On November 23, 2016, after five months in the NICU at Riley Hospital for Children, we brought our Theo home for the first time.
How appropriate that our one year anniversary of being home falls on Thanksgiving; this day of acknowledging and naming the countless, daily graces given to us as gifts.
I don’t think anything could have fully prepared us for those first weeks home with a baby who has a trach and g tube, along with extraordinary lung and heart conditions. We went from the NICU where Theo was monitored 24/7 by a team of medical personnel, to home – with Rick and I responsible for the entirety of his daily medical care. It would be a month before we got in-home nursing help, so we were really on our own. It felt a bit like an exhilarating, terrifying free fall.
That first night home was a mix of joy and anxiety, of fear and wonder. We had left the NICU much later in the day than we would have liked, so we didn’t get home until close to 8pm – and it had been dark and pouring rain during the three hour drive from Indianapolis. (Why not add a little drama to the whole situation?)
Our bedroom was quickly transformed into a hospital room as Rick setup Theo’s medical equipment, which included a trach humidifier, oxygen tank and compressor (the medical rep just dropped the equipment and ran, so Rick had to figure it all out himself. HERO dad!). This was in addition to the feeding pump, pulse oximeter, nebulizer, and suction machine that we had already been trained to use at the hospital.
I won’t ever forget the feeling of climbing into bed that night (actually it was that next early morning!) and having Theo just inches from me. It was euphoric, like a dream come true.
All those nights of kissing him goodnight at the hospital and leaving him in the care of a nurse had been excruciating for me, even though we had the most wonderful nurses a parent could hope for. What was especially hard for me was that Theo could make no verbal sounds because of his trach. I had constant nightmares about him crying and no one coming to comfort him because his cry was not audible.
I would call the hospital multiple times a night, every night, to talk to the nurse and make sure that Theo was okay. Even on the nights that I had stayed at the hospital and “slept” (I use that term loosely) in his room, it wasn’t enough, wasn’t close enough. I wanted to crawl right into his NICU bed and snuggle him close to my chest, our hearts beating together as they were intended.
Home began a new chapter for us, a very different chapter than our first one, and one that we had longed and hoped would come. And it had.
Our biggest concern was that something would happen to Theo at home. In the hospital we had seen him code several times, watched him get chest compressions and be “bagged” (being “bagged” is when he is given manual breaths with a hand held pump that looks a bit like a balloon). We had been trained to help him in most scenarios where something could go wrong, but we had endured so many terrifying moments during our time in the NICU and these memories were not far from our minds. We had also heard many stories of babies ending up back in the hospital, for a variety of reasons, sometimes within days of going home.
Those first weeks and months home, our bodies were on constant alert to every movement Theo made. I was up hourly, through the night, for months.
Thankfully, as the days turned into weeks Theo grew and flourished. He became more stable and we began to feel like we could take a deep breath.
One year later we have a beautiful, thriving seventeen month old who has not required any unplanned hospital admissions and has had no acute complications.
Throughout the scriptures and particularly in the Old Testament, God’s people are told to remember and mark the many ways God has been gracious and faithful. Sometimes this even meant erecting an altar, a pile of stones, as a physical marker, a tangible reminder of Gods faithfulness.
We mark days like today. Remembering where we have come from and celebrating the progress we’ve made. Friends, God has been gracious to us this past year!