If you’ve read ANRC for more than a few weeks, you’ve probably figured out that I have become very superstitious through this journey. So many times it felt like every time we started to get excited and started to feel hope, we’d be hit with another setback.
I’ll never forget driving home from the NICU with tears of joy streaming down my face. It was late August and the first time that the word “home” was mentioned. We knew he’d still need g-tube surgery, but Owen’s breathing was looking good, he was up to full feeds and it seemed things were finally turning around.
I was home less than an hour when the Resident called to tell me that Owen’s CMV count was elevated again and that there was evidence that it was in his kidney’s and causing his high blood pressure that we were struggling to get under control. The recommendation was to put Owen back on the Chemo-grade drug, Ganciclovir via an IV. There is an oral version of the medicine, but the IV version is more potent and because this is the virus that caused Owen’s intestines to perforate and kicked off the downward spiral in the first place, it was felt we should be aggressive. We knew he’d have to be on the drug for at least two weeks. He also would not be a g-tube surgery candidate while on it. The next morning Owen went to imaging for a PICC line placement (his veins were too small to place a line in the NICU). He fought really hard and came out white. He was inconsolable for the next several days. He stopped breathing two days in a row. Setback. Part of the work up from the breathing episodes resulted in chest and stomach x-rays. The radiologist noticed multiple fractures. Many ribs, both femurs, both humerus, both tibia and one fibula. Heart breaking setback. Just a few days before, we had set up a care conference to discuss the go-home plan. Instead the care conference became a meeting when the Neonatologist told us that things weren’t adding up with Owen and that they feared their may be a contributing genetic disorder. The type of genetic disorders that kids often don’t see early childhood. A slew of testing was kicked off. More Setbacks. The next week, Owen was done with his CMV treatment and his counts were looking great. I pushed for when he’d get his g-tube and the since decided Nissen. Surgery was brought in for consult and the surgeon didn’t want to operate on Owen. He felt his lungs were too sick to handle such a big operation. He wanted to wait at least another month. Another setback.
I was heartbroken. It felt like the word had spiraled out of control. Things had been looking so good. Only two weeks earlier we had talked about home and now they were telling us Owen may not be home until Christmas. When you’re expecting good and get bad…when you finally have found the courage to have hope… those are the worst kind of hurts. I’ve yet to find the words to describe the pain of those setbacks. We’ve all felt them, it’s exactly why the NICU is often described as a roller coaster. Setbacks are part of the preemie journey. A part of the journey for which there are no words.
Yesterday I received an email from Ian, from England, who wanted to introduce me to his amazing son, Hugh. Hugh was recently released from the hospital after a year, a week and a day. Ian made a beautiful video of Hugh’s journey. In the most simple way, and with very few words, Ian captured the essence of what it’s like to feel setback after setback. He also captured the tenacity of our babies. Hugh is a perfect example of finding our hope in the strength of our kids. Please take a few minutes to check out the video about Ian, Louise, Ted and Hugh and their one-of-a-kind micro preemie story.
Thank you to the Hunter family for sharing your amazing story. I wish you a many nights hospital free.© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster