped my heart for a few seconds. I got really shaky and felt my heart racing away after its pause. I looked at Bryan and said, "the doors. I never thought about the sound of the doors." I realized later that I associate the opening of the thick doors with the fear I felt every time we went back into the CICU -- the anticipation of something having changed for the worst since we'd left for lunch or to sleep at night or even just to go to the bathroom or pump breastmilk. We never knew what we were walking back into. Would a hoard of doctors be huddled around Samuel's bed in a crisis? Would his numbers be dropping into dangerous zones? Would he look more swollen than the last time I saw him? All these fears bombarded me every time I stepped foot into the unit. Even when I would go back inside just for a moment because I'd forgotten something or had to give the nurse breastmilk for the freezer, I would glance over my shoulder at Samuel's station to be sure there was no commotion around him. It was so terrifying to know something horrible could happen at any moment. And those doors opening with their clank brought it all flooding back.

When we got into the CICU on Friday, we saw Richard almost immediately. It was great to give him a hug. He rounded up a few people, and we spent 15-20 minutes talking in the entry way. Dr. Kim came out to see us, and so did Dr. Brown (who we call Jen), Sherese, Jennifer, and Lucrecia.

It was wonderful to be able to say thank you to people who served us in immeasurable ways. We felt blessed by the chance to talk to them, to hug them, to try to express what a role they've played in our story. I could see Samuel's dock, 2112, through the doorway into the actual unit. There was a baby boy there with his parents on either side of him, looking up to see who was causing a commotion in the entryway. I clearly remember being in their shoes, wondering if we'd ever come back to Egleston with smiles on our faces and wondering what the story was of those who returned. Their baby will now be on the list of heart childen I pray for every night. We walked out of the CICU teary and feeling so glad we'd come.

Then we went to visit Sarah Beth and her parents. She is doing really well after her second heart surgery, and it was kind of miraculous to see her in person, her beautiful face, her incision, her big blue eyes. We watched as Rachel and Don are still living the life we faced in August -- the hope, the fear, the concern at every cough or increase in heartrate. They are accustomed to this life and have found a way to live it in relative calm, but we remember the internal panic whenever Samuel's monitors suggested a potential problem. It's exhausting, and we felt both joy and heartbreak for them as they continue in this journey with their precious daughter.

As we walked the halls past the sleep pods where we slept the last 8 days of Samuel's life, past the garden we loved, and past the cafeteria where we ate I don't know how many meals, I felt surprised by how familiar it all was. I had expected the hallways to be filled with memories and for my stomach to be in knots, but I think because we were living in those halls so recently, it just felt normal to be walking them. I wonder if another year from now would be drastically different -- more emotional and memory-rich. This time those halls were just halls I had walked a hundred times over.

On the rainy, cold drive home, I told Bryan there was something good about being back, about being in the place where Samuel lived his days. There was something so good in being acknowledged as part of that place. Having walked away from Egleston hours after Samuel's death, it felt a little like we were moving out of the reality in which he lived and like we could never come back to that place and belong to it. I can't explain it really, but knowing that the people there -- Richard, Dr. Kim, and Jen -- acknowledge Samuel's part and place in the story of Egleston...it gives credence to his life. It gives weight to his 30 days. It gives truth to his existence. And it gives healing to my soul and heart. It makes me even more grateful for those people we love and who served us so wonderfully during Samuel's life. So, thank you all of you nurses, doctors, and RT's who cared for Samuel and for us in August. We are eternally grateful, truly.