There are some posts that I can’t start writing until Kyle goes to bed because I don’t want him to see me cry. It’s not that he hasn’t seen me cry, but sometimes crying is about healing and not about needing fixing and those types of cries, I like to do alone.
I’m not sure if the finished post will make readers cry, but it’s a topic that to me felt like the darkest, deepest depths of the bottom of this whole experience. I think about where we were a year ago and it still feels like I am getting punched in the gut. I won’t go into all the details in this post, but if you want to read about it in CaringBridge it’s the September 2nd post(you’ll need to scroll a little). I still can’t talk about those days without tears filling my eyes and I often get comments from others who seem haunted by that post.
For me, the hardest part was to watch Owen so clearly be uncomfortable. Inconsolable. Agitated. Always. He only slept in my arms. A few nights I stayed and I held him all night long in the recliner next to his bed. As I held him, he would splay out on my legs and I would bounce. My legs cramped or if I had to go to the bathroom; it didn’t matter. Except for during my lunch break, I bounced. While I bounced, I talked. Brainstorming with whoever would listen – what’s wrong, how can we help? Convinced it was reflux I hounded doctors, nurses, pharmacists, chaplains, social workers, whoever would listen to try him back on donor breast milk. I stayed later and later picking Kellen up from school at the last possible minute. I wanted to be nowhere but at the hospital. I hated leaving Owen and calling the night nurse to hear that he was agitated, restless and not sleeping…again. The Neonatolgist that knew Owen best told me at one point, “Tatum, I’ve had to tell you really difficult news before but for some reason, the hardest conversation I’ve had with you is about donor breast milk”. They could see the stress on my face and were starting to let me know they were worried about me.
Rightfully so, they worried – I was a wreck. I couldn’t articulate it at the time, but now I understand. When this same doctor had Owen on his sickest day, I was clearly upset and worried, but I was also very calm. I understood that what was going to happen was out of my hands – in that instance, there was nothing I could do to make Owen live. However, my son’s comfort and quality of life – managing his pain and fixing the causes – that felt like it should be controllable. I felt it was my job, as Owen’s mother, to make them fix it. I didn’t care how or whose idea, I just wanted it fixed. I knew I could keep him comfortable when he was in my arms and I knew there had to be something the doctors could do to make it more permanent. I was obsessed and relentless and exhausted.
In all fairness, the staff did their best to keep him comfortable and they all willingly participated in my brainstorms and were just as concerned about Owen as I was. At the end of the day, it was Owen who figured out a very dramatic way to communicate both root causes. He stopped breathing during feeds, two days in a row. The extent to which Owen wasn’t tolerating his feedings was very evident and the xrays to make sure it wasn’t more bowel issues happened to show some of the fractures.
For most people, the broken bones were the hardest part to learn and I agree – I had my first (and only) out-and-out meltdown at the NICU after learning about the bones. However, I believe it was just as much acid reflux as it was the fractures that was causing Owen discomfort. It wasn’t until after the Nissen surgery that we truly got our Owen back. After that surgery and its recovery, Owen finally slept again. We started to see his smile and his facial features returned to normal.
Look at Owen’s face in these three pictures. It was because of the significant facial changes that the doctors started suspecting horrific childhood genetic diseases. In the end, Owen’s been cleared of any of those diseases and no doctor feels he looks “syndromey” anymore. I’m not sure any doctor would go on record to agree it was pain that changed his face, but I find it very telling that we fixed the issues causing him discomfort and his facial features returned to the baby we knew.
To the people who met Owen more recently, it’s probably assumed that he’s always had his easy smile that warms the hearts of so many of us, but that’s not true. His smile is one that came hard-earned and I’m so glad that he uses it so willingly.
Ain't No Roller Coaster