The Pain of Setbacks

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

10 thoughts on “The Pain of Setbacks

  1. I have no words to describe the tears, both sad and joyful, from that video. Congrats on your family being together at home, Hunter family!! And for those setbacks for Owen and the Marinkovich family that I remember all too well.

  2. Brought me to tears…. For this story is far too familiar to mine. You are right, words will never describe the feelings you have when you experience setbacks. Alex was also trached and got her life back. She has been home for 5 months and is thriving!

  3. What a beautiful and unbelievably strong family. Thank you to you and them for sharing their story. Hugh and Owen are the epitome of a fighters.

    Lots of good thoughts that Hugh’s setbacks are behind him and that he continues to thrive at home. I have a feeling he is going to do big things…. as is Owen 😉

  4. I’m seriously bawling right now. What a captivating video of Hugh’s ups and downs. I wish Hugh and the Hunter family leaps and bounds of growth and development and hope that this next year involves very little time at the hospital. Thank you for sharing this story, Tatum. And to you – I hope Owen doesn’t have any setbacks this year either. Huge hugs to all of you.

  5. There is nothing that needs to be said after that video- it says it all! My tears and prayers go out to the Hunter family. Happy Birthday Hugh

  6. Oh my….I have a pile of wet tissues in my lap. What a way to start my morning. The Hunters are a beautiful and strong and incredible family. Just like my own. Takes me back to Owen’s first year and decorating his room in the PICU for his first birthday. Thank you for sharing their story, Tatum.

  7. what a beautiful boy. Thank you for sharing his story. I remember the first (and only) time I left Boo in the NICU. I cried all the way home and back again only to find out I would have to hold her while they strapped on the EEG torture device. I still blame that day on her hating to get her hair brushed 4 years later.

  8. Sometimes it amazes me how your posts are exactly what I need to read in a given day. This one really resonated – just a different context.

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